Dr. Ciricillo explained to Jenn-Jen that Katelynn’s brain was still growing and he believed the channels he created endoscopically had essentially sealed themselves back up like the cave-in of a tunnel. Repeating the same procedure would probably have a fifty percent chance of success, so our doctor decided that it would be best to place a second ventriculoperitoneal (VP) shunt (http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm) to relieve the intracranial pressure from the enlarged ventricle. While there was no imminent threat that required immediate action, we were also advised not to wait. I had already been scheduled for an important business conference out in Florida during the week of October 18th, but it worked out well when the surgical coordinator informed us that we should realistically target October 25th for the surgery. After a couple of days, we received confirmation that Katelynn would have her operation at 7:30 AM on the 25th.

While Jenn-Jen and I are practically veterans when it comes to pediatric inpatient procedures, it is still so very emotionally taxing to bring our little angel of thirty-two months to this place that has given us some of the best and worst memories of our recent past. We kept consoling each other with reminders that, perhaps the timing of this unfortunate circumstance is actually a blessing in disguise, as Katelynn is so young that she has no idea where we were bringing her and what she was about to undergo. It is so difficult for us to imagine going through this a few years in the future when Katelynn is old enough to openly express her fear and anxiety, and worse yet, have the traumatic event carved into her long-term memory in full detail. As much as they say time smoothes out all things, I can still attest to clearly remembering events of my childhood that had matured into full-blown phobias. I just cannot fathom the thought of Katelynn one day being terrified of doctors and hospital visits, yet this may be the path we are ultimately heading down.

With a 7:30 AM operation, we needed to begin our day quite early and check into the Sutter Memorial promptly at 5:30. My business trip back east last week has actually prepared me to adjust to a shortened and uneven sleep schedule, but I was more impressed to find Katelynn to be so alert and in good spirits at such an early hour. We checked in at the hospital, almost the very same way we did back in June, and waited for a quick briefing with the anesthesiologist and Dr. Ciricillo before we would entrust Katelynn to the care of the medical staff. Considering all of the time needed for preparation, you would think we are getting ourselves ready for a day-long operation. The whole procedure was completed in no more than thirty minutes and Dr. Ciricillo came by surgical waiting area to explain how the operation went very smoothly. We would need to have Katelynn stay one night in the hospital for observation and a CAT scan the next morning.

As Katelynn came to from the general anesthesia, we moved her up to the sixth floor to Pediatrics and settled her into her room, which we were fortunate to have to our own. She was still a bit woozy from being under, but it brought us great joy to see our sweet daughter be so strong during the surgery. Unlike the operation back in June, the placement of this second VP shunt required the use of a more invasive procedure. We learned that the site on Katelynn’s skull and scalp where the shunt is placed would probably cause less pain than the incision on the left side of her abdomen. This incision is necessary to allow the thin flexible tubing connected to the shunt to be drawn down into Katelynn’s peritoneum for her excess CSF to drain. With Katelynn’s first shunt placement, she was only a couple of weeks old and in such a critical state that we were unable to see outward expressions of pain as we do now. To help alleviate the pain, the nurse has been slowly pushing a small dose of morphine into her IV stream every two hours for the past six. This is been very helpful in allowing Katelynn to rest more comfortably, which also gives us a greater peace of mind.

I am now sitting her in the sleeper chair nex to Katelynn’s crib, listening to the constant hum and buzz from the IV pump two feet away. The clock shows that is 11:00 PM and I am now feeling very worn from the long day that has passed. It looks like Katelynn is also stirring from her sleep and may be due for some more pain medication. Hopefully the rest of the night will be peaceful and we pray for good results from the CAT scan in the morning. As disappointing as it has been to find out the surgery from June was unsuccessful, I give my thanks to God that Katelynn came through today’s operation with flying colors and am very eager to bring her home where she belongs.

As much as I am hoping this will be Katelynn’s last neurosurgery for a very long time, there are still many unknowns that dot her course of treatment.  Dr. Ciricillo had explained that Friday’s fenestration procedure for her entrapped left lateral and fourth ventricles would, in all likelihood, be followed eventually by another operation further down the line.  In six months we will have Katelynn go through yet another MRI to see how much the two affected ventricles have receded.  The recent operation was intended to allow the entrapped ventricles to “communicate” with Katelynn’s right lateral ventricle, which has the functioning shunt system.  At some point, this system will malfunction, and that is when there will be another procedure performed.  I will have to confirm this with Dr. Ciricillo when we speak next, but I thought he had mentioned the endoscopic cerebral aqueductoplasty with a fourth ventricular approach as an option.  Over the phone last week, I believe he had also talked about a endoscopic ventriculostomy (http://www.hydroassoc.org/docs/FactSheet_Third_Ventricular_Endoscopy.pdf), or ETV, as the next step.  No matter which procedure, the next time Katelynn would require neurosurgery should be preceded by a shunt failure and the ensuing operation may actually make her shunt independent.  This would be an answered prayer, since Jenn-Jen and I never felt comfortable knowing that Katelynn’s shunt will malfunction sooner or later.

Until then, we are just excited to have Katelynn back home.  The timing of the discharge on Sunday worked out perfectly to allow Katelynn to take her afternoon nap, while I hit the shower and cleaned up with a nice shave.   After three days of doing neither, I felt amazingly clean after stepping out of my bathroom.  I suppose I did not really feel the full effect of the summer heat that has finally come to Sacramento, since I made the Pediatrics floor of Sutter Memorial Hospital my temporary home.   After the discharge, we have spent most of our days enjoying the air-conditioned comforts of home, but it is probably safe for me to speak for both Katelynn and myself to say that our beds have not felt this good in a very long time.

I am taking the rest of the week off from work to make sure all continues to go smoothly with Katelynn’s recovery.  Things have been slow and, truth be told, very normal since we have been back.  Jenn-Jen and I do take extra measures to keep Katelynn from bumping her head with Daria or anything else for that matter, but everything has turned out as well as it could.  It just feels rejuvenating to have my whole family safe at home together.  I could not ask for more.

 A couple hours later, the day shift nurse came by to tell us that we would be transported downstairs for the MRI.  Sometimes I wish I was not so familiar with this hospital, but having spent the better part of four months practically living out of this facility two years ago has allowed me to imbed most of the layout of the first and second floors into my long-term memory.  I probably could have brought Katelynn down myself, and if we do this enough, I may just consider moonlighting as an Imaging Technician.

 After a bit of a wait for the anesthesiologist to arrive, we were ready for the scan.  It was quite amusing to listen to the assisting nurse explain to me how he once had forgotten to remove his cell phone before entering the MRI room and ended up with all of his stored names and numbers erased by the tremendously powerful magnet.  It just would happen that I brought along my backpack, which contained my laptop, digital camera and digital video camera that conveniently stores recordings on a forty gigabyte hard drive.  Listening to the nurse’s story, I reached for my cell phone in the right pocket of my shorts and slowly began inching away from the caution sign hanging in the doorway that boldly proclaimed, “Warning – magnet is always on!” 

 The anesthesiologist came through the door roughly fifteen minutes later, with the aroma of a freshly toasted onion bagel attached either to his breath or scrubs.  He certainly must have tried to eat on the run between his last procedure and this one, but I was just glad to know the scan would be complete soon, meaning we would be able to move closer towards bringing Katelynn home.  I expressed some concerns regarding Katelynn’s seemingly long lasting post-surgical lethargy yeserday, but the nurse explained and the doctor affirmed that today’s use of the short-term sedative, Propofol (http://en.wikipedia.org/wiki/Propofol), would be metabolized by Katleynn within an hour or so after its administration.  Ironically, Propofol has gained notoriety as the drug implicated in the overdose death of Michael Jackson, which occurred exactly one year and a day ago.  Nonetheless, Katelynn’s past MRI scan a couple months ago involved the use of the same drug, so we knew what to expect.  It was not even ten seconds after the doctor depressed the syringe connected to Katelynn’s IV line before I felt her going limp in my arms with her eyes rolling backwards.  Thirty minutes and we would be done.

 Thankfully, my parents and one of my sisters have been instrumental in keeping Adam and Daria busy during the course of the past two days.  This allowed Jenn-Jen to join me at the hospital as the MRI concluded right on time.  We followed the anesthesiologist and assisting nurse as they wheeled Katelynn in her hospital-grade crib towards the same recovery room we sat In yesterday after the surgery.  An hour later, our daughter regained consciousness and we were brought back up to her room on the sixth floor.

The rest of the day seemed very promising, especially because we noticed Katelynn was showing more alertness and an improved appetite.  My sister came by the hospital around noon with Adam to pay a quick visit to Katelynn and drop off a thoughtful care package.  Katelynn was still looking a bit tired, but it was very reassuring to see her interactions with everyone today.  Eventually, we were even able to have her removed from the IV fluids that have been connected since her surgery, and this allowed us to comfortably bring her to the pediatric play room a few doors down.  After lunch, Jenn-Jen and I spent some precious moments with Katelynn, coloring with markers and encouraging her to pretend to feed us play food.  On today’s menu was a sausage, jalapeno and what appears to be a Serrano chile, but it was probably the best play food I have enjoyed in a very long time.  During the course of our play time, our daughter would periodically lift up her left hand, which had her IV line and fingers taped onto an arm board, and try to use it to no avail.  Instead of getting frustrated, Katelynn’s good-natured personality shown through and she used the dangling IV connector to tap on the table just for the fun of it.

 Later in the afternoon, we learned that Dr. Ciricillo’s colleague, Dr. Zusman, would come by during her rounds to assess Katelynn’s MRI results and provide a timeline of when we would expect discharge.  She recommended we stay one more night if we felt that Katelynn was not showing signs that she was back to her “normal” self.  Jenn-Jen and I conferred and agreed that Katelynn was certainly looking and acting much better than yesterday, but her need for several naps during the day made us lean towards the side of caution.  We decided it would be best to stay put and avoid any unnecessary returns to the hospital.

 Dr. Zusman did come by a couple hours later after consulting with Radiology over Katelynn’s scans.  She said that the left lateral ventricle does look a little smaller and there was not much change in the size of the fourth.  This news was a little disappointing, as both Jenn-Jen and I had expected more immediate results.  Perhaps we were a over-ambitious, because Dr. Zusman explained the actual change may be a more gradual process.  Of course, we already knew that Katelynn would require another MRI in half a year to determine the effects of yesterday’s surgery.

 My parents came by in the evening with dinner and our spunky little Daria in tow.  I really think the twins missed each other and it warmed our hearts to hear Katelynn say “hi” to her sister.  Daria had spent a very busy day with my parents, and the plan was for Jenn-Jen to bring her home for the night.  One cause of potential concern actually arose while I was outside the hospital, reattaching Daria’s car seat to our vehicle.  Jenn-Jen noticed during the interaction between our girls, Daria had made Katelynn laugh, but there seemed to be some paralysis on the right side of Katelynn’s face.  Neither of us noticed this earlier and the rest of Katelynn’s extremities on her right side did not seem to be affected either.  I brought up the issue to the night nurse and will have to follow up with Dr. Zusman upon her return tomorrow morning to get her opinion.

 As the night is now wrapping up for Katelynn and me, I am hopeful for a quiet, uneventful night.  Katelynn’s nasal passages seemed a bit congested earlier today and has not improved much tonight.  I hope this does not affect her sleep, but since I put her down in her crib an hour and twenty minutes ago at 9:00 PM, she has stirred several times and almost sounds as if she has a cold.  At least she is not connected to the IV pump and there is no need for antibiotics tonight.

Apparently, the existing shunt in Katelynn’s right lateral ventricle had become somewhat occluded and was not functioning as well as it could have.  With some manipulation from the instrument on the endoscope, Dr. Ciricillo was able to remove the coagulant that was affecting the shunt.  Additionally, we learned Katelynn’s choroid plexus (http://en.wikipedia.org/wiki/Choroid_plexus), which is essentially the cerebrospinal fluid (CSF) factory in our bodies, was actually not filling her fourth ventricle because a web-like layer of membranes had virtually trapped the flow into the space.  Had the CSF been entering the ventricle properly, we would have seen a severe dilation in the matter of a day or two.  This would have led to a much more alarming situation, which thankfully, we were able to avoid.  While the operation was a huge success, there will inevitably be another sometime down the road to help ensure the outbound flow of CSF at the base of Katleynn’s fourth ventricle is functioning properly.  We are scheduled for a MRI tomorrow morning to see the immediate effects of today’s surgery and will have a follow-up scan six months out to see the longer-term results. 

Katelynn did extremely well with her surgery, but has been very sluggish since she came out of recovery.  She also received the relaxant Versed (http://en.wikipedia.org/wiki/Midazolam), also known as Midazolam, before going to the operating room.  This pre-sedation medication was given to help Katelynn not feel anxious while she was separated from Jenn-Jen and me before she was put under anesthesia.  We haven’t been able to get her to eat much since surgery, but that may be due to some soreness in her throat from being intubated during surgery, or perhaps this is a slow recovery out of anesthesia.  Hopefully, Katelynn will bounce back to her normal self tomorrow after her MRI scan.  At this point, we may be able to take her home in the afternoon, but I am not completely sure. 

Tonight will be a little bit of a long night, punctuated by periodic visits by our nurse for vital signs and another dose of antibiotics that will come due at 2:00 AM.  The good news is that Pediatrics is unusually quiet with very few patients on the floor and we are fortunate to have a room to ourselves.  The sleeper chair that adorns the room is an old friend of mine I have not visited for over two years, but we will be reacquainted very soon.  I joke now, but only because things could not have turned out better today.  I would gladly spend many more nights in this sleeper chair knowing that my daughter is given every chance to reach her full potential.  Katelynn is quietly sleeping in the crib only a few feet away and I wholeheartedly thank God that I am blessed to be her father.

I will spend the night here at Sutter Memorial Hospital with Katleynn up on the pediatric floor.  Hopefully we will be able to bring her home tomorrow or Sunday at the latest.  Thank you all for your prayers and I’ll provide another update this evening.

Jenn-Jen and I are now anxiously waiting to hear back directly from the doctor, as I have specific questions relating to the operation he is seeking to perform.  I know that he wishes to proceed with the less-invasive endoscopic procedure, which will equate to a shorter recovery time in the hospital for Katelynn.  If all goes well, we anticipate being able to bring home my daughter within two to three days.  In my personal research, I was able to locate an abstract from the Journal of Neurosurgery (http://thejns.org/doi/abs/10.3171/ped.2005.103.5.0388) for a surgical treatment called an “endoscopic cerebral aqueductoplasty” with a fourth ventricular approach.  When I do receive the return call from Dr. Ciricillo, I would like to find out his thoughts on this research and see if this is the surgery Katelynn will undergo.

Sitting here in my home office, I find myself battling the old and familiar demons of fear and doubt that have not stepped through my doors the past two years.  Deep inside I knew that Katelynn’s shunt revision in June of 2008 would not be the last time she would require the services of a neurosurgeon, but it still leaves me very unsettled that this is happening again so soon.  I know that it is through times such as these that I am to lean on my faith in God, in which He calls me to trust and follow daily.  Yet I have to admit that it is so difficult to fully let go and believe that all will be well.  What is to come in less than three days honestly scares me, but I also know it must be done.

As for the three operations, we first talked about placing another ventricular shunt and connecting the tubing in a “Y” arrangement with the existing shunt system in her right lateral ventricle.  This option did not settle well with me from the start, since Katelynn had already experienced the need for a shunt revision when the catheter in her ventricle leading up to the shunt became blocked with a blood clot roughly two years ago.  The idea of a shunt malfunction is terrible in itself, but adding another shunt would only increase the chances of something going wrong sooner than later.  Additionally, connecting the two systems would only complicate troubleshooting, since it would not be an easy task to locate blockage.

Option number two was an endoscopic procedure which would essentially create an artificial channel between Katelynn’s swollen fourth ventricle and her shunted right lateral ventricle.  By creating this pathway, the increased CSF would ideally flow toward the existing shunt and empty out as it has faithfully been since Katelynn’s revision surgery.  The procedure would involve the use of an endoscope, a medical instrument consisting of a very thin, flexible tube with a light and camera system at the tip.  There would also be attachments to allow Dr. Ciricillo to make the necessary manipulations to create this channel or perforation to relieve the CSF pressure.  The endoscope would be inserted via a small incision and the whole operation would be completed in thirty minutes or less, which means this option is the least invasive of the bunch.  I am not certain and will need to check with the doctor, but we may be looking at an Endoscopic Third Ventriculostomy (http://www.hydroassoc.org/docs/FactSheet_Third_Ventricular_Endoscopy.pdf) operation.

The last choice would be a fourth ventricle cyst fenestration, which is essentially the creation of an artificial opening to simulate the normal CSF draining pattern Katelynn would have experienced had her intraventricular hemorrhage not blocked the natural “drains” with scar tissue.  My initial reaction to this procedure was positive, as it sure seemed like it would be the most effective solution to remove the “plug” that is causing Katelynn’s fourth ventricle to inflate like a balloon.  However, Dr. Ciricillo informed me that this procedure would actually be the most invasive, as it would require drilling near the hindbrain, and we should expect a two-week recovery period.  Needless to say, my optimism faltered heavily and door number two began to look much more promising.  I was not able to locate any free information on this procedure, but a study done in 1998 by the Pediatric Neurosurgery Service at Duke University (http://content.karger.com/ProdukteDB/produkte.asp?Doi=28745) seems to have found the fenestration to be successful in treating five out of six pediatric patients.  Of these six, four had experienced “five or more failed shunt procedures.”  After reading this abstract, my doubts swung the other way, because I would not wish to put my poor Katelynn through any additional neurosurgical procedures.

Katelynn and I left Dr. Circillo’s office to report the news back home to Jenn-Jen and Adam.  The doctor informed me that he wanted to review the CT and MRI scans and make a recommendation within the next week.  In the meantime, we were instructed to help Katelynn recover from a lingering cold she had been battling for a couple of weeks and stay healthy.  Apparently, even a mild respiratory issue such as a common cold puts unwanted risk in a surgical operation.  This basically meant that we should avoid crowded places and stock up on hand sanitizing gels and wipes.

Dr. Ciricillo’s office did finally call back after we followed-up twice, anxious to know which procedure Katelynn would be undergoing, as well as when the operation will take place.  We learned that the endoscopic procedure is the route the doctor wishes to take, but will need to wait until Monday to get a surgery date.  A large part of me is breathing a sigh of relief, since endoscopy’s diminished invasiveness is welcome anytime.  Yet, there is still that lingering thought that makes me wonder what if this is not successful in stopping the swelling.  I am trying so hard not to be anxious and am working on giving this to the Lord, but it gnaws at me throughout the day.  Please continue to keep us all in your prayers and, hopefully, I will have even more to share on Monday.

Today’s post will focus on my beautiful Katelynn, who continues to amaze us with how much she has developed.  Jenn-Jen and I do not have a week that goes by without one or both of us expressing how thankful we are that Katelynn has thrived despite the grim prognosis that clouded her birth.  We have spent most of the past two years and four months wondering about the severity and potential impact of Katelynn’s developmental challenges, praying that God would continue to bless us with more miracles, and preparing ourselves to be able to handle any situation that may come our way.  Dear friends and family, there is much in the way of good news to share, yet there is still much more in which we ask for your commitment in prayer.  Let me begin with the positive.

Both Katelynn and Daria have been in a long-term struggle with acid reflux that has been mostly remedied with the use of Prevacid.  Without this medication, I honestly do not know how we would have made it this far.  Katelynn still seems to have a chronic problem with a build-up of phlegm that causes her to vomit just about every day, but through the suggestions of the Dietician at our Pediatric Gastroenterologist’s office, we have been successful in boosting enough calories in Katelynn’s diet over the past few months to finally have her show up on the growth chart for weight.  Of course, we are looking at roughly the seventh percentile for her age, which seems quite pathetic in itself.  Nonetheless, just seeing that mark on any percentile curve was an accomplishment Jenn-Jen and I have yearned to see for well over two years.  Katelynn is weighing in at a relatively hefty twenty four and a half pounds, and we feel encouraged to keep working on this upward trend.

As for Katelynn’s motor skills, the battalion of therapists working with our daughter on a weekly basis has made a very significant impact in reversing the debilitating effects of cerebral palsy.  Of particular note is Katelynn’s participation in a treadmill study offered by the Physical Therapy Department at the University of the Pacific.  Over the course of six weeks in April and May of this year, we had the blessing and use of a toddler-sized treadmill, as well as the oversight and coaching of a very compassionate Professor, researcher and physical therapist.  We watched and recorded Katelynn’s progress from spending ten minutes a day at 0.05 meters per second at the beginning of the study to an impressive minimum of forty minutes daily at 2.50 meters per second at the conclusion.  We were also allowed to borrow a small walker which we continue to use in helping Katelynn reach the goal of walking independently one day.  I simply cannot express the true joy in my heart through the words expressed here whenever I reflect on how much Katelynn has changed from the frail infant, literally fitting into my palm, to my determined little girl with the most precious and victorious smile on her face as she grasps her walker, traveling from one end of our local Target store to the other.

Katelynn has also been surprising Jenn-Jen and me with her ever-increasing use of language.  While we have our doubts as to how much of it is meaningful conversation versus simple mimicry, I can tell you that Katelynn is saying things like “Mmm… that’s so good,” and “Wow!  Cool!”  That second phrase must have come from Adam, or Katelynn is really growing up way too fast.  Now I just need to see if I can record these on video, in addition to her giggling like Elmo from Sesame Street and calling a banana an “apple.”

As much as I wish I only had positive news to share, new developments are underway, and they concern us heavily.  At the end of April, Katelynn underwent a Magnetic Resonance Imaging (MRI) scan of her brain at the request of Dr Ciricillo, her Pediatric Neurosurgeon.  Two weeks ago, I brought Katelynn in to have the scan reviewed in what I would have expected to be a routine follow-up visit.  As the doctor brought up the images of past Computerized Axial Tomography (CT) scans, he studied them with a calm focus and compared them to the more detailed image from the MRI.  The silence did not sit well with me, and the matter only worsened when he informed me that Katelynn would need to go through another operation on her brain.  In my mind, it was practically a foregone conclusion that all of Katelynn’s major surgeries were a thing of the past.  At most, I feared that there may be another revision or her ventriculoperitoneal (VP) shunt (http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm) many years down the line, but this was much too soon to hear of such unwanted news.

As Dr. Ciricillo placed the MRI and CT images of Katelynn’s brain on the LCD screen, he showed me where the Grade IV intra-ventricular hemorrhage (IVH) had created scar tissue that caused one of Katelynn’s lateral brain ventricles to swell with cerebrospinal fluid (CSF).  The ensuing hydrocephalus was remedied by the VP shunt that was put in place shortly after birth and all had been fine, so we thought.  Apparently, over the course of the last two years, CSF had been building up and not properly draining in Katelynn’s fourth ventricle (see the red zone highlighted in the picture below).  The MRI provided such a highly detailed image that was not fully captured by the previous CT scans, so this very unfortunate development came as a surprise to us all.

Fourth ventricle - highlighted in red

As I sat there, quite stunned by what I was seeing, Dr. Ciricillo went onto explain how the fourth ventricle has expanded significantly and is, and will continue, to put pressure on Katelynn’s brain stem and cerebellum.  The brain stem includes vital areas that play a significant role in basic functions such as sleep/arousal, movement, attention, breathing and other vital reflexes.  The cerebellum is another extremely important part of the brain that controls and coordinates muscle movements.  Holding my increasingly-fidgety Katelynn, I still could not fully absorb the fact that we would need to subject my young daughter to another surgical operation.  This just cannot be happening.

There is actually much more I could write on this, but I would like to continue on tomorrow with more details, including Dr. Circillo’s recommendation as to how we should proceed.  Right now, Jenn-Jen and I would appreciate all of your prayers for Katelynn and our family, as we prepare for the inevitable operation.

It almost does not seem possible you are both two years old today!  Not only have you beaten the odds, since you hovered dangerously near the limit of viability (http://en.wikipedia.org/wiki/Viability_(fetal)) when you were born, but you have both blossomed into my vibrant and beautiful girls.  Many people have been touched by the story of your lives and, to this day, the prayers for you to thrive and grow continue to pour in.  There is not one day that passes that I do not take a moment to tell God how thankful I am to have you in my life. 

Katelynn, your Mommy and I worry quite a bit about you.  You have this amazing ability to melt the hearts of everyone you meet with your sweet and loving personality, and we have seen you skillfully use this to your advantage.  Still, I know my Katelynn and that stubborn fighting spirit that brought you where you are today.  Just ask Mommy how many times you have thrown a left cross to effectively transfer your food from the spoon in my hand to my perfectly clean shirt.  It really seems you are getting stronger each day and we are thrilled to see you pulling yourself up to your feet.  We do know that the road to reaching the full potential of your mobility will be long and tough, as you are affected with excessive pronation (http://www.thestretchinghandbook.com/archives/pronation-supination.php) of your feet.  As I took you in to see the Certified Orthotist today to be fitted for DAFO 4 braces, I was grateful to hear that your pronation was not terribly severe.  The brace, which is also known as a supramalleolar orthotic, is a custom fitted support device that will help you strengthen your muscles as you learn to stand with proper alignment in your ankles and feet.  Our prayers have also been answered, as insurance has agreed to cover the full cost of the braces.  So in roughly two weeks when the DAFO 4 is ready, we will begin working on getting you up on your feet.

As much as we want to get you up and walking, you are perfectly content as you immerse yourself in a pile of books.  Lately, you have also been very vocal in your speech and your repertoire seems to have expanded significantly to include words like bush, gosh, much, batch and bench.  Now if we can only get you past the challenges you have chewing and swallowing food, we would be ecstatic.  There have been some definite improvements in your gag reflex, but I think Mommy and I are just worried that pushing you too hard with tougher textures will only cause you to throw up all the calories we work so hard to get into your system.

Daria, your Mommy and I worry about you even more so than your sister.  The only fear you seem to have is when a stranger picks you up, which, in reality, is a fantastic safety mechanism.  Even when we found you up on the second floor the other day when we had accidentally left the gate on the stairs unlatched, you seemed a little more comfortable that you probably should have been.  Your fun and bubbly nature perfectly compliment the adorable way you say “hi” to anyone that walks through the door.  I will need to make sure to have the video camera standing by more often so we do not miss these fleeting moments that may never come back the same way again.  We also noticed recently that you have been standing in the cutest posture, with both of your hands behind your back, when you are trying to make an observation or peer into a sack of groceries.  I just do not know how I can grab my camera quick enough to capture this, as you are literally up and running in a flash.

Like your sister, you also have not been shy in communicating.  What Katelynn has in terms of the breadth of her vocalizations, you seem to make up in volume and inflection.  Your favorite phrase is “Here you go,” which either means you want to share an item in your hand or you want someone else to share an item with you.  Of course, you also happen to do combination phrases such as “Here you go,” immediately followed by “Uh oh,” when you decide to take the newly acquired item and purposely drop it to the ground.  This is only funny and cute until it happens while you have a face of food while you are seated in your high chair during a meal.  We still fight with a resistant bout of indigestion that is causing you pain, especially during your afternoon nap.  With the feeding clinic coming up in the not so distant future, hopefully we will figure out what needs to be done to make things more comfortable.

There is still so much more to talk about when it comes to the two of you, but I wanted to let you know that we actually celebrated your birthday a little early this year on Saturday, January 23. Your Auntie Christina was able to come back from the Bay Area with your soon-to-be-Uncle Ryan to celebrate your birthday at a family dinner we planned.  Unlike last year, we wanted to keep it small and decided to throw it at the newest California Pizza Kitchen downtown.  The funny thing is that the location was actually a last minute decision because your Mommy and I went there the night before for a date and enjoyed it so much that we thought it would be great for a celebration.  The highlight of the evening was when the waiter came over to refill water glasses.  Grandpa Owyang decided to reach over for Grandma’s glass, and somehow she thought he was going to drink out of it.  Normally this is fine, but Grandma had a cold, so she nearly tackled Grandpa to keep him from catching her illness.  The waiter jumped aside and Grandpa only scared the poor guy by explaining that Grandma had the flu.  Of course, he said this as the waiter already had her glass in his hand.  You should have seen how quickly Grandma moved that night and also the expression on the waiter’s face.  I ended up trying to reassure the waiter that Grandma might only have a cold, so I think we can safely return there without much embarrassment.

Well, my sweet daughters, you are now officially two years old.  You have come such a long way from your long and intense stay in the hospital for the first three and a half months after your births.  The past year has been full of answered prayers and accomplishments, and there is so much to remind me to take a moment to just quiet my heart and be thankful.  I look forward so much to the day when I can sit each of you on my lap and tell you the stories of your precious lives.  Happy Birthday to my sweet angels, Katelynn and Daria.

On Saturday, January 9th, we were excited to part of the long-awaited grand opening of the $17.3 million North Natomas Library.  Of particular note was the special privilege and honor Adam enjoyed as his Cub Scout pack was invited to perform the flag ceremony to mark the momentous occasion.  After a number of speeches from several esteemed state and local government dignitaries, the Scouts were invited back out at the ribbon-cutting to officially open up the library to the public.  This invitation put Adam and me in a very favorable position to literally be the second and third patrons to enter the library.  The most hilarious part was when Jenn-Jen logged onto the library’s website later that day to find me in a photo, strategically placed in the background between Congresswoman Doris Matsui and City Council Member Ray Tretheway, apparently posing as either a lost tourist or a Secret Service agent (see for yourself and play “Where’s Gordon” at http://www.saclibrary.org/?pageId=607). 

As fun as it was to partake in welcoming our new library, the following week was marked with adjustments and appointments.  Adam returned to school on the 11th, after enjoying a long three-week winter break.  A day later on the 12th, Jenn-Jen brought Daria in to see her Pediatriac Gastroenterologist to assess her seemingly stubborn bout with acid reflux.  The doctor raised some concerns, as reflux is usually outgrown by age two, and wanted to see if we could eventually wean Daria off Prevacid, the acid blocking medication.  Apparently, the ideal course of action will be to transition Daria over to Zantac, which blocks a smaller percentage of acid.  Another issue came to light as we learned that Daria weighed in only a hair over twenty pounds, which means she is significantly underweight, even for her adjusted age.  The doctor asked for us to bring Daria back in about six weeks and brought in the staff Dietician for consultation regarding our daughter’s weight.  To my surprise, Jenn-Jen came back home with a whole new game plan.

Probably the most surprising part of the visit was when we learned that the Enfamil Enfacare formula we had been giving Katelynn and Daria is not providing a sufficient amount of calories to help with weight gain. Enfacare is a higher calorie formula designed for premature and underweight babies (22 calories per liquid ounce), and we add extra calories by mixing in whole grain cereal (60 calories per quarter cup), this is still not enough.  So as of the 12th, we have officially taken the girls off formula.  In its place, we are now combining the cereal with the nutrition drink, PediaSure (which is 30 calories per liquid ounce), twice a day.  We are also replacing the third formula/cereal feeding with a mixture of whole milk and cereal.  The two snack feedings in the late morning and afternoon have also received a boost, as we are aiming to incorporate higher calorie foods such as sweet potatoes, corn, certain fruits and yogurt into the girls’ diets.  The Dietician is encouraging us to aim for the goal of getting one thousand calories into each of the girls each day.  It still astonishes me to hear that figure, as my family physician had asked me to try to reduce my intake to sixteen hundred calories a day back when I was pushing myself to reduce my cholesterol and blood sugar levels.  Back then, I weighed more than nine times where Daria is today!

On the very next day, Daria went in for an early appointment to conduct a Magnetic Resonance Imaging (http://www.webmd.com/a-to-z-guides/magnetic-resonance-imaging-mri) , or MRI, scan of her brain.  Our pediatric neurologist had seen earlier head ultrasound images of Daria shortly after she was born, but wanted a more thorough image provided by the MRI to make sure all is well from a structural perspective.  While the procedure is routine and not usual, anesthesia had to be given to Daria to keep her motionless as the images were being taken.  Unfortunately, anytime Jenn-Jen and I think about Daria going under, we are immediately brought back to the horrifying experience back on March 30th when our daughter had to undergo laser eye surgery for her retinopathy of prematurity (http://owyang.wordpress.com/2008/03/30/march-30-2008-a-surprising-reaction/).  During that unforgettable and wrenching experience, Daria had an adverse reaction to the sedative, Fentanyl, slowing her vital signs down to a very dangerous level.  The medical team had to quickly reverse the sedation with Narcan, which is typically given to patients that are experiencing an overdose of heroin.  Daria’s reaction to the Narcan was as alarming as her experience with Fentanyl, so Jenn-Jen and I still experience quite a bit of anxiety whenever we know that our sweet girl is going to have to be put under.

Fortunately, both the administration of the anesthesia and the MRI itself went smoothly without a hitch.  Jenn-Jen informed me Daria came to almost in a drunken-like state, fumbling and flailing around while yelling out gibberish.  I could not help but chuckle to myself and wished I could have been there with my video camera to capture the moment, not just for the comedic value, but in celebration that the days of life-threatening complications and issues are well behind us.  Thank God for answering our prayers.

So now we wait to see the girls’ neurologist to go over the results of Daria’s MRI, as well as the electro encephalograms (EEG) both girls experienced a while back.  In the meantime, we are working to get both Katelynn and Daria adjusted to this increase in calories.  With their sensitive stomachs, it has been a bit of a challenge, but we certainly have been through much worse.

Look where we are now.  Adam is bright and gifted seven year old big brother to two very special twin sisters.  It was almost as if he knew that he had some catching up to do when he was a baby and he set a goal to make sure he would not be left behind.  As Jenn-Jen and I watched him grow, not just physically, to keep pace with his peers, we also found ourselves amused at how much Adam seemed to enjoy learning.  We still fondly recall and reminisce on how I so foolishly allowed myself to be sucked into one of those book-a-month clubs that sent a small selection of overpriced children’s board book like clockwork every thirty days.  With all of the things keeping us busy, cancelling the subscription seemed to always be the last thing I would be able to get to each day.  So after several months, I finally wrote to the club with my final payment and discontinued the shipments.  The books sat there for months and I vowed not to ever let this happen again.  Then out of the blue, we caught our young son, who was probably not much older than a year, mosey himself over to the stack of books and sit there thumbing through each one with full concentration and enthusiasm.  Adam would be surrounded by no less than half a dozen of these books and literally keep himself immersed for fifteen minutes or more.  We began to wonder about him when he repeated this behavior again and again.

The love of learning for Adam did not burn itself out over time.  After he entered preschool and kindergarten, we noticed how he seemed to absorb every aspect of school.  It really was not until the beginning of the first grade last fall when it dawned upon us that Adam just may not be in the right environment.  When we asked his teacher how she felt he was doing, she expressed concerns that he may be better off if he were promoted to the second grade.  Jenn-Jen and I never doubted Adam’s intellectual capability to tackle the academic requirements, but were so very hesitant if our son would be ready from a social perspective.  We were, and still are, so thankful that the school administration decided to put together a “study team” to essentially shadow and evaluate Adam’s readiness for promotion.  After the analysis was complete, we met up with the team, which included Adam’s teacher, Principal and Vice Principal.  In a meeting that felt more like a group job interview, we talked about what our son’s home environment is like, as well as any concerns we had.  It felt like a breath of fresh air to hear the Principal tell us that he fully believed that if Adam were not moved up, he would probably begin to lower his standards just to fit in with his peers.  At the same time, it alarmed us to hear that this behavior was already observed by the Vice Principal and Adam’s teacher, who reported that Adam would not raise his hand to answer questions to avoid building the reputation as a know-it-all.  So, it only took a few seconds of thought before Jenn-Jen and I agreed to let Adam transition to the next grade.  The part that still brings a smile to our faces is when we broke the news to Adam after our meeting that, after a month in the first grade, it was time for him to move on up.  As we were walking out to our car, our son turned to us and said and said to us quite seriously “I didn’t know that first grade would be that short.”

Adam’s promotion actually caused some confusion in other areas that were unexpected.  Last fall, we thought we would give Adam the opportunity to try Cub Scouts (http://scouting.org/scoutsource/CubScouts.aspx), since he was at the requisite age of six.  What became unclear was which pack he would be placed in, since they use a boy’s grade to determine where he belongs.  We were right in the middle of the study team’s evaluation when the first “roundup” or kickoff for the year began.  Once the results came in, it was decided that Adam would be in the Wolf pack, which is for boys that are eight or in the second grade.  Since he joined, he has really enjoyed the opportunity to earn achievement awards, or belt loops, to mark his progress in scouting.  He was quite proud to show off his coin collection and, with my assistance, eagerly built a simple weather station consisting of a homemade barometer and rain gauge.  Over Christmas break, we have also been out to the tennis courts twice so he can earn his belt loop for that sport.  Scouting has been great for Adam’s goal-oriented nature, and it is a commitment of time and energy that Jenn-Jen and I fully support.

Speaking of commitments, Adam has also taken up martial arts training in Tae Kwon Do.  He has been going to class twice a week and is hoping to be ready to test for his progression from white to yellow belt in a month or so.  It is no surprise that Adam has the academic portion of the promotion requirements down solid, as he can count from one to ten in Korean.  Of course, it helps that Jenn-Jen has been able to help Adam with his pronunciation.  I personally find it funny when Adam tries to argue that his master says Korean numbers a certain way that does not sound the same as how mom (who happened to have emigrated from South Korea) says it.  As for the form, or poomsae, which Adam will be tested, we are still working hard at getting the transition between steps smoother so he will pass.  Making time for practice has truthfully been more challenging than expected, but I am hoping Adam will be committed to doing his best.

Outside of school, scouting and Tae Kwon Do, Adam is completely addicted to Lego Star Wars.  I am both grateful and worried, as members of my extended family have come to our door like drug suppliers, often bearing new sets for him to build.  This time of year is when the flash flood of gifts come bearing down upon us like a torrential downpour.  With Christmas and Adam’s birthday separated by less than two weeks, it seems like anything that meets the simultaneous qualification of being Lego and Star Wars will brighten my son’s eyes like nothing else.  Admittedly, I enjoy watching Adam beam with excitement as his collection grows, but I also look for opportunities to teach him to be thankful and not take these relatively expensive gifts for granted.  With a young seven year old, sometimes I feel that the lesson does not stick as much as it should.  My goal is to use each of our father-son building times not only to bond, but to see if we can agree on a way to give back.  Like many of our Lego projects, it is definitely a work in progress.

So, as I celebrate seven years with my son, I pray that God will give me and Jenn-Jen the wisdom to be the best parents we can be.  It really feels as if the years have come upon us quickly and I hope we have made a positive impact that will help him grow up to be a confident, compassionate and successful young man.  There is truly nothing more challenging and rewarding than being parents.  Please enjoy these pictures of me with my newborn son and where is today.

It was no more than ten minutes into the trip, as we passed downtown Sacramento on the freeway, when the personalities of our girls began to show themselves.  Katelynn was quietly cooing her famous “ooooh-ooh” of joy and excitement from her car seat in the middle row of our Honda Odyssey, while Daria, not four feet away in her own seat, began to wriggle and whine as if to inform me that we should have arrived to our destination seven minutes ago.  Jenn-Jen and I had known from previous trips to my sister’s home on the other side of town that Daria was not one to enjoy the confines of a five point harness, no matter how fun and exciting the end point of the journey may be.  Still, we had seen some signs that Daria was beginning to realize the delayed gratification can outweigh the mild irritation of being semi-restrained for a relatively short duration.  Apparently, there would be less cooperation and more complaints today.  My wife immediately implemented what I will call “Operation Calm Down” and began singing to provide a distraction, and a fine one at that. 

Well, after many songs and Jenn-Jen’s contingency plan of handing Multigrain Cheerios one by one back to Daria, we arrived at the snow park at Yuba Gap (http://www.parks.ca.gov/?page_id=23052).  Katelynn was still in great spirits and Adam, in the back row, informed us of how excited he was to see the snow blanketing the ground.  After paying five dollars for the day-use permit, which I find to be an outstanding value, we found a nice parking spot and bundled up everyone so the fun would begin.  Murphy’s Law made its unwelcome presence known as I was unable to locate Adam’s coat, which was in all likelihood, still hanging in the coat closet back home.  To make matters worse, the two plastic clips designed to secure Adam’s snow bib’s shoulder straps also decided to break off.  Jenn-Jen promptly came to the rescue and did some handy knot work to secure the straps, and thankfully the temperature was not too cold.  Adam would make due with a hooded sweatshirt as I grabbed our sled and we made our way to the hillside to join the others already engaged in the frosty fun.

It did not take long for us to learn that Katelynn is not quite comfortable sitting or crawling in the semi-packed snow.  We spent part of the morning carrying her around and the other part trying to convince her that snow is actually her friend.  Daria, on the other hand, will probably be competing in multiple events in the 2026 Winter Olympics.  Jenn-Jen and I were astonished at the sight of our rambunctious twenty-three month old daughter walking on the uneven snowy ground, shouting out in glee.  Even when she eventually tripped, she either came back upright or decided she would make her way about in 4×4 style.  Daria’s excitement and love of the snow definitely made the trip worth the time and effort involved.  I may not be as so bold to attempt another day at snow play without recruiting other able-bodied support, but I am glad to have returned back to Sacramento knowing Adam and Daria had a blast, and Katelynn really loves a good car ride.

As I spent some time yesterday briefly updating Katelynn’s developmental progress, today I wanted to focus on Daria.  She is in so many ways the exact opposite of her sister, and I thank the Lord each day for giving me two daughters that are so different in their personalities.  Daria is really a bubbly bundle of energy and a constant source of laughter in our home.  Usually you can find her running, sometimes uncontrollably, through the house in search of her next adventure.  Whether it is chasing down our elderly cat, Phoebe, or checking to see if she can share in another family member’s snack, Daria rarely stays still for more than a few seconds at any given time.  One of her favorite activities is to bring me my slippers whenever she learns they are not being filled by my feet.  She will literally hunt me down, with one or both slippers in hand, insist in her sweet voice “here you go,” and not leave until I have them on.  My heart just may break when the weather changes and my feet no longer need warming up.

In terms of Daria’s motor skills, she continues to work on catching up to her chronological age of twenty three months.  Daria still sees her physical therapist once a week to work on strengthening, since she walks around with her hands up in a guarded stance, which is atypical for a child her age.  Other than that, I would say that Daria is more physically active than practically anyone else in the house.  She has grown to be quite the climber and Jenn-Jen even found her on top of our dishwasher door, which was briefly left open after the clean dishes were being put away. 

Daria also continues to work with our wonderful speech and feeding specialist weekly.  A year ago, both of our girls had been struggling so much with the insidious acid reflux that made feedings so painful for the girls and us as the parents.  Today, the story is quite different, as our therapist is moving on to help Daria with her speech development.  In fact, Daria loves food so much that we feel that we need to limit her consumption so her digestive system can handle the volume and variety she almost seemingly inhales when given the chance.  Since I have caught a few recurring instances where she wakes up crying from her sleep only to eventually vomit, we have been wondering if she is just not quite ready to eat some of the foods we prepare for our meals.  We should know more once we have our appointment with the girls’ pediatric gastroenterologist in a couple of weeks.

Communicating with Daria has also been a huge source of joy and laughter around the Owyang home.  It was a number of months ago when we successfully taught both Daria and Katelynn sign language to ask for “more.”  Coupling that breakthrough with Daria’s steadily increasing appetite offered a deep sense of satisfaction, as we felt were able to meet her needs before any frustration set in.  Since then, Daria has also learned to say “here you go” (see the story about my slippers above) whenever she wanted to share an item with someone else.  We were beginning to get a “thank you” out of our daughter whenever we offered her something, but that phrase is not sticking quite yet.  Daria, however, does use “here you go” when she would like you to share whatever is in your hands with her, so sometimes it can get a little confusing.  I probably hear her saying “here you go” over a hundred times a day, and honestly, I find it adorable each time, even if she wants me to hand over the remote control to the television.

The following photo is a perfect representation of Daria’s personality and is one of my favorites.  It is good to note that there was no prompting whatsoever involved, as the moment was captured by our friend and photographer, Joelle.  Daria was just extremely curious about this strange black object that was standing in the way of a good game of peek-a-boo with the nice lady that came over to play.

"What are you doing?"

I can only begin by proclaiming that God has truly been good and faithful.  Despite my extended absence in providing an update as to the happenings and whereabouts of my family, I admit there has been a deep longing in my heart to share all that taken place in 2009.  As we begin another year, I look over my shoulder only to be amazed at the abundant blessings filling my life with peace and joy.

The Owyang family has experienced much change during the past year, and along with this change comes the inevitable challenge of adaptation.  Undoubtedly, this has kept me stretched with the hope that my time management and multi-tasking skills have been sharpened with repeated use.  I had been praying for life to shift gears back to what I would call “normal,” and have come to the conclusion that my definition and expectation of “normal” has forever been altered since the Lord brought us Katelynn and Daria.  Nonetheless, all is well indeed and I shall resume my posts with an update on Katelynn.

Katelynn has certainly blossomed into a sweet twenty-three month toddler that melts many hearts with her never-ending supply of hugs and kisses.  While she is definitely our cuddly daughter, I still see the strong fighting spirit in her that I saw almost two years ago when she was struggling in Sutter Memorial Hospital’s NICU to survive.  Just ask her sister when there is a toy in contention and you will see Katelynn’s strong will and iron grasp emerge. 

It is also this determination that helps spur Katelynn on as she works to pass her developmental milestones.  The severe brain injury she suffered through her Grade IV intra-ventricular hemorrhage shortly after birth has, unfortunately, manifested itself in weakness in her mobility.  Our pediatric neurologist has officially diagnosed Katelynn with cerebral palsy (http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm), but we are still uncertain as to the extent of the limitations she will face.  In the past year we have witnessed Katelynn slowly improve her movements, and now I am so thankful to see her gradually transition from a belly or army crawl to a full, regular crawl on her hands and knees.  She is also working very hard to get up on two feet and has recently been successful in pulling herself up, usually by using me or another family member for support.  I fully believe this progress has been accelerated because of a combination of the amazing work of Katelynn’s physical therapist and the will to be able to do everything Daria does.

Katelynn has greatly improved, but still struggles with a persistent gag reflex that prevents her from taking most solid foods that are not smooth or pureed.  We have been working with her speech and feeding specialist to break through this and I believe we will overcome this mountain slowly but surely.  She is able to take little snack puffs that melt in her mouth without too much trouble, but anything that requires more chewing almost certainly causes Katelynn to vomit.  Believe it or not, even throwing up does not deter our strong-willed Katelynn from immediately reaching for the next puff.  This will be a point of discussion with our pediatric gastroenterologist at our next appointment in a few weeks, along with the question if we still need to continue the use of Prevacid to combat the acid reflux that has been a persistent problem for both of my girls for well over a year now.

Despite the medical challenges Katelynn continues to face, I can truly say that she has made a remarkable journey from her early days.  Just reading through some of my entries shortly after the girls’ births, I find it amazing to revisit and recollect my mindset back then and see where my sweet, dear Katelynn is today.  I had been desperately praying to God to prepare me to be strong enough to weather any disability, no matter how severe, Katelynn would face and He has heard my cry.  As I mentioned, there is still much uncertainty ahead, but the Lord has given me hope and strength.  The following Psalm holds a special place in my heart as a reminder of how God has blessed me and my family with His goodness, love and faithfulness.

Shout for joy to the Lord, all the earth.
Worship the Lord with gladness;
come before him with joyful songs.
Know that the Lord is God.
It is he who made us, and we are his
We are his people, the sheep of his pasture.
Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
For the Lord is good and his love endures forever;
his faithfulness continues through all generations

Psalm 100 (New International Version)

In closing, I would like to share one of my favorite pictures of Katelynn, taken a few months ago by our friend and gifted photographer, Joelle.  My next post will be an update on Daria and her recent adventures.

Katelynn at the Park 09.25.09

The two of you have now been with us for a year, and what an amazing journey it has been.  A year ago to this day, you decided to make your grand entrance into the world fifteen weeks ahead of schedule.  While both of you have officially turned one, you are still playing catch up with your development tracking at roughly 8.75 months adjusted age.  It is truly a miracle to look back at how small the two of you were at birth.  Katelynn, it seemed as though you barely registered on the scale at 1 pound 8 ounces at birth, but look how far you have come to be a full 16 pounds 5 ounces at your weigh-in yesterday.  Likewise, Daria, your tiny 1 pound 9 ounce birth weight has climbed up to 15 pounds 7 ounces.  As great as this is, both of you girls still need to gain more weight to help with your physical and mental development.  If you could only see how much effort your mother and I have put in during the time you came home to help you grow.

Somehow, there is still a relentless force driven by your extreme prematurity that is working hard against us in keeping both of you properly nourished.  We have brought you to see your pediatrician, a dietician, and three speech pathologists/feeding therapists to do whatever we can to make sure you thrive.  Just yesterday, we spoke with your dietician and agreed that it is now time to have a pediatric gastroenterologist examine both of you to see what can be done with the persistent acid reflux that seems to adapt itself, first to Zantac, then next to the Prevacid medications that have become a part of your daily lives.  As much as your mother and I fear the thought of having a gastric feeding tube, or G-tube, placed in one or both of you to make sure you are nourished, we are working hard to prepare ourselves to accept this as a possibility.  I just wish you both could reassure us that we haven’t failed you as your parents.  It just breaks our hearts to think that we have tried all we can and it may still come down to the fact that we were not able to feed you as normal parents should.  Then again, there is nothing about this past year that has been even close to being “normal.”  We are now waiting to get the appointment with the GI doctor set so we can find out what our options are.  The dietician tells us that she has worked with kids for over twenty years and has seen how much relief a G-tube has provided to patients, but what is more important to your mother and me is knowing that we are doing what is best for the two of you in the long-term.  As it was explained to us, the goal is the make sure the two of you take in enough nourishment in your early development, since it will have a great impact on attributes such as intelligence.  I promise you that your mother and I will do whatever we can to help both of you be the best you can be.

As gloomy as everything may seem, Katelynn and Daria, please know that since December 9^th of last year, many special things have happened.  We had the opportunity to celebrate Christmas together as a family of five.  Mommy even put up the two special ornaments I bought for you from Disney World when I had to be away on business last October.  I can’t wait until you’re old enough to understand their significance.  After putting the year behind us, you also had the chance to wish your big brother Adam a very happy sixth birthday at his party.  While you were too young to join Adam and his friends to watch Bolt in 3-D at the theater, you sure did get a lot of attention at Steve’s Pizza.  January is full of other birthdays too, as we took Grandpa Owyang out to lunch for his birthday.

Four days ago, on the 24^th, we had a very special birthday party for the two of you at Grandpa’s restaurant, Fortune House.  We invited family and special friends that played a special role in taking care of our family while the two of you were in the hospital for the first three and a half months of your lives, and even after you came home last May.  About forty people came to your party and we could have invited even more people, but we wanted to keep it smaller so Mommy and I could whisk you away quickly for your afternoon feeding and nap.  The two of you were so adorable in your pink and gray dresses, and I think Mommy did a fantastic job in making a laminated, magnet-backed photo of the two of you as a party favor. 

We also celebrated Chinese New Year on the 26^th, and it happens to be the year of the Ox.  That’s Daddy’s Chinese zodiac animal, so it means I’m turning thirty-six this year.  Can you believe it?  What’s even more amazing is how the two of you and your big brother did not fall into the zodiac animal designations  you were supposed to be because the of the Chinese lunar calendar.  If the two of you were born in May around your due dates, or even if you weren’t so early, you would have been born in the year of the Rat, Mommy’s zodiac animal.  Instead, you came so prematurely, you were born at the end of the year of the Boar.  Adam did the same thing and was born in the year of the Horse instead of the Ram.  We’ll just keep confusing our non-Chinese friends with this bit of family trivia for the rest of our lives.

So what else has happened in the past two months?  Well, President Obama was sworn in last week and this is significant because he’s the first African-American president in the history of our nation.  We pray that he’ll do all he promises to do to help our country get back on its feet, especially with how bad our economy has been.  Daddy still counts his blessings every day that he not only employed, but given the awesome privilege of working from home.  We don’t know how we would do it if I was away from you during this time.  More importantly, Daddy thanks God that his medical benefits have helped cover the costs we have incurred with your births.  Would you believe that the bills have hit just about $2 million for the two of you?  You are both miracle babies and are priceless in every sense!

Katelynn and Daria, as long, difficult and scary as it has been for us this past year, you two have been an inspiration not only to me, but so many others.  Katelynn, you have shown me just how strong you are by defying the odds after experiencing a grade IV intra-ventricular hemorrhage, the worst possible classification.  You battled through a couple of life-threatening bacterial infections, the potential loss of your vision, a frightening bout of infection-induced seizures, and multiple surgeries.  Still, you smile at me and Mommy everyday with the love and trust that we will do our best to take care of you.  Daria, while you did not experience quite as many medical complications as your sister, you still have shown us how much of a fighter you are.  I still remember how difficult it was to escort you to the John Muir Medical Center in Walnut creek last spring when we learned that your retinopathy of prematurity (ROP) wasn’t getting better after your first round of laser eye surgery.  Those ten days we spent together separated from Mommy, Katelynn and Adam were tough, but seem like nothing compared to the scare we got when they used too much anesthesia on you during the first operation.  When they had to give you Narcan, it was horrifying to see how it made your heart rate and pulse skyrocket so quickly.  Now I look at your bright and cheery eyes everyday and thank the Lord that you have your sight.  Not only that, my heart almost flutters when I witness you using your eyes to enjoy the pleasures of life, like you do when you laugh at your brother dancing around to amuse you. 

Girls, I know it has been really hard to keep a consistent journal of everything that is happening around you on a day to day basis.  Between work, your feedings, spending quality time with you and the rest of the family, and keeping the house in a functional state, I can’t seem to squeeze out a minute without sacrificing time for something else.  I hope that you can keep me accountable and remind me that one day you are going to read this letter as well as the other pages of journaling I have done in our family blog.  I look forward to that time when we can share this as well as the pictures and videos documenting your amazing story.  As Mommy put in your party favors, miracles sometimes come in pairs.  Happy birthday to you both, Katelynn and Daria.  You are and always will be Daddy’s sweethearts.

Romans 5:1-5 New International Version

It has been well over a month since I have posted a blog entry, and while there is much to share, I honestly feel overwhelmed by a mix of frustration, lethargy and shame.  Through a quiet moment of prayer tonight, I felt compelled to gather my fleeting thoughts and focus my energy on transforming the negativity into a productive time of writing.  The Lord prompted me to the fifth chapter of the apostle Paul’s letter to the Romans, and in the quiet calm of the evening, He reminded me I need to cease in my futile attempts to solve all my problems alone.  To properly set the stage and provide context as to while I have been silent for so long, please bear with me as I take you along the past month and share where I believe I have failed.

Since the end of October, life as it stands in my home has been very difficult.  Actually, “very difficult” may be more of an understatement… downright frustrating might be an accurate assessment.  In my last post I had explained how Jenn-Jen and I have been focusing our energy in maintaining Katelynn and Daria’s nutrition, and in many ways, it has been an ongoing battle.  Now that nearly a month and a half has passed, I stand here weary and regret to report that the frustration of failure is, unfortunately, outweighing the joy of success.  It is simply beginning to feel as if we are losing the war against Daria’s aversion to feeding.  All of our concentrated effort to ensure our girls are receiving enough calories has resulted in a spike in our stress levels, a drastic reduction in patience and what I believe is De Quervain’s Tenosynovitis (http://www.medicinenet.com/de_quervains_tenosynovitis/article.htm).  The later is a form of tendon inflammation often resulting from repetitive stress on the wrist, and unfortunately, is a price Jenn-Jen and I both have paid in our attempts to boost our twins’ nutritional intake by carrying them during feeding times.  I am going to contact my physician to see what options are best to help us both remedy the pain that has been with us for over a month now.

On a positive note, with the help of our feeding therapist, we have made strides in breaking through Katelynn’s feeding aversion.  I am very happy to report that Katelynn is now quite an easy feeder, even more so than a month or two ago.  Most of our feeding sessions take place in her bouncer seat, which is, thankfully, stress-free on our wrists.  Katelynn still requires us to hold her (and not be seated) to feed when she is tired, but this is truly a small price to pay when we see the fruits of our labor through the end result of the empty bottle.  If Daria could only emulate her sister, we would honestly have nothing to complain about.

My friends and family, in writing this post, I hesitate to share about our feeding struggles, as I really feel as if I am some sort of automated message on an endless loop.  Feedings have been our bane ever since the little light in Katelynn and Daria’s developing brains switched on and informed them that their drinking and sucking is no longer a reflex, but a voluntary behavior.  Coupling this with their acid reflux makes for an extremely unpleasant experience, no matter the fact that we are combating that negativity with daily medication, continuous positive reinforcement and somewhat increasingly unsuccessful attempts to maximize calories in smaller volumes of formula and soft foods such as rice or oatmeal cereal.  I think what is most challenging for me is to explain our troubles to others that are under the assumption that babies just drink from the breast or bottle effortlessly and peacefully like angels.  Adam had never given Jenn-Jen this level of challenge while he was nursing, so we keep trying to tell ourselves that we are really not creating our own troubles out of the stress we feel.  Sometimes I just wish others could spend a day in our shoes just to understand how unbelievably hard it is to just make it to the peace of the nighttime. 

Despite all of this often unbearable stress that has become nothing short of an unwelcomed housemate to us, I am desperately trying to remind myself that God brought these two miracles into our lives nearly ten months ago for a reason.  He has given them to the stewardship and parenthood of Jenn-Jen and me this far, and it is undoubtedly His hand that has granted them the gift of life from the doorsteps of death.  I began this evening feeling frustrated that Daria does not want to feed, lethargic from the battering we have come to expect every three hours during the girls’ waking hours, and completely ashamed that I have failed as a parent.  God has intervened and spoke the two words of “perseverance” and “hope” to provide me with His peace and sanctuary that has seemingly been absent for weeks now.  The road has not been easy, and the mere thought that suffering can lead to hope escapes my simple logic.  Nonetheless, I look at Katelynn and Daria sleeping in their cribs tonight and tell myself how blessed I am to have them both here.

There will be more to come tomorrow.  For now, rest beckons.

As many of you already know, Katelynn’s grade IV intraventricular hemorrhage and ensuing hydrocephalus has been, and continues to be, a source of significant concern for us.  There are still many unknowns as it relates to her long term prognosis with issues related to physical and/or learning disabilities, but one development that has become evident is Katelynn’s diagnosis of plagiocephaly (http://www.plagiocephaly.info/faqs/what_is_plagiocephaly.htm), or the flattening of one side of her skull.  During Katelynn’s previous visit to her neurologist, we were encouraged to hear that she is showing fantastic developmental progress despite the dire circumstances surrounding her first few weeks of life, but we were also advised to take measures to help ensure proper growth of her head.  The main concern here is to do all we can to allow Katelynn’s skull to form correctly so that there will not be any undue pressure on her delicate brain as she continues to develop.  Through the neurologist’s recommendation, we will have Katelynn fitted for a Hanger Cranial Band (http://www.hanger.com/ThePatientExperience/Pediatrics/Pages/Plagiocephaly.aspx), which is a FDA approved orthotic device essentially functioning as a custom-fitted helmet that applies constant, but painless, pressure to help the skull develop correctly.  Katelynn will need to wear her cranial band twenty three hours a day for a period of six to twelve weeks.  Jenn-Jen and I are dreading the initial discomfort our daughter will need to endure, but right now, Katelynn’s skull is still very malleable and we completely understand and agree with the need to use the band. 

One initial piece of discouraging news from this was that my health insurance conveniently denied coverage for the cranial band.  For one reason or another, this was not disclosed to us until we had packed up the girls and drove out to Hanger’s office for the initial laser-scan fitting.  It really was not a pleasant experience to be told that the cost for the device, fittings and follow-up appointments would set us back twenty-five hundred dollars.  Thankfully, we were able to work out coverage through our program at the Alta California Regional Center.  Jenn-Jen and I thank God everyday for granting us resources such as this to help ease the financial burdens that often seem unending.  As the purchase has been approved, we are now waiting for Hanger to call us to reschedule the scan so they can move forward with fabricating the cranial band for Katelynn.

Last Tuesday, October 21^st, Jenn-Jen and I experienced probably had one of our worst days in many months.  Having come back from a five-day business trip to Orlando the previous Wednesday night, I was eager to provide relief for Jenn-Jen through her excruciatingly difficult time holding down the fort back home.  Unfortunately, the six days leading up to last Tuesday were extremely stress-filled, as both of our twins had become increasingly combative during their feedings.  Jenn-Jen and I were literally at our wits’ end trying to figure out why Katelynn and Daria were so resistant, and we felt an urgency to see our pediatrician for advice.  On the 21^st, we brought the girls in and were in shock when we placed them on the doctor’s scale.  Daria was showing up as 9 pounds 10 ounces, and Katelynn came in at 10 pounds 7.5 ounces!  This was a huge drop of approximately twenty five percent of each of the girls’ weights since we had them weighed a month ago.  Immediately, Jenn-Jen and I questioned the accuracy of the scale, but the nurse assured us the weights were correct.  We waited in the examination room, mostly in silence and painful discouragement, for what seemed like an eternity before the pediatrician came in.

Unfortunately, we did not find much satisfaction after speaking with the doctor.  Essentially, we were going to be referred to a nutritionist for a consultation to see what can be done to reverse this unhealthy weight loss.  What was most frustrating for Jenn-Jen and me was that there was no doubt on the pediatrician’s part on the validity of the weights, nor was there a single question posed about any changes to the feeding patterns associated with Katelynn and Daria.  As much as we value our pediatrician, who has been Adam’s doctor since his birth, we spent the afternoon wondering if we might need to find another physician for the girls that may have significantly more experience with extremely premature babies.  We certainly do not want to be doubtful or ungrateful, but in many ways, we went home feeling no reassurance that this impending crisis would ever be resolved.

The next twenty four hours were nothing short of a concentrated campaign to force-feed as many calories as we could get into our girls.  Jenn-Jen and I were feeding Katelynn and Daria during their waking hours constantly and it saddened us to see how we were tiring them out and making the experience more adverse than it already has been as of late.  It just so happened that we had a home visit scheduled on Wednesday afternoon with our public health nurse from Sacramento County and our service coordinator from the Alta California Regional Center.  The timing of the appointment would have only been perfect had it been a day earlier.

As it is the routine during each of the visits by our public health nurse, she brings her own calibrated scale to weigh the twins.  Jenn-Jen and I eagerly anticipated the results as Daria was gently placed for measurement, and to our utter astonishment, we almost keeled over to see the electronic display read 12 pounds 13.5 ounces.  As color was returning to our faces, the overbearing burden lifted off our chests, and our scowls transformed into grins, we had Katelynn weighed and the scale reported back the results as 14 pounds 2.5 ounces.  The variance of three to three and a half pounds with the pediatrician’s scale was incredible.  My feelings of celebratory joy began to fade into the slow burn of anger and I called up the doctor’s office to inform them that there was a serious problem that needs to be resolved.  We agreed to bring the girls in as soon as possible in the afternoon to determine if there was indeed a malfunction with the scale, but the strenuous feeding schedule we previously put Katelynn and Daria on left them both wiped out and desperately in need of rest.  Jenn-Jen and I decided it could wait until tomorrow for us to confirm the weights.  We let the girls take a nice long nap and spent the rest of the day re-teaching ourselves to inhale and exhale fully and slowly.

The next day, Thursday, October 23^rd, we did bring Katelynn and Daria back into their doctor’s office to check their weights.  Lo and behold, their “calibrated” scale now showed Daria at 13 pounds 4 ounces and Katelynn at 14 pounds 0.5 ounces.  We raised nothing short of a quiet, but polite, ruckus with the physician’s assistant and asked the doctor to call us when he has an opening between appointments.  We heard back minutes after leaving the medical office and agreed that we would still bring the twins in to see a nutritionist to determine if there is a way to increase their caloric intake, since we truly still need them to catch up on their weights.

Our overwhelming challenges with Katelynn and Daria’s feedings still continue, but through our own hypotheses and the testing of our theories, we have determined that they may have a dislike for the taste of breast milk mixed with formula.  Jenn-Jen is in the process of weaning herself off the extremely cumbersome and time-consuming pumping process, so we have been increasing the formula to breast milk ratio to prepare the girls for the transition.  Jenn-Jen had read that sometimes frozen breast milk can have a sour taste when thawed, but remains perfectly fine for babies to consume.  To test this out, we gave the girls bottles with formula only and saw a very significant drop in resistance!  It has been less than a week since we made the switch and the good news is that our supply of frozen breast milk had already been near full depletion.  The girls still fight on occasion, but they are definitely taking more in their feeds than before.  Praise God!

We have an appointment with a nutritionist next Monday, and I have already blocked off my day to be there for the two-hour consultation.  Additionally, we had a speech pathologist/feeding specialist drop by unexpectedly today for an excellent session as she observed Katelynn feeding.  Our goal is to work with our new resources to help “retrain” Katelynn and Daria to not associate feedings with negative feelings, correct and implement proper oral motor skills to help them be more efficient in drinking from a bottle, and see if there is a way to maximize the calories the girls are taking in during each feeding session. 

Jenn-Jen and I talk a lot about how Katelynn and Daria are such easy babies to take care of when they are not feeding.  We look forward so much to the day when we overcome this seemingly insurmountable obstacle that seems to break our spirits every two to three hours each day.  Deep inside, we both know the challenges will pass, but we are not exaggerating when we tell you how exhausted we are.  I have written about how raising extremely premature twins is like running a marathon, and it certainly has felt like we have been running nonstop since we brought the girls into this world.  Please do continue to keep us in your prayers as we work towards the goal of enjoying our roles as parents to its fullest.  Thank you all for your support and please watch for some updated pictures in the next day or two as I try to get a bit more organized.

This battered financial path of recent weeks is, unfortunately, not so different than our family situation here at home.  In my last post, I shared some of the positive developments that have strengthened our spirits as of late.  Today, I must bring everything back into perspective and show the proverbial half-empty glass.  Jenn-Jen and I are sick, tired and quite nervous of what is to come.  Nonetheless, for those of you that know me well enough, I remain a tempered optimist and it is always through the challenges that I turn to my faith for renewal and guidance.  With all that has happened, I can certainly use a heaping serving of each.  Let me begin with the macro, encompassing issues that are affecting our family, namely the challenges of illness and an eminent cross-country business trip.

A couple of weeks ago, Jenn-Jen spoke the ominous words that we hoped so much not to hear: “I think I may be getting sick.”  Despite the immediate deployment of our countermeasure of choice, Zicam, my wife began showing cold symptoms within the next forty eight hours.  As much as we would have wanted to quarantine Jenn-Jen to keep the remainder of our family healthy, it simply was not an option, given the responsibilities and demands that come with the badge of being a mother of multiples.  It did not take long before the virus spread, first to Katelynn and then to me.  Today, we suspect Daria is afflicted as well, and Adam is coughing suspiciously every so often.  The constant hand washing and other infection prevention protocols simply were not enough to prevent an outbreak.

In simple terms, this cold bug has made life around the house very challenging.  The most difficult part is watching Katelynn fight the nasal congestion that has been causing her to struggle through her feedings.  Infants instinctively breathe through their noses, so the mucus buildup creates an enormous amount of respiratory difficulty for our poor baby.  I imagine what she is going through is similar to trying to drink a cup of water while holding your nose.  While Jenn-Jen and I are taking decongestants, expectorants and analgesics to diminish the irritating symptoms, Katelynn’s age precludes her from using any of the medications we almost take for granted.  Instead, we try to keep her unplugged by using a bulb syringe to suction out her nasal passages and use our Vick’s humidifier in the nursery when the girls are sleeping.  Through nothing short of a miracle from God, both Katelynn and Daria are still able to sleep relatively sound and peaceful throughout the night.  As a precaution, I continue to spend my sleeping hours in the guest room next to the baby monitor.  I am just thankful that I am able to fall asleep quickly, even after interruption.

Probably the second greatest challenge in dealing with this first cold for the girls is keeping quiet and calm during the five feeds Katelynn and Daria each take during the day.  When I speak of quiet and calm, I am actually referring to the need for Jenn-Jen and me to try to suppress our cold symptoms while we are cradling one of twins during a feeding.  The mere act of letting out a sneeze or chest cough can immediately kill the momentum of a good feed, and nowadays, that momentum is treasured dearly.  As much as we want to relieve that pressure and urge, which actually only helps migrate the virus to the rest of our surroundings, Jenn-Jen and I find often find ourselves painfully holding everything in.  I truly hope this ends soon.

On top of our family’s seasonal health issues, we are struggling with an inevitable business trip that is looming around the corner.  In a few days, I will need to pack my bags for a five-day trip to Orlando to attend my company’s flagship Symposium event.  A few months ago when I agreed to attend, my mindset was hopeful that Katelynn and Daria would be thriving and feeding well by the time this trip became imminent.  While the girls are thriving in many ways, it is no surprise that their feedings remain as our most difficult challenge surrounding our day-to-day life at home.  We are doing all we can to concentrate the scheduling of our key respite workers and my sisters to help while I am across the country, but somehow it still does not feel like it will be enough to keep Jenn-Jen afloat until my return.  With my parents away in China until the end of the month, I am grateful to have any help that is offered.  My hope is that the girls’ feedings will improve to the point where someone other than Jenn-Jen is able to give them their bottle in a reasonable amount of time.

Where I can use the most prayer surrounding my upcoming trip is that I will not be worried and distracted.  During this business trip, which I have taken each year for the past six, the itinerary will keep me busy throughout the day and evenings.  It is actually quite a mental and physical drain to balance the daily agenda activities along with the responsibilities of my workload provided by my non-attending clientele.  Just the thought that Jenn-Jen is back at home struggling to make sure all of the children are doing well is quite daunting.  To outsiders it may not seem like much to fuss about, but we strive so much to do all we can to ensure that Katelynn and Daria are given everything possible to help them develop normally.  We place a large amount of importance in the nourishment of the twins, as their weight gain is, in many respects, the most tangible barometer to measure if they are thriving.  Given all of the feeding challenges that have worn us out, my absence puts a very large wrench in the routine and system that we have put together over the months.  My mindset is that I must travel to Florida, do the best I can for my company and return as quickly as I possibly can to offer reinforcement back home.  At least I had the prudence to schedule a couple of days off work after I come back to devote my complete attention to my family.

Besides the annoying cold bug and my upcoming trip, we are fighting other battles that seem to take up much more time and energy than I would prefer.  One of the most offending nuisances is the marked increase of pigeons that have taken up residence on our rooftop.  The number of birds this year has grown to such a level that they are creating a visible mess of droppings and feathers around the front of our house.  I already asked our pest control company for advice, but they are holding off work on two story structures as they hammer out issues regarding liability and insurance.  A neighbor of mine recommended a local chimney service to help set up spikes and metal mesh screens to make our roof less attractive, but I simply have not had an opportunity to schedule a consultation.  Friends jokingly recommend that I purchase a high-power BB gun and declare open season on the offending creatures.  I would be lying if I told the thought does not cross my mind every day, especially when I see the droppings accumulating on my driveway and on a window sill near my front door.  I honestly do not think I have ever hated pigeons more in my life as I do now.  Unfortunately, this may need to wait until late next week at the soonest before I can devote the time to take back my rooftop.  In case you are wondering, the only thing I have fired at the birds is water through the “Power Wash” setting on my hose nozzle.  Obviously, that did help improve the situation, and only showed me how large of a flock I am going to need to control.  My pest control technician did tell me that we should start seeing a decrease in the number of birds as the weather cools.  Right now we are in the low eighties for our high temperatures during the day, so that decrease seems like it may be quite far on the horizon.

Additionally, I am stunned at the amount of work it takes for me to straighten out problems on insurance claims that have been miscoded or mishandled in one form or another.  With the large number of medical professionals that have seen Katelynn and Daria since their birth, I know the laws of probability are not in our favor that we would be able to emerge from this unscathed and error-free.  Each time I look at one of the evidence of insurance statements that seem to come almost every other day in the mail, I am floored that each of my girls have amassed over one million dollars of medical bills during the course of their hospital stays.  Sometimes I feel as if I am an accountant when I look through the filed claims, the amounts that are covered by insurance, and the portion that we are responsible for as copayments.  I really do not have the luxury of pouring over the inordinate amount of paperwork that documents all of the twins’ treatments, and every once in a while an overdue payment letter catches my attention.  I have been on the phone several times with several organizations to straighten out other people’s errors, and this just seems to be unending.

There are many more grievances and challenges that deplete our diminishing reserves of energy and patience, but we are still trying our best to stay hopeful.  Despite my groaning and complaints, I am eager to get through this cold, come back from my business trip, take care of those dastardly pigeons and make sure we are not getting any more incorrect medical bills.  When I step back and look at the bigger picture, I do count my blessings when I see how far we have come as a family.  As impatient as I may become during the trials and tribulations that daily life can bring, I try to imagine that uncomfortable grinding feeling I am experiencing at the moment is simply the hand of God working to sharpen and prepare me for tomorrow.

So, despite going through this sinking feeling that seems to mimic the stock market, I try to tell myself that we should be near the bottom soon.  I am just trying to be patient for the rebound.  My dear friends and family please do keep us in your prayers, especially after my departure on Saturday.

As I think about the violent gyrations on Wall Street, I look back to the past two weeks here in the Owyang home and feel quite motion-sick from our own roller coaster ride.  Despite the wild swings in our lives, mood and overall outlook, I am at peace tonight in my home office and, even more so, am thankful for the opportunity to be able to gather my recent memories and place them into this web journal that I seem to set on the back burner so often these days.  I will begin with the good news and areas where we give our thanks to God for his provision, and perhaps will continue tomorrow with a posting on where we are struggling.

After Jenn-Jen’s trip with Daria to the Easter Seals feeding clinic session, we came back with a diagnosis that gastroesophageal reflux disease, or GERD (http://www.medicinenet.com/gerd_in_infants_and_children/article.htm) is the responsible party to all of our woes surrounding Daria’s difficulty in feeding.  GERD has been a problem with Daria since we brought her home, and to combat this, we had been providing her with twice-daily doses of Zantac (Ranitidine) to help suppress her stomach acid.  Just as we were about to give up and pray that Daria outgrows her reflux soon, we went to the Sutter Memorial Hospital Special Care Nursery Reunion (more later) on September 20th and happened to meet up with the parents of twins who had been in the hospital when our girls were there.  We shared stories about the challenges of raising preemie twins and, as I explained to her about Daria’s increasingly difficult feedings and reflux, we learned that her daughter had gone through a similar bout with GERD.  She recommended that we ask our pediatrician to switch Daria from Zantac to Prevacid (Lansoprazole) (http://www.drugs.com/prevacid.html), and shared how this helped her daughter be able to feed again without the pain of acid reflux.  The very next business day we called our pediatrician and he lined us up with a two-month supply of samples of Prevacid.  Since we made the switch, I am seeing less resistance from Daria during feeding time and she has not spit up for the last three days.  We pray this positive trend continues and are hopeful that Daria will learn to associate feeding time with happiness instead of the burn of stomach acid.

Katelynn’s weekly home sessions with her physical therapist is paying off dividends.  While it seems that we are so time-challenged to be able to do all of the therapeutic exercises to help Katelynn stretch, we are pleased to hear from the therapist that she sees significant improvements in our daughter’s physical development.  Jenn-Jen and I still completely understand that this is not definitive evidence that Katelynn will be able to lead a life without physical disability, but we continue to pray and keep our faith that our Lord will strengthen our precious Katelynn each and every day.  Nonetheless, I am witnessing much more coordination when Katelynn uses her hands and feet.  She is bringing her hands midline and reaching for objects more than ever before.  The most promising development is that Katelynn is almost at the point of being able to flip herself from a prone position to being supine, or on her back!  To me, this is quite fantastic in light of my mental and emotional preparation for the potential of physical limitations for Katelynn in the future.

Now, speaking of flipping over, Jenn-Jen and I are thrilled to report that Daria learned how to turn herself over on September 24^th, which happens to be the same date the physical therapist came to work with Katelynn.  In fact, it was not long after the therapist said that Katelynn was learning how to flip herself over when Jenn-Jen and I noticed Daria giving it a try for herself.  We moved Daria to the center of her portable crib and watched as she slowly, but surely transition into the supine position.  It was nothing short of breathtaking!  Jenn-Jen and I joke about how Daria might just have a little bit of competitive spirit in her.

Big brother Adam is continuing to thrive and is enjoying kindergarten more than ever.  We wrapped up a chaotic last week where both the morning and afternoon classes were combined in order to allot time for the first set of parent-teacher conferences.  Jenn-Jen and I have been very curious to hear from Adam’s teacher about our son’s progress, especially because of the joy we see in Adam’s spirit whenever he talks about school.  When I went over Adam’s assessment with his teacher, I was pleased to learn that Adam was excelling and showing a genuine enjoyment of learning.  The results from first page of the assessment did not surprise me, as the expectations in kindergarten are actually not particularly rigorous.  It was not until we reached the second page when we reviewed the results of the Slosson Oral Reading Test (SORT), which is a short, word-recognition test used to assess the reading grade level of the test taker.  Each list of twenty words is progressively more difficult, and mastery requires seven words be correctly read.  Adam surprised with his ability, as he is reading at a solid mid-year third grade level.  In fact, the scoring sheet shows that he was able to reach list 5 (fifth grade) and correctly read six out of the twenty words.  In addition to the SORT, I learned that Adam read error-free at the rate of one hundred words per minute with expression, and correctly answered all but one of the reading comprehension questions.   Adam’s teacher recommended that we consider having Adam take the Gifted and Talented Education (GATE) test at the first available opportunity, which will not be until the end of the first grade.  Should Adam be qualified, it will mean that we may need to enroll him at a different school, but that is still too far down the road for us to even ponder at this time.  I am just very proud of Adam and hope that, as his parents, we are mindful to be consistent and continual in feeding his intellectual hunger. 

I mentioned earlier that we had the opportunity to attend the Special Care Nursery reunion at our hospital on September 20^th.  It was a great event and much larger than we had anticipated.  With the weather being just about perfect, we were able to stay the whole time and had a blast catching up with the nurses and social workers who had been taking care of Katelynn and Daria for the duration of their three and a half month stay.  A number of families whom we became acquainted with were also in attendance, and it was amazing to see how big their babies were now.  Then again, many were saying the same of our precious angels.  The event was very kid-friendly, and Adam loved the various games and even had a chance to hold a rabbit on his lap for the very first time.

Through the reunion, one of the charge nurses conveyed a message to another family who had been in the hospital for some time with their baby daughter.  I was surprised to get a call from Nick, the father, this past Wednesday, and spent some time catching up on everything that has happened since we last met.  The timing was impeccable, as Nick and his wife, Shelly were going to have their daughter baptized on Saturday.  He invited us to come celebrate with his family, but because of the colds spreading through our house, we were unsure if we would be able to attend.  Saturday morning came along and all seemed fine, so we decided to go and were very glad we did.  Nick and Shelly’s daughter is doing wonderfully and perhaps the best part of the experience was to see the parents with smiles on their faces.  During the long and grueling amount of time spent at the hospital in the Special Care Nursery, smiles and laughter come few and far between, so being able to share the mutual joy that we have our children home where they belong is priceless.  Not many can fully relate to what Jenn-Jen and I have gone through between January and May, but Nick and Shelly sure can.

Well, the last couple of weeks sure have been tumultuous, but I really wanted to focus on all the good that has happened since my last update.  As I alluded to earlier, there are still plenty of challenges we are facing, but I am going to save that for my next post.  All in all, life has been good and God has been faithful.  I look at my beautiful family and am thankful beyond words.

In my last post, I had mentioned that I had seriously strained my left side, which resulted from a poor decision to lift a moderately heavy load.  It happened that I had an appointment scheduled to see my doctor to go over my recent cholesterol screening, so I figured I would go over this injury as well.  After a few stretches of my legs, my physician confirmed that I had a classic lumbar strain.  She provided me with some samples of Skelaxin 800mg (http://www.skelaxin.com/skelaxin/index.aspx?text=1), which is a muscle relaxant, and encouraged me to continue taking Ibuprofen for the pain.  Unfortunately, she also told me that this type of injury normally takes about four to six weeks to fully heal.  I am approaching the four-week mark and am still feeling an occasional sharp pain, but am glad to be able to carry the girls again without feeling nervous.

During my visit, my doctor also pulled out my cholesterol screening results.  My numbers have worsened again into the “borderline” zone, and I am really not surprised.  Since the end of January, it has been all but impossible to find spare time for vigorous exercise, and eating heart-healthy often gives way to consuming whatever is readily available or most convenient.  While I am happy to report that I have not gained much weight, I am by no means proud of my backsliding LDL, HDL and triglyceride numbers.  Somehow, I need to carve out time I do not currently have to put physical fitness back into my life.  I have started to be more aware of what I consume, but it remains, and probably will continue to remain challenging to stay disciplined.

On top of my calamities and concerns, I had to overachieve and cause myself more grief by breaking my right contact lens in half.  For those of you that have known me long enough, you probably know that I have horrible nearsightedness that is practically debilitating if I do not have my contacts or glasses on.  Eleven years ago, I nearly lost vision in my right eye because of a retinal detachment resulting from my serious myopia, and even after surgery and the use of corrective lenses, I do not see as clearly as I had in the past.  Unfortunately, after my detachment, I also learned that extended use of my glasses often leaves me feeling somewhat dizzy and the decreased visual acuity is outright annoying.  At the same time, my optometrist has always recommended I keep using gas permeable contact lenses, as they provide the best clarity and oxygen transfer to my eyes.  For this reason, I usually have an older pair of contacts available in case I drop one down the drain or lose it while I am out.  I just happened to remove my right contact and, unknowingly, set it on the rim of my case with a twist-on lid.  As I made the clockwise turn, the unmistakable sound of plastic snapping made my heart sink.  I immediately took out the two halves of the lens and searched for my back-up pair.  Unbeknownst to me, I had already used the right lens somehow in the past and was so discouraged only to find another left lens. 

Fortunately, I was able to go see my optometrist within a couple days after my mishap.  The bad news was that it would take about a week for the replacement lens to arrive.  In the meantime, I tried to fight off the occasional dizziness and drove as carefully as possible.  The last thing I wanted was to be involved in some sort of automobile accident because of my impaired vision.  I quickly learned that driving at night would be even more difficult and tried to avoid that until my contact arrives.

All in all, I really have seen better days, but I am also happy that the twins are continuing to sleep through the night without needing a feed.  This does not mean that the nights are bathed in silence, however, as one of the girls seems always fuss and need turning around three thirty to four in the morning.  To provide Jenn-Jen with enough sleep, I am still spending most of my nights in our guest room.  Since I am blessed with the ability to fall back asleep quickly, I gladly take the baby monitor with me and really do not mind the occasional interruption.  Considering how little sleep we used to get a few months ago, I have nothing to complain about. 

The girls continue to do well overall, but persist in giving Jenn-Jen and me considerable stress when it comes to their feedings.  I will write more about this in the next day or so, but I can say that if this challenge were gone, life would be exponentially easier.  Still, I spend quite a bit of time reflecting upon how small and sick Katelynn and Daria were back when they were born, and this is all it takes for me to stop the complaining and be grateful that God continues to entrust us with the care of our babies.

Adam is enjoying school as he normally does, but we have been seeing some recent behavioral change in terms of following instructions.  This seems to not only be an issue at home, but at school as well, and I am trying not to let it eat at me.  Jenn-Jen and I are concerned that the misbehavior may be attributed to the decreased attention Adam has been receiving from us lately, as Katelynn and Daria’s feeding challenges have been sapping away at our time and attention.  Again, I will spell this out in more detail in my next post.

Time continues to creep up on us.  The days often seem like they will never end and life, sadly, continues to revolve around Katelynn and Daria’s feeding schedule.  Still, I am mostly astonished and somewhat saddened that two weeks have passed and yet, I am finding myself unable to journal regularly.  Life right now feels like I am jumping between moving cars and I keep telling myself that things will eventually slow down.  In the meantime, I am doing my best not to get run over.

This past Wednesday, Jenn-Jen and I had decided to venture out to Costco with Adam, Katelynn and Daria to pick up our household staples and boxes of contact lenses that we had recently ordered.  As is the case with many retailers, Costco has made an effort to reduce waste by selling heavy-duty reusable shopping bags.  Personally, I love these bags and their generous capacity, both in volume and weight.  The problem is that Costco may have made them too well, as I decided that I would try to be more efficient and load up the bags with numerous heavy items we had purchased.  I really never felt the injury as it happened, but by Wednesday evening, I could tell I was in for some serious pain.  Since then, I have been taking Ibuprofen and receiving deep-tissue Bengay rubs by Jenn-Jen twice daily.  Unfortunately, the strain is one of the worst I have experienced and it has been difficult at times to carry Katelynn or Daria without feeling a sharp twang in my left side.  A few instances, the pain has actually been severe enough that I had to quickly set down one of the twins and lay prone for relief.  Just as the injury seemed to be healing yesterday, it came back with quite a vengeance this afternoon.  Sometimes it just does not pay to try to save time by overburdening myself.  Hopefully my muscles will heal quickly and I can be rid of this aggravation soon.

As for the rest of the family, Jenn-Jen is doing well overall but is still struggling with the effort involved in keeping up with pumping.  It has been over seven months since she started expressing her milk and the time and monotony involved in the process often feels unending.  Fortunately, she has started reading some new and interesting books and this is providing some mental relief.  If it were not for our belief that breast milk provides the best nutritional benefit for our girls, Jenn-Jen would gladly take herself off the five pumping sessions each day that have, at times, felt like prison terms.

Adam continues to soak up Kindergarten with joy and daily anticipation, but is also learning the lessons involved in following other classmate’s inappropriate actions.  As many times as Jenn-Jen and I have tried to instill in our son the concept of doing what is right, we often lose sight of the fact that Adam is still only a five year old boy.  With the burdens we have experienced this year, sometimes we ask so much out of our eldest child.  He has certainly been forced to grow up in many ways, and for this we are proud of his sacrifice and mature attitude.  I still make it a point to spend consistent father-son time with Adam, and we actually had a very enjoyable time flying our kites at the park this morning.

Katelynn is packing on the ounces nicely and has adjusted well to her feedings.  We still supplement Jenn-Jen’s milk with a small amount of premature infant formula for extra calories, and all signs point to healthy weight gain.  Katelynn is now at 13 pounds 6 ounces and continues to chase the growth curve associated with a full-term infant.  Best of all, we are seeing a significant reduction in the level and frequency of resistance from Katelynn during her feeds.  This has been such a struggle for us for so long, it is definitely an answered prayer to see her take the bottle with minimal fuss.  Additionally, Katelynn is showing us great signs of development through her active smiling, chatter and apparent full use of her hands and feet.  There are still so many unknowns when it comes to her physical development, but I will take the victories as they come.

Daria is not packing on the ounces like her sister and, in fact, has stagnated in her weight gain.  At the doctor’s appointment on Thursday, she weighed in at 12 pounds 6 ounces, a whole pound lighter than Katelynn.  Although Daria is now consistently taking the same volume of milk as her twin, we continue to fee her without the extra formula supplement.  I am fairly certain the formula had caused Daria indigestion in the past that inevitably led to vomiting, and so far, she has kept her feeds in much more so than before.  Unfortunately, this means Daria takes in slightly fewer calories than Katelynn and only recently has she equaled Katelynn’s feed volume.  I pray that the catch-up weight will pick up its pace so that there is not so much of a weight gap between the girls.  To complicate matters, Daria remains extremely difficult to feed and each session still leaves Jenn-Jen or me tired or frustrated.  We have scheduled a feeding clinic session through Easter Seals next week, so I am hoping there will be some advice that may help get Daria back on track for better feedings.  In the meantime, our pediatrician has suggested we throw in some rice cereal for calories every so often between feedings.  As Daria has not gained much weight at all, I regret to say that she has fallen off the growth chart for a full-term infant.  Please keep this issue in your prayers, we could use the encouragement.

Now that we are into September, we find ourselves completing another month of Katelynn and Daria’s life.  It does seem a little strange that the twins are now seven months old and before long, we will be celebrating their first year birthday.  Where did the time go?  Jenn-Jen and I always joke about the day in the distant future when we can take a vacation or even have a date night again, but each time I look at the calendar, I simply feel that the past seven months have been a blur.  I am grateful we have captured the memories through photos, video and especially our blog.  Sometimes I wish I could look into the future to the day when Jenn-Jen and I sit down with our children and talk about the amazing journey each of them had as preemies.  Then again, we are thoroughly enjoying our moments seeing our Adam, Katelynn and Daria surprise us with new revelations each day. 

In concluding this week’s update, here are a number of pictures of the family:

Daria sleeping peacefully on her hand ( 08.03.08 )

Our attempt to sit up Daria (left) and Katelynn (right) on the sofa ( 08.12.08 )

Daria (left) and Katelynn (right) decide to look at the camera ( 08.12.08 )

Katelynn (left) and Daria (right) content on the mat ( 08.13.08 )

“Content?  No way, we’re ready to party!” ( 08.13.08 )

Taking Daria (left) and Katelynn (right) out for a morning stroll ( 08.15.08 )

Daria is getting ready to chew on her little blankie ( 08.18.08 )

As close as we can get to having all three of our kids sitting still ( 08.24.08 )

As the conclusion of 2008 Summer Olympics in Beijing is drawing near, I find myself amazed at the feats of athleticism and discipline demonstrated by the teams and individuals in their efforts to secure gold medals and national pride.  I am by no means a runner, but I heard the commentator make a remark during the women’s marathon event in which I can draw a familiar parallel.  To paraphrase, the comment was something to the effect of:  “You can split a marathon into two equal parts, the first twenty miles and the last six.”  When I heard those words, it really made me ponder the “marathon” we have been enduring since the birth of Katelynn and Daria.  In many ways, I feel that we have made it through the first half of our journey, which involved all the heart-wrenching aspects related to extreme prematurity.  From the early days of life-threatening infections and painful memories of seeing my babies breathing only with the help of a respirator, up until the end of their three and a half month hospital stay, life always felt so fragile and precarious.  Now that the twins have been home with us for over three months, it almost seems as though these are not the same tiny infants that brought us so much worry not so long ago.  I cannot say exactly when I came to the realization that Katelynn and Daria are beginning to develop in ways not so different from their full-term counterparts, but it has definitely been an answered prayer each time I witness another new behavior from one or both of the girls.

Since the girls’ birth, I have been documenting their growth most often through the keyboard and digital camera, and less often with a camcorder.  It was not until a couple of days ago that Jenn-Jen and I took out the video footage of Katelynn and Daria taken the night of their birth.  I would not be honest if I did not say that it was quite difficult to watch, and it is for this same reason why I had decided against posting digital photos of the twins in their early days.  There is something akin to a sanctuary of privacy when it comes to those images, one that should not be made so open to the world.  Sometimes I feel strange in being protective in such a way, but I also know well that the feelings that the photos and video clips bring out could probably never be fully understood the way only Jenn-Jen and I could. 

What was so amazing was for Jenn-Jen and me to spend some private time watching how frail and helpless Katelynn and Daria appeared almost seven months ago, and to compare that to the scenes I captured only a few days ago.  The progress the girls have made is nothing short of miraculous!  Katelynn actively smiles and tries to make conversation on a regular basis now, and we are definitely seeing Daria’s playful nature each time we interact with her.  Just watching the recent videos almost makes me forget how difficult our journey has been and how close we came to losing our babies.  I continue to thank the Lord everyday for giving us our children and I just hope these blog posts, digital images and videos will always remind me of His faithfulness in answering our prayers during our moments of fear and desperation. 

Earlier I had mentioned that it feels as if we are moving into the second half of our personal marathon in raising our twins.  We continue to have Katelynn and Daria sleep through the night, but we still battle with being woken by the girls’ nighttime noises.  Whether it is a little cough, sneeze or cry, our baby monitor does its job well and we seem to hear every detail.  Let me correct that… Jenn-Jen seems to hear everything and I have the gift of selective hearing.  It is for this reason that my wife and I debate whether we should spend our nights in the same bed.  I value Jenn-Jen’s need for uninterrupted sleep, as it makes for a more refreshed wife and mother during the days, but I also know that it is not feasible to continue spending our sleeping hours in separate rooms.  Recently, I have conceded to rejoining my wife during our unconscious hours, but am still hesitant each time I learn that either Katelynn or Daria made some noise that woke up Jenn-Jen but left me in perpetual slumber. 

Through our services with Alta California Regional Center, I am pleased to report that Katelynn has begun her weekly physical therapy sessions.  We have been very happy with the physical therapist and are praying that all of the early intervention will pay off in dividends in our daughter’s motor skill development.  It still amazes me to think that what appears to be nothing more than stretching exercises can do so much in making a difference with mobility as Katelynn continues on her developmental path.  Jenn-Jen and I are constantly concerned about the long-term possibility of cerebral palsy in Katelynn’s future, so we vow to put every effort into doing all we can to help her have the best chances.

The respite help we have been receiving continues to be a huge blessing.  With my parents coming less frequently, as well as their upcoming trip to China, we are relying much more on United Cerebral Palsy’s respite program to provide us with the extra hand to help care for the girls while I am working during the week.  We have found one particular worker whom we feel quite comfortable with and have been asking her to be our primary source of assistance.  Since we are allotted a limited number of respite hours, we continue to fill the gaps with assistance through my parents and friends from church.  I still do not know how other families would do this without help.  Perhaps I will feel even better once Katlelynn and Daria become better at their feedings, so much to the point that others will feel comfortable giving the girls their bottles. 

Speaking of respite and travel, I am becoming more and more concerned about my upcoming business trip to Orlando in mid-October.  Each year for the past six years, I have had the privilege of attending my company’s flagship client Symposium at the Happiest Place on Earth, a.k.a. Walt Disney World.  This year will be no different, except I will be leaving Jenn-Jen, Adam and the twins alone for five days.  We are working to squirrel up our respite hours and use them while I am away, but without my parents’ help, it is going to be quite a challenge to make sure Jenn-Jen is receiving enough support.  We just keep praying the girls will be good enough feeders so that the burden will not rest solely on Jenn-Jen. 

As for the rest of our family, Adam continues to do well and is thoroughly enjoying kindergarten.  With the school being as close as it is to home, Jenn-Jen and I are trying to make an effort to devote some time to help out in the classroom when the opportunity arises.  I made my debut by spending my lunch hour on Friday helping the kids tie-dye t-shirts they will don regularly in class.  While it will be difficult to help consistently, we really want Adam to be aware of how much we want to be there for him throughout his school years. 

This weekend has also been busy with the arrival of Jenn-Jen’s father from Southern California.  He has not been up to see Katelynn and Daria since they were still in the hospital, so it is great that he is able to see the monumental progress the girls have made since then.  We do not get to see my father-in-law very often, but it especially warms my heart that Adam accepts him so quickly, as if it has only been a few days since they last met.  As short as the visit will be, we are always glad to have Jenn-Jen’s father here.

On my agenda for the rest of the weekend, outside of seeing off my father-in-law and watching the closing Olympic competitions and ceremony, will be to organize and put up some recent pictures of the family.  I am still working slowly towards setting up online photo albums outside of the blog, and given the amount of time I am investing in reconnecting with old friends through Facebook, I may want to use that as my medium.  Time still seems to be the scarce resource, so wish me luck.

God bless friends, family and loved ones.  Our marathon continues on, but have we made progress!

I think I will start with good news… Once again, we are having the girls sleep through the night and shifted to “on demand” feeding until morning comes.  It has been a blessing to finally be able to get prolonged sleep, and believe it or not, Jenn-Jen and I are even beginning to sleep together in our bed once more.  We still joke about how it is strange to have to share the sheets and comforter after such a long period of having them all to ourselves individually.  Personally, I am still feeling a little torn about all of this, as Jenn-Jen tends to be a very light sleeper and I am quite the opposite.  This often results in my wife hearing the girls make tiny noises over the audio monitor, which inevitably means she is up and about checking on Katelynn and Daria during all hours of the night.  I, on the other hand, will go through the night unconscious, oblivious and have no recollection of any disturbance whatsoever.  We will have to see if this has any ill long-term effects on Jenn-Jen’s level of energy during the day.

We are also thrilled that Adam started Kindergarten on Monday, August 11th.  He is jumping out of his pants every morning in anticipation for school to start, and it really warms my heart to see him so motivated and excited to learn.  I keep telling myself not to become one of those fathers that thinks his kid is some genius or prodigy, but Adam sometimes really does astonish me with his level of thinking.  A very solid example stems from a conversation we had in the car the other day.  To the best of my recollection, the conversation went something like this:

Adam:  “Daddy, here’s a math problem.  A is equal to one, B is equal to two, C is equal to three, and D is equal to four.”

Me: “OK, so what is the math problem, Adam?”

Adam: “A plus A equals B, and B plus A equals C.”

Me: “That’s great!  So here’s a question:  what is B plus B?”

Adam (answering almost immediately): “That’s D.”

Me: “Wow, very good, so here’s a challenge.  What is Z minus B?”

Adam (answers in less than five seconds):  “X.”

What really floored me about the exchange we had was the fact that Adam devised this system of elementary algebra completely on his own.  Jenn-Jen and I thought it was already impressive that our five-year old son has asked us to teach him basic multiplication and simple fractions, and already reads at a second to third grade level, but his initiative and level of abstract thinking just does not seem normal for his age.  We continue to work on fun ways to keep him challenged and will be very involved at school to support his desire to stretch his intellectual capacity.

As for the twins, both Katelynn and Daria are showing a lot of character and milestones that are to be expected for babies at a three month developmental age.  While Katelynn has been slightly slower than Daria in demonstrating skills such as smiling, cooing and playing with toys dangling nearby, it truly warms my heart to see her expressions and hear her voice given her questionable developmental prognosis.  Of course, there is still so much ahead of us, but I can assure you that I do not take these moments for granted.  As I learn to use my newly acquired Canon HG10 camcorder, I will try to post a video of both girls in action just to share the joy I experience every time I see them enjoying the gift of life.

Our lifestyle and daily routines with the girls are slowly, but surely, transitioning into the closest thing to normalcy as much as we have ever seen.  We have been bringing them to church regularly now, made one trip to Costco, made another to WalMart and Staples for Adam’s school supplies, and even ventured out to eat out for lunch last Sunday.  It is almost like a major mental and emotional victory when you can pack up the family and do things that once used to be so ordinary.  I really never thought I would enjoy going shopping with Adam in tow and the girls in their double stroller.  We have certainly come a long way, and somewhere, somehow, I was even able to find the time and energy to wash our car and mow our front and backyard lawns.

Speaking of how far we have come, we had the county public health nurse come in today to perform her regular assessment of us and the girls.  During these visits, the nurse makes it a point to measure the girls’ growth.  I am to say that Katelynn now weighs 12 pounds 15 ounces, and measures 24.5 inches long.  Daria’s growth has slowed, but she is still progressing with a weight of 12 pounds 3 ounces and a length of 23 inches.

The respite services through United Cerebral Palsy has been been a huge blessing in our home.  By having a funded respite worker come in and help be that “extra hand” to care, comfort and play with Katelynn and Daria, we have been able to rely less on my parents for supplemental childcare support.  I am a staunch believer in doing my best not to wear out my welcome in any circumstance, and this applies even with close family members who are near and dear to my heart.  Caring for such premature babies that do not follow the same developmental patterns as equivalent full-term infants can be extremely tiring, especially under prolonged circumstances.  As parents, we would do anything for the sake of our children, and the reality is that we would never expect anyone else to sacrifice so much of their time and energy to ensure our Katelynn and Daria are well taken care of.  For this, Jenn-Jen and I are thankful beyond words to my parents and sisters for the countless days, weeks and months they have provided support for us.  I am extremely grateful that Jenn-Jen and I have found a couple of respite workers that we are using a little more consistently so they can feel comfortable with our girls.   

Now, onto the not-so-good news… 

Daria has been a source of immense joy, concern and frustration for Jenn-Jen and me during the last week and a half.  I had mentioned her sudden loss of appetite and interest in feeding during my last post, and was hopeful she would be coming out of this slump soon.  Unfortunately, the results of our change in her feeding volume and the removal of the premature infant formula supplement has brought mixed results.  After tweaking the amount of breast milk per bottle to a level that balances adequate calories with minimal vomiting during the feeds, we have come to a consensus that 120 milliliters, or a hair past four ounces, is roughly the limit Daria will take every three to four hours during the day without returning a mess and increasing our laundry load.  For the past week or so, she has been taking most, if not all of the milk in her bottle, but the aggregate amount is still considerably less than where she used to be before the change in her feeding behavior.   Even with good feeds, Daria’s slowing weight gain is troubling when compared to the expanding gap with Katelynn’s measurements.  We are making arrangements to bring the girls in to a feeding clinic to have their oral motor skills assessed.

Work has been keeping me very busy during the weekdays and as I have done so for the past six years, I will be attending my company’s flagship Symposium event in Orlando in October.  On one hand, I am excited and eager to reconnect with my clients and colleagues in person, but on the other, it is going to be extremely taxing for Jenn-Jen to not have me around for five days.  We will do all we can to squirrel up our respite hours so that there is enough support here at home, and to complicate matters, my parents will be out of the country in China during my absence.  My prayer is that Katelynn and Daria will somehow dramatically improve their abilities to feed so that the burden does not reside solely on Jenn-Jen while I am away.

Despite our decision to allow the girls to sleep through the night, Jenn-Jen and I are still quite tired from the long road we have traveled.  I am trying to drink less coffee to keep myself awake, but honestly, it is difficult to remain alert and focused even now at 1:15 AM.  I feel that there is still so much more on my mind, but fatigue and the better part of discretion is telling me that it is best to call it a night and get a good night’s rest.  I may be unrealistically optimistic, but I am going to try my best to squeeze in more time to post an update and some pictures in the next day or two.  In the meantime, I am going to try my hardest to slip quietly into my bedroom and not disturb Jenn-Jen from her much-needed rest.  Good night and blessings from the Owyang home.

James 5:7-8 New International Version

I have finally found some peace and a rare moment of refreshing silence and clarity to share the highlights of the past week.  Times such as this seem so rare nowadays, so I treasure them deeply when they do come.  There is no doubt God is shaping me daily as it relates to my patience, which has so often been depleted in the recent past.  I am troubled to find myself more easily frustrated and realize that my mood often correlates directly with how well Katelynn and Daria are doing.  As much as I want to believe I have answers to the challenges that stand before me, the Lord reminds me to turn away from leaning on my own understanding and have faith in His purpose, which is often beyond my comprehension.  Through His refinement of my patience I hope to gain revived strength, a miraculous showing of strength demonstrated so well by Katelynn and Daria’s six months of life we celebrated on Monday, July 28th.

Perhaps there is some irony in my decision to entitle this post “Six months strong.”  There is no argument that the twins are growing stronger each day, and each time I look back at their early photos and blog entries from months past, I am truly in awe of the progress they have made.  What is ironic is that in the course of their development, I believe Katleynn and Daria have honed their will to survive and fight so well that they are now applying their strength in ways that leave Jenn-Jen feeling weak and utterly exhausted.  Specifically, both of my girls have learned that they can fight and resist feedings, resulting only in sheer aggravation and disappointment for their parents.  It is this feisty resistance coupled with a very poor ability to latch that has prevented Jenn-Jen from being able to effectively breast feed Katelynn and Daria, and unfortunately, the fight has now progressed to many of the bottle feeds.  Katelynn has been difficult to start during meal times, but she has consistently shown us that she will finish her milk once we get the nipple in.  Thankfully, as of the last few days, we are actually seeing improvement in terms of reduced resistance, which is bringing about more peaceful feeding times.  Daria, on the other hand, has caused us nothing short of an ulcer.

For reasons we still cannot pinpoint completely, Daria began to lose interest in taking milk roughly two weeks ago.  At one point not long ago, Daria was infamous for her voracious appetite, and the proof of which was quite evident in her very chubby thighs and cheeks.  Since then, our daughter has done everything short of declaring a hunger strike.  Now, the majority of the feedings have become a battle of wills between the parent, intent on maximizing caloric intake, and little Daria, treating the milk as if it were some poisonous concoction.  While it would seem that it should not be so difficult to make a baby feed, if by nothing else, the sheer imbalance of physical strength, let me tell you otherwise.  Up until a few days ago, Daria would cry, flail and resist to the point where we would only be able to get her to take a third to a half of what she should normally.  The cause of alarm truly came to a head when we brought the girls in for a follow up visit with our pediatrician on Tuesday, July 29th.

Katelynn showed tremendous progress in catching up on the growth curve and weighed in at 12 pounds 2 ounces.  Our celebration was very short lived once we learned that Daria came in only at 11 pounds 14 ounces, a quarter pound lighter than a week prior.  The four ounce loss, in our minds, became a blaring alarm that Daria was definitely not taking enough milk.  Our pediatrician tried to bring us back to our senses by putting it all into context.  Daria actually did gain weight since her last official appointment, and had it not be for an unscheduled visit to the office last week for a weigh in, we would not have considered this a decrease.  No matter the reasoning, the way Jenn-Jen and I saw it was that the unwelcome results indicated we needed to take measures to bring Daria back up.

After some discussion with our doctor, we hypothesized that Daria may be having issues digesting the small amount of premature infant formula we have used to supplement each bottle.  Breast milk is absorbed very quickly by the digestive tract, often in the matter of twenty minutes or so, and as far as formula has come to try to mimic breast milk, it still differs in its rate of absorption.  The formula can actually stay in a baby’s stomach for two or three hours after intake, and our guess is that this delay is creating a backlog of residual milk in Daria’s poor digestive system.  So we came to an agreement that two things would change, at least for the time being.  Daria would go back to a schedule where we would not skip one of her early morning feedings and all formula supplements would be suspended.

Since the change, we have seen improvements with Daria’s feeding volume.  She is still no where near the capacity she used to show in weeks past, and there is no longer the extra calories supplied by the small addition of formula in her bottle.  Still, it has been a psychological boost, if nothing else, to see less milk remaining at the end of the majority of Daria’s feeds.  We pray this slump is a very temporary set back and are doing our best to be cognizant of any discomfort Daria may be having due to an upset stomach.  Consequently, I have adjusted my sleep pattern once again to accommodate an extra feeding in the middle of the night.  Since Katelynn continues to do well with her schedule, we left her feeding schedule unchanged.  I expected to feel more tired physically from this, but it is the constant concern and focus on every little ounce on Daria that has been a mental and emotional drain.  We sure could use your continued prayers that this setback will not discourage us and create a negative atmosphere whenever we try to get Daria to feed.

On a more upbeat note, I was pleasantly surprised to reconnect with an old friend from San Diego whom I have not spoken with since the year Adam was born.  Since we spoke last, my friend became a married man and father, much to my joy and surprise.  What was even more unexpected was when he informed me he had a potential career opportunity up here in Sacramento and made an impromptu decision to fly up with his wife to get a firsthand perspective of our city.  Through some quick decision making, we had the pleasure of extending the use of our guest room for our welcomed houseguests during their brief overnight visit.  Adam and I even had the opportunity to take my friend and his wife around town to show them parts of downtown where he may end up working.  As their stay was very short, we bade them farewell the next evening, but enjoyed having their company and the satisfaction of reestablishing a friendship from years past.

With the ups and downs we experienced during the week, we have some more positive news to report.  Jenn-Jen and I brought Katelynn and Daria in to see our ophthalmologist on Friday, August 1st, and all is looking very promising.  Katleynn’s retinopathy of prematurity (ROP) seems to be in complete remission and we officially no longer need to bring her in to see this specialist.  Daria’s more serious ROP condition has also stabilized nicely and, for good measure, we will need to bring her in one more time in a month to confirm her positive prognosis.  Both of our twins will then be seen by another pediatric ophthalmologist, who does not specialize in retinal disorders.  We have been warned that there is a possibility one or both of the girls may need to wear glasses, even in their infancy.  As nearsighted as Jenn-Jen and I both are, I have come to terms that our children will not have the best eyesight.  We just count our blessings that the three rounds of laser eye surgery and the ten days Daria and I had to spend in Walnut Creek during the last operation have amounted to God answering our prayers to save our little angels’ vision.  Indeed, we praise the Lord for the good news!

In concluding this long and overdue blog update, I wanted to share some photos of the family.  I regret I have not been as diligent in taking pictures, even on the girls’ six month birthday, as it is evident in the poor lighting of the fourth and fifth images below.  I just could not bring myself to lighting up the room at night for the purpose of getting a better looking photo.  Still, as I look these captured moments, I stop to smile and remind myself to take the advice regarding patience given in the scripture that opens this post.  Thank you all for checking in with us and the reminders that we are still in your prayers.  It means the world to us.

Adam is excited to bring his sisters to church for the first time ( 07.13.08 )

“To eat or not to eat, that is the question…” – VBS Sunday at church ( 07.27.08 )

“Without a doubt, to eat!” – VBS Sunday at church ( 07.27.08 )

Sneaking in a picture of Katelynn on her six month birthday ( 07.28.08 )

Sneaking in a picture of Daria on her six month birthday ( 07.28.08 )

Katelynnlooking comfortable with her colorful monkey toy ( 08.01.08 )

Grandma and Daria hanging out in the family room ( 08.01.08 )

During the previous month, I noticed a significant change in behavior with the bird couple.  For one reason or another, they decided not to roost high up in their nest anymore and opted to sit up on the stuccoed framing right above our front door.  There really is not much room for comfort, with no more than an inch of flat surface protruding out, yet the swallows insisted on perching there every night.  I would come in and out through my front door, usually to pick up mail, and be within two arm lengths from the pair, but this did not phase them in the least.  After seeing the unpleasant consequences of their continued habitation accumulated, mainly in the form of droppings and feathers, I decided I would make that one-inch perching area less comfortable by setting a carpeting tack strip across the area.  I was quite certain the periodic spacing of the short nails pointing upwards would force the swallows to find alternate lodging at night.  I could not have been more mistaken.

During the next week or so, I soon learned why the swallows were so persistent in sitting atop our front door.  One evening, I had decided to step out once again to retrieve my mail and noticed the birds were resting in their usual spots, no doubt creating more white splatters of swallow droppings across my front door.  Taking a few more steps out, I looked up to their nest and to my surprise, I found four hatchlings peering down at me!  All of a sudden it became crystal clear… the parents did not plan ahead with their construction plans and outgrew their home when the kids arrived.  The nest would only fit the babies now, yet the parents wanted to remain close by to keep watch over their brood.  Part of me felt congratulatory toward the swallows for their four new blessings, but another part of me was wondering when they would migrate away so I could finally be free of bird droppings near and on my front door.

As a couple weeks passed by, I would make it a point to take a minute or two to watch the baby birds every day to see the progress of their growth.  It was always delightful to see them peek down at me and even more so to hear them chirp in excitement when one of their parents returned.  Last week, I had the pleasure of spying a parent swallow fly towards my home with an earthworm tightly clasped in its beak and it warmed my heart to think that these little hatchlings were getting bigger and stronger each day.  A few days later, I was only able to count three heads staring down at me and I could not help but wonder if the fourth had voluntarily left the nest or if it had succumbed to illness or a predator.  Since I could not find any evidence of the later, I told myself the missing bird must have flown the coop.

Tonight, Jenn-Jen stepped outside and noticed another change.  The three remaining baby birds were no longer in the mud nest as they normally are during the night.  I had suspected the young hatchlings were readying themselves for life on their own, as I thought I saw two of them perched on the window sill outside my home office.  Jenn-Jen did say one of the parent birds has reclaimed the nest while the other roosts atop my front door, dropping away.  I will keep a closer eye on the swallows’ home each night, but I have a feeling we are nearing the end of their tenancy. 

Thinking more and more about the adventures of the swallows outside my front door made me contemplate how our lives are not so entirely different.  Tomorrow will mark Katelynn and Daria’s six month birthday, and I find it oddly coincidental that the hatchlings have progressed to a phase in their lives where they show marked development and maturity.  While our little angels are no where near becoming independent, I could not help but reflect upon how far along they have come since that joyous, yet frightful January Monday when they decided to make their entrance to the world.  Katelynn and Daria are now both over twelve pounds, which is more than six times their birth weights.  They are sleeping through one of the night feedings, more or less, on a consistent basis, and this allows me to attempt to catch up on my sleep too.  Both girls are definitely becoming more interactive with their smiles, cooing, and use of their hands to swat at dangling toys and milk bottles when choose not to cooperate with their feedings.

So the more I think about the bird family just outside my house, the more I have come to realize that my babies are getting bigger and stronger each day.  One day, they will surprise Jenn-Jen and me with an uncoordinated attempt at mobility.  Soon thereafter, they will hold conversations with us as their big broth Adam does with logic and persuasion.  Then, one day, they will leave behind them an empty nest, except for the proud parents Jenn-Jen and I most certainly consider ourselves to be. 

I cannot help but chuckle to myself, thinking of these events that seem so far out in the horizon… yet, it astonishes me how quickly these six months have passed.  There are still many unknowns ahead of us, given the developmental complications that may arise from Katelynn and Daria’s extreme prematurity.  As we have done in the past and continue to do today, Jenn-Jen and I can only do the best we know as parents to our children and pray to our Lord that He provides us with the strength, patience and discernment to follow His leading in our journey. 

More photos are on their way and, believe it or not, I am still striving to put up a post more often than once a week.  Lord, I am praying for a few portions of serious time management skills and a few more portions of physical and mental energy.  I thank you God for providing us with resources to lighten the burden and ask you bless all of those who have been fervently supporting our family since our marathon began over six months ago.

Having said that, our family is actually quite well.  Going back to June 11th, Jenn-Jen and I brought Katleynn and Daria to our Ophthalmologist/Retinal Specialist to have him follow the progress of Daria’s eyes.  As much as we loathe the discomfort Daria is forced to endure so the doctor can examine her retinas, Jenn-Jen and I know that it is critical for Daria to undergo this to ensure the viability of her eyesight.  Thankfully, all checked out well once again and we learned that Daria’s retinopathy of prematurity (ROP) has regressed significantly.  We have another examination scheduled in three weeks, and if we continue to see the stability we have seen thus far, Daria will no longer need to come back to this office.  Nonetheless, both she and Katelynn would still need to have a less frequent eye examination with the pediatric ophthalmologist to address other potential eyesight issues.  The girls may actually need to wear glasses as babies, but we will cross that bridge if we come to it.

As for additional outings, I am excited to report that we brought Katelynn and Daria to church for the first time on July 13th.  Like any proud father, I equipped myself with my camera and our new camcorder to record the girls’ first trip outside home that had nothing to do with seeing a doctor.  I still need to set aside the time to go through the images and video, so there is more to come soon.  I can tell you that bringing the whole family to church is a bit of a logistical endeavor, which required the proper packing of bottles, hot water for warming the bottles, diapers and burp cloths, and coordinating this with the time-consuming feeding schedule.  As much as I would have enjoyed worshipping peacefully together in the church sanctuary, reality dictates that we would have a very disjointed experience.  By choice, Jenn-Jen essentially spent her time feeding Katelynn and Daria one at a time out in the atrium while I brought the non-feeding twin into the sanctuary to catch bits and pieces of the sermon.  Adam, on the other hand, would not notice any difference, as he spent his time in Splash, part of our church’s amazing children’s ministry.

Even though attending church was nothing near what it used to be pre-Katelynn and Daria, Jenn-Jen and I had a wonderful time catching up with our dear church family.  Many of our good friends at church have read and heard so much about our twins, and we wanted to finally introduce them to the miracles the Lord has so generously given to us as blessings.  Our goal is to continue to come to church consistently, barring any illness or crazy nights preceding, and I am happy to say that we were able to come out for Sunday services once again today, July 20th.

Jumping back yesterday to Saturday, July 19th, Jenn-Jen and I were crazy enough to take Katelynn and Daria out to Costco to replenish our pantry and cupboards with much needed food and supplies.  If you know me well enough, you will learn that Costco is one of my favorite places to shop.  It has been months, if not half a year, since we have made a significant Costco trip, so the cart ended up being quite full this time.  Of particular note was the astonishing cost for diapers and baby wipes!  Two hundred and fifty two diapers sound like they would last for months on end, but Katelynn and Daria still go through them quickly with their seemingly healthy digestive systems.  I still remember how good it felt on the pocketbook when Adam was successfully potty-trained.  Now if there was only a way to teach the girls to give us some sort of sign they need to pee or poop… 

I digress with diaper talk once again… The trip to Costco was actually very therapeutic for me, despite the warehouse store being filled with a plethora of weekend shoppers.  If anything, this outing provided a psychological boost, as it marks a milestone in our return to a “normal” life that includes human contact outside the confines of our home.  We were even able to find a nice, semi-private area where we were able to feed Katelynn and Daria comfortably.  It just so happens that it is that time of year when Costco is stocked with a nice selection of furniture, so we had our pick of floor sample sofas and chairs to “test drive.”  I just kept praying that Daria would keep the milk in and not use the fine microfiber recliner Jenn-Jen settled into for target practice, else we may have our membership revoked and pictures posted near the entrance like they used to do with fugitive mugshots in post offices across the nation.  Thankfully, both Katelynn and Daria did just fine and we headed home with our minivan packed full of our newly-purchased necessities.  The experience went so well, I think we can come back next month, unless they stop selling those comfy sofas and chairs.

Now, going back a few more days to Wednesday, June 16th, we had the opportunity to have our first respite care worker visit.  Right now Jenn-Jen and I are scheduling the minimum two-hour slots to interview a variety of workers to see who we “gel” with the best.  The worker that came seemed like a nice enough lady, but we are still very early in finding a match with two or three individuals who we will establish a more regular relationship.  Ideally, we are looking for someone who has experience working with infants, preferably multiples, but it is vital we feel comfortable with this individual that we plan on bringing into our home as a trusted part-time caretaker for the girls.  For the foreseeable future, we plan on having our respite workers aid us as an extra set of hands to provide comfort and care in addition to Jenn-Jen or myself during the weekdays.  With the limited hours of care allotted to us each calendar quarter, we still need to figure out the best way to parse out the scheduling to best meet our needs.  Some families actually squirrel up their hours and use them all in one fell swoop at the end of the quarter just to have some time to get away.  Given our situation, we see respite coming in handy more so for short, frequent visits to provide stress relief and, as sad as it may sound, time to take a shower or perform household chores. 

I still find it amazing that another week has passed since I last updated the blog.  Where the time goes is beyond my comprehension, especially as we are still living our lives with either Jenn-Jen or myself by Katelynn and Daria’s side all the time.  I looked at the calendar and realized that this past Friday, July 18th, marked the sixth month anniversary of the date when Jenn-Jen was admitted to Sutter Memorial Hospital with severe pre-term labor.  It really is hard to believe Katelynn and Daria were born ten days later, and now, here we are almost half a year out.  I thank my God everyday that our whole family is still here with us today, yet I know that His plans may not always be what we want or expect.  I suppose my personal challenge is to continue to put a little more trust and faith into His perfect will each day.  In my prayer time, I always try to remind myself that God has brought me and my family this far with blessings beyond what I would have ever imagined, but there is always that fear and doubt which is undeniably clouded by my sin that presents the constant battle of faith I must undertake every day.  Dear friends and family, the life we have been living since our world changed six months ago can, at many times, be hard enough in itself.  I just cannot imagine going through this without my Jesus carrying me through the depth of all the valleys and the seemingly insurmountable mountains that have marked my life since the end of January.

Please enjoy the pictures here and copied in the Photos page.  I will make every effort to begin posting more frequently beginning this week.

Katelynn (left) & Daria (right) sleeping comfortably after a bath ( 07.03.08 )

Our family on Gordon’s birthday ( 07.03.08 )

Katelynn and Adam look ready for some birthday cake! ( 07.03.08 )

“Hey Daria, pffffffthhh!!!” ( 07.04.08 )

“Oh, sorry, did I get your face?” ( 07.04.08 )

“It’s ok Katelynn, I’m used to it!” ( 07.04.08 )

“OK, did I tell you I love being your sister?” ( 07.04.08 )

“Yeah, me too, now can you help scratch my ear please?” ( 07.04.08 )

“Sure thing Daria, does that feel better?” ( 07.04.08 )

“Hey Daria, Mom & Dad got us a pinata!” ( 07.11.08 )

“Cool!  What’s a pinata?” ( 07.11.08 )

Isaiah 26:12 New International Version

The week has been quite hectic for the Owyang family, but we have been busy in a good, productive way.  From a personal perspective, I feel more in control, less frustrated and much better overall compared to last week.  Our lives do feel a bit more orderly now, but this is only made possible through a combination of one measure of focused effort and three measures of prayer.  I am still struggling to make time with the Lord regularly, but am slowly working my way back into dedicating part of each day (or night) to renew my spiritual life. 

Monday was an exciting day for Adam.  Our son returned to his second week of summer session at his preschool, with the new exciting theme of pirates, which happens to be another one of Adam’s favorites.  Additionally, we began swimming lessons in the afternoon after a prolonged period away from the pool.  Adam had been very nervous about going underwater again, but it did not take long for him to remember all the fun and excitement he enjoyed last year.  With Adam in school and attending swimming lessons, Jenn-Jen and I feel thankful that our son no longer finds himself bored.  I have committed myself to not only bring Adam to swim Monday through Thursdays, but spend some time with him after his lessons to help him practice what he has learned.  So our new routine goes something like this: Adam is away for thirty minutes with his swim instructor, I find an open lane nearby and swim a few laps, and when lessons are over, we move over to the lagoon pool to have some fun.  My exercise regimen has fallen off a cliff since January, so it sure is invigorating to keep back into shape.  Now if my muscles would only feel as enthusiastic as my mind…

Jenn-Jen and I have been working hard on reconditioning Katelynn to not fight her feeds.  We agree that her behavior has been a learned response, probably from a number of poor feeds previously, so we are doing everything we can to show her that feeding is a good experience.  When she resists and cries, Jenn-Jen and I have decided to put Katelynn down to let her calm down, and this method seems to work.  Admittedly, Jenn-Jen does seem to have more success than I do, but I am learning to not be so worked up about making sure Katelynn takes in enough milk.  I am also reminding myself daily that the girls are gaining a healthy amount of weight, so if a signficant amount of the bottle remains, so be it.

Speaking of the girls’ weights, I am very encouraged to report that we went to our pediatrician’s office on Monday, July 7th, and are pleased with results.  Katelynn is now at 10 pounds 10 ounces and Daria measured in at 11 pounds 5 ounces.  Our doctor was thrilled to see how well Katelynn progressed despite the setback associated with her going into surgery for her shunt revision.  As he plotted Daria’s growth, he directed us to look at his computer screen to illustrate the fruits of our efforts.  We stared at a growth chart, similar to this one from the CDC: (http://www.cdc.gov/nchs/data/nhanes/growthcharts/set2clinical/cj41l068.pdf), and were blown away by what we saw.  When we tracked Daria’s progress, we learned that she now plots on the curve, albeit around the third percentile!  While this is roughly three standard deviations below the mean, the sharpness of both of the girls’ growth curves shows that they are well on their way towards catching up to what full-term babies should weigh at this point of their chronological age.

We have also received our pediatrician’s blessing to skip one of the night time feedings for Katelynn and Daria.  Due to the impressive weight gain mentioned above, the doctor felt that it would be fine to let the girls rest a little longer at night, which in an ideal world, should amount to a little more rest for us parents.  Jenn-Jen and I were ecstatic to be given this opportunity, but you have to understand that we can only get extra sleep if both of the twins decide they will skip the same meal.  The first two nights we tried this amounted to nothing much more than an uncoordinated headache of variable feedings, but it finally feels that the girls have adjusted as of last night.  I am trying to promote restful sleeping by making the environment as quiet and dim as possible after midnight, and was even successful in catching a nap myself when the girls were asleep. 

Today we had a chance to meet Shannon, the Program Manager from United Cerebral Palsy’s Respite services.  Listening to Shannon’s own experiences raising her twin nieces as a widow gave us a sense of admiration for this woman’s strength and dedication.   Our interview with Shannon provided many answers to the respite service granted to us by the Alta Regional Center and we are looking forward to meeting a care worker who came highly recommended.  As you can imagine, as much as Jenn-Jen and I value the extra help with Katleynn and Daria, we also want to make sure the respite worker is familiar and comfortable working with young infants with a history of prematurity.  Given Shannon’s personal history, we felt very comfortable in trusting her as being our advocate in finding the right resource.  At this point we have seventy two hours of respite care provided per calendar quarter, which amounts to twenty four hours of much-appreciated assistance each month.  This may not be a huge amount, but we are grateful for this blessing.

As I found a moment to go through some digital photos taken since the last time I posted them on the blog, I came to realize how long it has been since I have shared these captured moments in time I treasure so dearly.  I wish I could turn back time and set up a journal back when Adam was born, but as frazzled as life can sometimes feel nowadays, I was probably even more of a wreck back then as a brand new parent.  Nonetheless, I want to put up a few overdue pictures so you can see how the girls continue to grow, which is obviously better than how our carrots are faring… 

·     Daria’s development is truly showing!  She is tracking us really keenly with her eyes, gives us a smile periodically and made her first “ooooh” response to my sister, Janet.  It is unbelievable that this momentous occasion would happen with my sister, given the amount of time Jenn-Jen and I spend caring for the girls.  At least this happened on my birthday!  Thanks for the special gift, Daria! 

·     Katelynn is also improving in her development.  We are seeing more focus from her in terms of eye contact and she will offer a rare smile here and there.  Katelynn also tracks us a bit better now, so it is encouraging to see the overall improvements.  Feedings have improved in terms of volume, but not so much with her feisty acts of resistance.

·     Adam is officially resumed preschool for summer session until Kindergarten begins next month.  We have seen marked improvement with his behavior, as his boredom has waned with the excitement of learning new things in a fun and social environment.  As a bonus, this past week’s theme in preschool focused on dinosaurs, a recent favorite topic of discussion.

·     The smoke in the Sacramento valley finally came down and our air quality is improved last week.  I felt comfortable enough being outside that I mustered the energy to pull out a significant number of rogue, broad-leaf weeds from my front yard.  It was an invigorating and cleansing moment when I tossed out the last culprit into the green waste container.  Unfortunately, we are due for more foul air in the near future.

·     I gained another year on July 3rd and had my family over for a barbecue.  In all honesty, I was not expecting my birthday to be different than any other day I have had since the twins came home from the hospital.  I was happy and thankful to be able to share it with my loved ones, and really enjoyed the handmade card/letter Adam put together for me.

·     A family from our connection group at church was kind and generous enough to bless us with the service of a housecleaner.  We are extremely grateful for this blessing and a little embarrassed at the sad state of clutter and dust that has run rampant in our home.  At least I am now motivated to keep up the cleaning.

·     We heard back from our service coordinator at the Alta Regional Center and learned that we will be able to begin receiving respite care shortly through the program at United Cerebral Palsy (http://www.ucp.org/)!  I spoke with the Program Manager who will be coming out on Thursday, July 10th to begin with an intake interview.  It will be a relief to have more support given our around-the-clock care of the twins.

Unfortunately the road we have traveled during the past week has far from being stress free.  While many of the issues are minor, the cumulative effect of the challenges we face can create a less than pleasant mood around the house.  Let me elaborate:

·     Parenting very premature twins remains as daunting as ever, as Jenn-Jen and I often feel we are trying to make our way through treacherous, uncharted waters.  We find ourselves often in doubt if we are doing the best for the twins, and a good example is if it is better to follow the three hour feeding schedule to promote their “catch-up” weight gain, or let them get the sleep they seem to need so much.  Complicating the matter are the periodic occurrences of unsolicited advice, which I will call “drive-by parenting,” offered up by well meaning strangers, acquaintances, and even our dearest loved ones.  Please do not misunderstand my frustration as hypersensitivity, as I have always been, and continue to be grateful and appreciative of all of the support received thus far. Honestly, I question if Jenn-Jen and I would have remained sane without assistance.  Still, it almost goes without saying that in our worst moments when we are feeling emotionally spent, we get sniped by suggestions that often begin with phrases like “so-and-so’s baby is doing just fine, so maybe you should try doing this…” or “maybe you are pushing the twins too hard and need to lighten up…” or “how come you aren’t trying harder to get the girls to nurse?”  Unfortunately, comments like this made even in the sincerest spirit of good intentions pierce our increasingly fragile emotional state like judgmental bullets, and their unintended effect makes us feel our ability to properly parent Katelynn and Daria is in serious doubt.  I know that some of you may wonder if we are being too defensive, but I can say in earnest that I receive no edification when our parenting skills and the development my girls are compared with others and their children.  My argument is simple:  unless the baby in comparison was born as a multiple with similar issues relating to extreme prematurity and the various medical conditions faced by my Katelynn and Daria, there is no right to assume what works well with that baby is the end-all solution for my girls.  I apologize if I am coming across harsh, but there have been many times when I want to throw up my hands, hand over the twins and say “if you feel that you know it all, please go ahead and show me your way works.”  Therein the aggravation lies, as that is not an option.  In the meantime, as tired as Jenn-Jen and I are feeling, we will continue to work on toughening ourselves while we are giving our all to provide the best for our babies.

·     It saddens me to report that we caught Adam lying to us.  I am not so naive as to believe this day would never come, but it is an inevitable and disappointing milestone I had hoped to forgo as long as possible.  Jenn-Jen and I have taken proactive measures to explain to Adam how lying is wrong and hurtful, while doing so with the reassurance that our love remains steadfast even if he makes the wrong choice.  As parents, we feel it is vital to provide our children with the understanding that there will be repercussions for making poor choices, but telling the truth will always yield better results than lying.

·     Our lack of sleep is still a cause of concern.  I am increasingly finding myself sleeping as the sun is beginning to rise, only to get up in a few hours to begin work.  Sometimes I am surprised my mental faculties remain as intact as they are.  Jenn-Jen is also sleep-deprived, and coupling this with her elevated stress level, she often speaks of feeling exhausted even right after waking up.  I confess our exhaustion may be a major contributor to the first problem mentioned above.

There is still so much more on my mind to share, but Jenn-Jen is awake to relieve me and the bed desperately calls.  I thank you for rejoicing with us for all the good that God has provided and I thank you for your compassion, understanding and prayers for all the challenges we face.  If you would specifically pray for us to keep our attitudes in check, that would be appreciated.  The last thing I want to do is to ostracize those that want to help by being snappy or mean-spirited.  Please forgive us if you have been the undeserving recipient of our frustration.

Things here in the Owyang home remain about the same.  We are still tired and sleep-deprived, but our spirits remain intact.  I want to thank you for your dedication in continuing on with us, and please accept my apologies if it is taking a little longer for me to respond to your e-mails, messages and packages.  Speaking of packages, Jenn-Jen and I owe an overdue word of thanks to our dear friends, Sue and Peter, for their thoughtful care package.  The unfortunate reality of our moment-by-moment lives is that we are still struggling to find time to tend to many of the basics, and regrettably, I am saddened to say that we are not as quick as we used to be in acknowledging all of your acts of kindness and generosity.  A good illustration of this is the fact that I woke up Sunday morning around 7:00 AM and finally found a spare moment to brush my teeth and wash up at 12:30, nearly five and a half hours later.  In case you are wondering, I promise I will not get offended if you tell me that I need a shower or breath mint…

As pressed as we are for more time and rest, I am encouraged to say that we are qualified to receive respite care.  Our meeting with the service coordinator from the Alta Regional Center was time well spent on Thursday, as the interview process brought out the details surrounding the challenges of raising very premature twins.  One of the services we have been granted is having a care worker come to our home to provide respite, or relief, assistance as we see the need.  Of course, there is a limit as to the amount of time that is available per calendar quarter, but we welcome this resource with open arms.  Having my parents and an occasional visit from friends has always been a very short-term solution for us, and we feel we have taken so much from so many.  Since the respite care is a state-sponsored program, Jenn-Jen and I feel that we can be less of a burden on our loved ones.  It will still be a few weeks before the respite care begins, but we are encouraged to know help is on the way.

Katelynn and Daria’s feedings remain challenging, but we feel we are learning to adapt to their individuality every day.  After numerous trial and error attempts, it appears that Katelynn favors a smaller, slower flow nipple.  While this is not exactly what we had hoped for, it gives us a sense of peace in learning what works best for a peaceful feeding.  The smaller nipples, unfortunately, do not mimic the breast well, so a part of us feels we are taking a step back towards the ultimate goal of getting Katelynn to nurse.  Additionally, the slower flow means a longer feed and time pressure to make sure our baby is getting enough.

Daria’s feedings have taken a negative turn as of late.  For some unknown reason, Daria is often drowsy and this equates to her taking in less milk.  We are finding ourselves trying all sorts of stimulation, from tickling to a cool washcloth to her face, to get Daria to wake up.  Perhaps this is a temporary phase, but it often feels like we are tossing out a third or more of the milk in the bottle each time. 

Another weekend has come and gone.  As much as each day is beginning to meld into another, Saturday and Sundays offer me some freedom from thinking about my responsibilities at work.  As a full-time telecommuter, I have spent the last few years honing my skills in the art of work/life balance, but I confess it has been much more challenging with the schedule I now keep.  For the past two weeks, I have been feeling my guilt return each time I see Adam acting bored or asking what he should be doing.  I even feel that same sense of being a substandard father when I realize my five year old son has spent the last ninety minutes in his room reading alone.  I cannot tell you how relieved I am to know that Adam’s summer session will begin this week.  Additionally, he will have some swimming lessons coming up as well to keep him occupied in a healthy manner.  I suppose all of us will have respite from the challenges of our daily lives soon.  Thank God.

As I speak about the wildfires here in California, I think quite often about how our lives seemed to have been in this fire-fighting mode lately.  Since Katelynn’s surgery and discharge over the weekend, we have been watching her very closely to see if the marked improvement is here to stay.  Her fontanelle has softened and sunken back down to a normal level, and her head definitely looks less swollen.  In terms of her behavioral change, all was looking well at the beginning, but we are now seeing her fight her feedings again.  This probably has nothing to do with the occlusion of her ventricular shunt system, but it is nonetheless a bit frustrating to see Katelynn adamantly resist the bottle during a majority of her feeds.  So we are back to sleuthing for a solution on how to make this time less stressful and more enjoyable for all of us.  We did notice Katelynn having quite a bit of trouble gagging on the Avent nipples before her shunt issues, and saw some relief when we switched to the shorter nipples supplied by the hospital.  As an effort to make things more peaceful, we decided to move back to these hospital nipples on a Gerber bottle, despite our recent success with the Avent system.  We have seen mixed results, and as of tonight, Katelynn is still showing much resistance.  The situation is challenging to say the least…

Tuesday, June 24th and today have been tiring, and much of it is related to the fact that Adam is now on his second week off since his preschool session ended.  Jenn-Jen and I feel that Adam is either bored or is beginning to feel the reality of not being able to grab our attention at his whim.  Either way and even with my parents around to help out, the stress level has been elevated because we are undergoing a painful period of adaptation for Adam.  We are trying our best not to let his frequent questions regarding what he should be doing now wear on us, but I confess, it is beginning to feel as if he is whining and sometimes incapable of using his resources and imagination to keep occupied.  Just as I am about to lose my patience with my son, he will sometimes surprise me and gather some books to read on the sofa.  During my times off work or during lunch, we have been working on his interest in learning fractions.  So we find ourselves drawing circles into imaginary pieces of pie or cutting out similar circles out of paper to illustrate the wonders of halves, thirds and quarters.  Sometimes I still find it hard to believe Adam is five and has not started kindergarten yet.  I just hope Jenn-Jen and I can keep him challenged despite being so busy with Katelynn and Daria.

Today we were fortunate enough to have Cheryl, a friend from church, come by to help out during the day while my mother was out running errands.  I have come to concede that, at this stage of need from our children, having just Jenn-Jen or myself tend to all three of our children is all but an impossible mission.  While I completely appreciate the help my parents have provided by sacrificing their time to be with us, they have their needs, responsibilities and lives to lead too.  As much as I was afraid to let my mother run off during the afternoon, I knew that it would be selfish of me to expect her to be constantly on duty.  I suppose it is the same lesson I am trying to impart on Adam, which is to learn the difficult lesson of doing the best you can when there may not be much to work with.  Still, we owe Cheryl our gratitude for her servant’s heart in asking us if she could come over to provide some relief.

I am looking forward to an in-home appointment scheduled for tomorrow (Thursday) morning with a representative from the Alta California Regional Center (http://www.altaregional.org/).  This non-profit organization is contracted by the State of California to offer resources and support for individuals with developmental disabilities, children at risk and their families.  I had a brief discussion with the mother of Katelynn’s roommate at the hospital on Saturday regarding some of the services she has received and am eager to learn more for the sake of Katelynn and Daria.  While it feels exceedingly difficult to manage more appointments, I am encouraged to know many of the services provided through Alta will be house calls.  Jenn-Jen and I grow more and more concerned about our girls’ development, and especially with Katelynn, as the effects of her grade 4 intraventricular hemorrhage (IVH) will slowly begin to manifest.  Our hope and prayer is that we can do everything possible to help intervene and provide enough therapy to help offset any potential disability.

Well, it is 3:15 AM and once again, time to begin the next round of feedings.  Jenn-Jen is up and expressing her milk, so I will start off Daria’s feed.  Then I will try to add about three hours of sleep to the two hour nap I took in the early evening last night.  One day I may just keep an hourly log of my activities and put together a nifty pie chart of where all my time goes.  Now, if I only had the luxury of devoting time to do that!  Goodnight dear friends and family from the quiet comfort of my sofa. 

The head echo, or ultrasound, went as smoothly as it could have, given the fact Jenn-Jen needed to pump and Daria was up for her feeding.  Thankfully, we were at the hospital and the lactation room was readily accessible.  Somehow we were able to manage all three of our tasks with just enough time to make it over for the girls’ eye examinations.  It really could not have worked out better that the ophthalmologist’s office was only a mile away.

After a long wait, the ophthalmologist’s staff came by to administer some pupil dilating drops in Katelynn and Daria’s eyes.  This would be repeated two more times at ten minute intervals to allow the pupils to open up completely so the doctor can see through their eyes to view their retinas.  All the while, we were wondering if the results of the ultrasound were on their way to our neurosurgeon.  We were finally moved out of the waiting area into a room and the doctor came in to assess the twins.  I asked Jenn-Jen to turn away as I held each of the girls separately during the very uncomfortable eye examination.  Fortunately, the ophthalmologist was quick and the news was good!  Katleynn’s ROP has completely regressed, so she will no longer need to see the retinal specialist.  Daria’s condition has also stabilized, but another examination will be required in three week’s time.  The doctor was hopeful and said that he feels there is a ninety-five percent chance that Daria’s ROP will clear by the next visit. 

With the excellent results, we dashed off to the neurologist’s office, which happened to be about another mile away.  Through the crazy agenda we had, there was no time for us to stop for lunch, let alone feed the girls on schedule.  Our hunger would have to wait, as we really wanted to know if there would be any further instructions regarding Katelynn’s deteriorating condition.

As it always seems to be the case in these types of situations, the neurologist was running behind with his appointments, but not quite behind enough for us to do anything else except wait to be called in.  During this time, a number of people found it fascinating to see twins and tried to make their way over to Katelynn and Daria.  It really was not so bad until two young children broke loose from their parents and insisted on getting a closer glimpse of the girls.  I had to intervene, ask them to stay back and explain that the twins were not feeling well.  As much as I hate being an over-protective parent, the fact of the matter is that our Katleynn and Daria are still preemies and highly susceptible to anything even remotely contagious. 

After a significant wait, we were called into one of the examination rooms at the neurologist’s office.  This would be the first of many post-discharge visits with this specialist, as he would help assess and explain the potential developmental complications that may be in store, primarily for Katelynn.  Dr. Chez stepped in and we immediately found the man to be very amiable.  He appeared to be very down to earth and friendly, but what impressed us most was his concern and sense of patient advocacy.  The doctor could tell Katelynn was experiencing a shunt malfunction, but wanted the neurosurgeon’s assistant to come down to confirm.  We were fortunate that the neurologist and neurosurgeon’s offices were only separated by three floors in the same building, so it was not long before the assistant was called to come in.

It did not take long for everyone in the room to come to the same conclusion that Katelynnwas having trouble with her ventricular shunt.  A call was made to our pediatric neurosurgeon and the assistant tapped the shunt to find out where the occlusion, or blockage, was located.  After a few needle sticks, it appeared that there was blockage somewhere between the brain ventricles and the shunt itself.  The neurosurgeon replied on the phone that he had reviewed the ultrasound results and wanted to get Katleynn into surgery on Monday morning to resolve the issue. 

Monday just seemed so far away, given how quickly Katelynn’s condition worsened since the neurosurgeon saw her only three days ago.  We must have looked dejected and stressed, because the assistant quickly left to see if she could get an operation scheduled sooner.  Our pediatric neurosurgeon was already off work, but one of his partners was on-callat the hospital.  Instead of waiting until Monday, Katelynn would go into surgery in a few hours and stay, at a minimum, overnight at the hospital. 

Jenn-Jen and I deliberated on our next course of action and agreed that it would be best that I stay with Katelynn overnight.  The four of us drove over the the hospital and checked Katelynn in right away.  Surgery had been informed and already prepared for our arrival, so the transition process from the admission desk over to the operating room holding area went very smoothly.  Before long, we met with the anesthesiologist and neurosurgeon to go over the procedure.  They would access the area near where Katelynn’s shunt is currently placed to determine where the problem was located.  If the occlusion resides in the cathether that draws cerebrospinal fluid (CSF) from the ventricles to the the shunt valve, it would be fairly easy to replace the catheter tubing.  In the meantime, they would also also take a sample of Katelynn’s CSF to see if there was any infection.  As a precaution of the possibility of complications, the Monday morning neurosurgery appointment would remain on the schedule for a follow-up procedure as necessary.

During the hour-long operation, Jenn-Jen, Daria and I went over to the hospital cafeteria to pick up dinner.  With the hectic schedule we have had, we missed lunch altogether and our stomachs were beginning to remind us that we were hungry.  Once again, it was also time for Jenn-Jen to express her milk, so Daria and I returned to the surgery waiting area.  We were grateful for a very compassionate nurse that put us up in a separate room to wait for Katelynn, effectively removing us from the crowded general waiting area.  Before long, the neurosurgeon came by to inform us that Katelynn did very well through the surgery and would be in the recovery area for an hour or so.  As they suspected, the occlusion was a small blood clot that lodged itself in the proximal cathether between our daughter’s ventricles and the shunt.  Katelynn would spend the night upstairs on the sixth floor in the pediatric intensive care unit (PICU) before her scheduled computerized axial tomography (http://www.mayoclinic.com/health/ct-scan/FL00065), or CAT scan in the morning.

After an hour or so, we escorted Katelynn upstairs into a room she would share with another baby girl undergoing care.  Our daughter already appeared more alert as she had regained consciousness and I could see that her head was visibly less swollen.  Katelynn was doing well enough post-surgery that we were able to feed her sixty milliliters of milk, roughly half of a normal feeding.  Once she finished, I drove Jenn-Jen and Daria back home, where my father was waiting and would spend the night helping out. 

I looked at the clock and realized it was past 11:00 PM.  Although I had been up over twenty four hours straight, I was doing better physically and mentally than I would have expected out of myself.  Armed with a large travel mug of home-brewed coffee, I drove back to the hospital through the detour caused by the massive freeway reconstruction in the middle of downtown Sacramento on Interstate 5 and made it in time to give Katelynn her next feed.  We would increase the volume to ninety milliliters to help Katlelynn transition back to the one hundred and twenty she normally takes in every three hours.  Our little fighter gulped down the ninety in a heartbeat, and I felt satisfied in knowing we have our Katelynn back.

It was now approaching 1:00 AM early Saturday morning and I had not slept since I woke up on Thursday around 10:30 PM.  I informed Katelynn’s nurse that I would probably pass out before the next feeding in three hours, so she gladly volunteered to feed Katelynn.  I am not sure if I have ever stayed up for twenty seven hours without sleep, but seeing Katelynn sleeping soundly in peace allowed my mind and body to finally rest.  Sleeping in fold-down reclining chair would normally be a backache just waiting to happen, but I was beginning to feel so tired, you could have set me in a bathtub for the night.  Jim, the father of Katelynn’s roomate would be staying overnight as well, keeping his daughter company as I would with mine.

I awoke at 7:00 AM to the sounds of nurses talking to one another.  Surprisingly, I slept very well and felt quite refreshed.  Jim had left already and I ventured out towards the bathroom with my toothbrush and contact lenses in hand.  It was a wonderful surprise to see Gina, one of the nurses who had taken care of our twins in the NICU downstairs.  Gina informed me that she was “floating” up here in the PICU and would be taking care of Katelynn for the day.  It was such a comfort to see a familiar face and I felt that we were off to a great start. 

An hour later, we received a call that the CT scan was ready for Katelynn.  Gina rounded up a wagon, and converted it into a nicely padded bassinet on wheels for Katelynn’stransport.  I would pull my daughter while Gina trailed behind with the IV pole.  Through an elevator ride six floors down and a trek down two long hallways, we made it to our destination.  I had never seen a CT scan machine in real life, and it looked quite huge as we placed my tiny baby onto the platform where she would lay for the scan.  After donning a lead apron and placing a small lead blanket over Kately, the GE Lightspeed (http://www.gehealthcare.com/usen/ct/products/lsproducts.html) CT Scanner came to life to take a series of high clarity images of Katelynn’sbrain anatomy.  The challenge with scanning babies is to keep them still during the process, and with a little help of a pacifier, Katelynn stayed cool and calm.  I was glad to see how quickly the scan was performed, and within a few minutes, we were packed up and headed back up to the sixth floor.

Another feeding was coming up in ninety minutes, and I wanted to move Katelynn up to her full one hundred twenty milliliters.  The problem was that there would not be enough breast milk for the next feed if Katelynn were not to be discharged until the late afternoon.  I made the decision to drive home to pick up a few bottles of milk while we were waiting for word from the neurosurgeon.  As I came back to the hospital, I learned that the doctor had actually called Jenn-Jen and informed her that Katelynn was looking very well enough that we could take her home soon.  Had I waited thirty minutes longer, the re-stocking trip home may not have been necessary.

Katelynn took the full feed without any issues and I went over the discharge notes with the nurse.  We would be able to remove the Tegaderm dressing on her scalp the next day and apply Neosporin twice daily.  For residual pain, the doctor prescribed Tylenol with Codeine, but this would be given only as needed.  I packed up our belongings and Gina escorted us downstairs for our drive home.   Bidding farewell to our familiar friend, I promised we would come back to visit and pray that it would not be under similar circumstances.

The house was filled with joy and relief as I walked through the door with Katelynn in her infant car seat.  Since then, she has been doing very well in all aspects, from her feedings to her alertness.  It definitely is great to have her back!

While we have consulted with our pediatrician and pediatric neurosurgeon earlier this week, we remain convinced that Katelynn needs to be re-assessed as soon as possible.  We will be calling the neurosurgeon in the morning to press for an appointment to have a head ultrasound performed so that we determine if there is a need for Katelynn’s shunt to be revised.  Additionally, we started keeping a record of our daughter’s head circumference to measure any rapid growth, which is additional evidence of pressure building up within her brain ventricles.

In this document (http://www.hydroassoc.org/docs/FactSheet_Shunt_Systems.pdf) from the Hydrocephalus Association, it cites a study that finds a shunt typically has a life of 5.5 years.  While that appears to be good news, there is also evidence that approximately forty percent of infants one year or younger require a shunt revision during the first year after implementation.  Additionally, multiple revisions are often required during the childhood years for infants undergoing treatment for hydrocephalus.  This information is very disconcerting and we are preparing ourselves for the potential re-hospitalization for Katelynn, should our suspicions of shunt malfunction be correct.

In addition to our worries, today’s agenda will be very hectic.  Katleynn and Daria are scheduled to see the ophthalmologist to have their retinopathy of prematurity (ROP) checked, and later in the afternoon, Katelynn is due to see the neurologist for her post-discharge appointment.  Considering the potential of shunt malfunction, I am leaning towards rescheduling Katleynn’s eye examination so we can focus on our immediate concerns.  Hopefully we can have Katelynn re-evaluated today.  It pains us to see her in this condition and we will not simply stand by idle while our daughter is suffering.  I will provide an update as soon as we know more.  In the meantime, we appreciate your continued prayers for healing.

In my previous post, I wanted to make sure I provided a thorough update of the developments surrounding each of my family members:

Jenn-Jen is still extremely tired, especially now that I am back at work.  On top of the rigors of the feeding and pumping schedule that keeps her constantly in motion, our recent concerns over Katleynn (more coming up) have been adding a high level of emotional and mental stress.  Today, Jenn-Jen came to me and said that she wanted to burst out in tears, but sadly enough, felt there simply was not enough time to waste crying.  She is trying really hard to allow herself to rest when she is able and to be as relaxed as possible when she is with the girls.

Adam finished up preschool last Thursday and will be off until the summer session begins on July 1st.  He had a wonderful time at Disneyland this past Sunday and has grown even fonder of amusement park rides and anything Disney.  It was tough not to be able to spend Father’s Day with my son, but I am glad he had the opportunity to enjoy the fruits of childhood.  We are now trying our best to keep him from being bored during the next couple of weeks by getting him involved in various activities at home.  With Jenn-Jen’s help today, he made a mean batch of Rice Crispy treats with a hint of his favorite flavor, vanilla.

Katelynn has been causing us a lot of worry recently.  She has been upset, not only during feeding time, but also the precious moments in between, when it is so vital for her to get adequate rest.  Jenn-Jen and my father were able to bring Katelynn in to see our pediatrician on Monday, and he felt that her crankiness may be due to acid reflux, as well as a case of thrush (http://www.medicinenet.com/thrush/article.htm).  Thrush is actually an oral yeast infection, which is a fairly common ailment among babies.  Untreated, it can cause discomfort during feeds and progress to a fever.  So, in addition to prescribing Ranitidine (Zantac) for the acid, Dr. Nealon also wanted Katelynn to start taking the liquid form of Nystatin (http://www.mayoclinic.com/health/drug-information/DR601025) to help fight off the infection.  

Additionally, Katelynn’s fontanelle on the top of her head had been feeling fuller and more protruded than usual.  This is a major cause of concern for us, because it signals that her cerebrospinal fluid may not be properly draining through her shunt to relieve pressure building up in her brain ventricles.  Normally in  case of shunt malfunction, there are other outward symptoms such as vomiting, inconsolable crying, and lethargy.  Katleynn does seem so much more tired and has been upset much more often, but we have not seen any vomiting.  Nonetheless, we brought her in to see her pediatric neurosurgeon on Tuesday just to have some peace of mind.  The doctor’s assistant felt that there really was nothing to be concerned about and the doctor himself came in towards the end of our appointment to assess Katelynn.  He also agreed that it is much too early to be concerned about a malfunction, but wanted us to bring her back in for an appointment about three or four weeks out.

Today, Jenn-Jen brought Katelynn back to see our pediatrician to see if he had any other thoughts regarding Katelynn’s frequent battles against the bottle.  To our surprise, the thrush seems to have subsided, and this is very good news.  Admittedly, Katelynn does seem to be less upset, but on the flip side, she does not have many calm, awake moments in between her feedings.  Despite our concerns, our doctor wanted to reassure us that he did not see any medical issues and wanted us to try to be more relaxed, as Katelynn can draw from our moods.  As wonderful as this sounds, it is so difficult when you have spent the first half of the feeding period trying to patiently get your baby to take the nipple.  Alas, we must continue and hope this will pass soon.

Daria, thankfully, has been a very good feeder.  She has actually been a very easy going baby, much like Adam was when he was her age.  Perhaps God knew our limits and wanted to make sure we did not go insane by giving us two challenging twins.  All joking aside, as much as I am thankful for the ease we have with Daria, I love both of the girls equally through it all.  Daria does still have some reflux issues, but the spit up appears to be less in volume, force and frequency than before.  This may be in part due to the acid reflux blocking effects of Ranitidine (Zantac).  Daria did also have a bad case of thrush, but we believe the Nystatin is doing its job to quell the infection.

It is now a few minutes shy of 4:00 AM and the girls finally are both quietly sleeping.  As I wait for Jenn-Jen to come downstairs to take over, I am also glad to know that my mother, who is sleeping in our guest room, will be joining her shortly.  I continue to pray for improvements in Katelynn and Daria’s development, Adam’s patience and understanding of this strange lifestyle we now lead, and fruitful rest when it is available for Jenn-Jen and me.  I look forward to that day when my wife and I can reflect upon how tired we were back when we brought the twins home and laugh to ourselves that it only made us stronger. 

It has become clearer and clearer that my soured demeanor and decreasing level of patience is driving a wedge into many of my relationships.  The signs can be subtle, creeping up through me in the form of an unwelcomed and sarcastic remark.  Other times, my moodiness has manifested itself in the form of being short with loved ones, especially those who mean well.  Whatever it may be, none of you deserve to be on the receiving end of my irritability and I humbly ask you for your forgiveness.  Those of you that know me well enough probably can attest to my fairly even-keeled nature, so if I have come across short and ill-tempered, please understand this is far from what I would consider normal for myself.

To combat the demons of negative thoughts, impatience and frustration, I really had to take some time to myself to reset emotionally and spiritually.  Unfortunately, time is still such a scarce resource these days, so tonight, I looked for pockets of opportunity between Katelynn and Daria’s feedings to pray and find God’s guidance and comfort through His word.  I asked myself what goal am I trying to accomplish and deep within, the answer was fairly simple.  I want to renew myself and surrender my fears, doubts and frustrations to my Lord.  I want to live a life doing what is right and now worrying about how I am wronged by others.  I want to stop turning inward for answers and open up my heart to the gentle leading of my savior.  I have spent far too long accepting the fact that my spiritual life has taken a back seat to the grind of the challenges faced with my day to day responsibilities.  No longer will I allow my spiritual self to suffer from such atrophy, just as I should not allow my physical body to fall into disarray.

To help me take the first steps in regaining my foothold towards spiritual regrowth, I turned to the Bible and found these verses in Proverbs.  They speak of purpose, love, faith, and leading a blameless life; all of which are critically important as I aim to draw closer to God.  I particularly find hope in the words that children are blessed by having a parent(s) who strives to lead a blameless life.  By now, you should understand how much my family means to me, and I often wish I could only give them more.  I suppose the best way to do this is simply by following the instructions set forth through His word and living them day by day.  In addition to the scriptures, I wanted to include a quote supplied to me by an old high school friend whom I recently reunited with through Facebook.  It has provided me comfort in my times of loneliness and reassures me I never journey alone.  Thank you, Nicole.

The purposes of a man’s heart are deep waters, but a man of understanding draws them out.
Many a man claims to have unfailing love, but a faithful man who can find?
The righteous man leads a blameless life; blessed are his children after him.

Proverbs 20:5-7 New International Version

Each of us may be sure that if God sends us on stony paths He will provide us with strong shoes,
and He will not send us out on any journey for which He does not equip as well.

- Alexander Maclaren

Now that I have spent an inordinate amount of time keeping you abreast of my personal progress, I want to take an opportunity to write about the latest developments with the rest of my family.  Please read my next blog entry for an update.

On Friday afternoon, we had a public health nurse from the County of Sacramento come out and perform an assessment on Katelynn and Daria.  This service is provided to all families of premature babies born in the county, and we went through the same experience five years ago when Adam was born.  The nurse provided us with a plethora of resources and offered her assistance as a second set of “eyes and ears” should we wish for her to accompany us to the girls’ doctor visits.  We did get an updated measurement of Katelynn and Daria’s weights and lengths, which were:  8 pounds 13 ounces and 20.5 inches, and 9 pounds 5 ounces and 20 inches, respectively.  This steady increase in weight is, once again, reassuring proof that we are headed in the right direction.

Despite the apparent good news, Katelynn’s progress towards calmer feedings has seriously backpedaled and it seems as though we are torturing her with the bottle every three hours.  Jenn-Jen and I agreed to reach out to our pediatrician and a resource that may send out a speech pathologist to help assess our struggles.  For a number of days, Katelynn was doing very well with the coordination of sucking, breathing and swallowing.  With each feed now, our poor daughter gags and gasps for air more often despite all of our efforts to help her pace.  We have even changed out the nipple to one with a slower flow, but this has resulted in a diminished intake.  Hopefully we will be able to get a professional opinion and guidance on what needs to be done to make the feedings productive and less stressful for all of us.

Daria is doing very well with her feeds, but still has problems with spitting up.  Jenn-Jen and I joke about a certain spot on our kitchen floor being the cleanest part of our house, since it gets disinfected several times a day afer Daria uses it for target practice.  Nonetheless, the feeding process is still much more calm and peaceful compared to that of her sister’s.  The recent use of Ranitidine, or Zantac, seems to have calmed down Daria’s discomfort by blocking acid reflux.  We are grateful that she is resting more comfortably and hope we will not have to keep using the medication over the longer term.

As for the rest of the weekend, we spent virtually all of our waking hours tending to the twins in our family room.  Somewhere during and in between the feedings, I was able to watch the U.S. Open golf tournament, which made me miss San Diego terribly.  Just seeing the coast line of La Jolla on my television brought back old memories of those carefree days Jenn-Jen and I spent together during our college years.  We probably put too much time into watching the ocean waves instead of studying, and life just seemed so simple compared to today.

As it is now 2:20 AM on Monday morning, I am sitting here next to Daria, who is sleeping very soundly, and Katelynn, who is doing just about everything else.  Katelynn just finished a feeding, which went very poorly, and I keep praying the next one will be better.  In an hour or two, Jenn-Jen will wake up to relieve me so I can catch a few hours of sleep.  Thankfully, my father is staying overnight, so he will be able to provide Jenn-Jen support while I tend to my work.  I am anticipating an overflowing e-mail inbox and a full day’s worth of catch-up work.  Adam will return in the late afternoon and life will become even a bit more hectic since he is done with pre-school until his summer session starts at the beginning of July.  I want to thank all of you who have offered or continue to offer your help to our family.  As much as I feel that we have worn out our welcome and taken so much of your time and resources, I appreciate your willingness to stick with us through our challenges.  I know things will get easier over time, but right now, that seems so distant…

Parents are often so busy with the physical rearing of children that they miss the glory of parenthood, just as the grandeur of the trees is lost when raking leaves. 

- Marcelene Cox

The care of Katelynn and Daria spans around the clock, and to tell you Jenn-Jen and I are exhausted and overwhelmed would be stating the obvious.  Unfortunately, Marlene Cox has it correct that we are “often so busy with the physical rearing of children,” and sadly are “missing the glory of parenthood.”  Through the many difficult times we have faced, often during the nights that never seem to end, my wife and I have asked ourselves how we could have been so foolish to think we would be able to handle this addition to our family without losing our sanity. 

Then something always happens… Reinforcements arrive, the sun rises, and the loneliness slowly fades away as quickly as it came hours ago.  Katelynn and Daria begin to show us they truly are the wondrous miracles we had prayed for so much during the past few years of failed attempts at pregnancy.  Sometimes it is a well-timed smile from Katelynn, or the way that Daria tries to fight off a sneeze coming on.  Sometimes it is the sight of Jenn-Jen and Daria looking into each other’s eyes in a sweet moment of bonding during a feed, or the warmth of Katelynn snuggled up to my chest as we are both fading off into unconsciousness on the sofa.  Every time I see my girls resting peacefully, I remind myself one day they will grow up, just like their big brother.  Deep inside I know this period of sleeplessness and physical exhaustion will pass, but I confess it is often difficult to keep that perspective.

Daria continues to battle her reflux, but we seem to be making strides towards the goal of fewer occurrences of projectile spit up during her feeds.  Whereas we were consistently experiencing forceful vomiting every other feeding, or approximately every six hours, they have since decreased to two or three episodes per day.  As you may have been aware, we had been very concerned about the spitting up and decided to bring Daria into see our pediatrician on Tuesday.  After a thorough examination, Dr. Nealon concluded that we should not be worried about Pyloric stenosis (http://parenting.ivillage.com/baby/bhealth/0,,3q4d,00.html), a condition where the pylorus muscle in the stomach is enlarged to the point where food is blocked from passing into the intestines.  To help with the continuing discomfort of acid reflux, we received a prescription for Ranitidine (http://www.medicinenet.com/ranitidine/article.htm) syrup, better known as Zantac.  As the effects of the drug build up over time, we hope to see some results to allow Daria to rest more comfortably between feeds.

In terms of our attempts to bulk up Katelynn and Daria, I am encouraged to inform you that they are both well on their way towards increasing their weights to catch up with what is expected of a full-term newborn.  During our appointment with the pediatrician, we learned that Katelynn is now at 8 pounds 8 ounces and Daria is 9 pounds 0.5 ounces.  This is promising news, especially when we see their growth plotted against a normal growth curve.  In fact, looking at the progress gives us the reassurance we need whenever we are in doubt that the stressful and frequent feedings are actually making a difference.  Dr. Nealon encouraged us that the evidence of weight increase more than compensates for the issues of reflux and difficult feeds, and asked us to reset our thinking and consider our issues as laundry problems instead.  We left the office feeling a peace of mind that we are on the right track and reminded ourselves that the inconveniences will pass.

Thank you all for your continued prayers despite my less frequent postings.  As this week is coming to an end, I continue to be concerned about the transition back to work next week.  Please keep the prayers, encouragement and e-mails coming.  We appreciate hearing from you, if only to have an ocassional sanity check or know we are not struggling alone.  I actually do read through each e-mail you send and every comment you post on the blog, but as you can imagine, I am woefully behind in my response time.  Thank you once again and I look forward to providing you with continued updates.

Jenn-Jen and I went through probably our roughest night on Tuesday, June 3rd, after bringing the girls in for their pediatric appointment.  Both Katelynn and Daria received their four-month immunizations, which for the life of me, I do not currently have the names of the medications.  Nonetheless, the pain from the three shots in their thighs extended into the afternoon and night, prompting both Jenn-Jen and I to forgo our sleep to make sure the girls were getting as much rest as possible between feeds.

The main source of our stress and frustration nowadays occurs during the feedings we give every three hours.  As mentioned in my previous post, we are unable to simultaneously feed Katelynn and Daria, and this amounts to an extraordinary amount of time dedicated to making sure enough milk is taken each interval.  This really would not be such an issue if the girls were more eager to take to the bottle or breast, but this is far from reality. 

Katelynn struggles in almost every feed and the only way to quell her is to make sure she is burped.  I would say we spend roughly half the amount of the feeding time getting that gas out of her system, so it feels as if every minute counts.  When we do get Katelynn to latch onto the nipple, she does reward us with a relatively good effort with taking in the milk. 

Daria is an entirely different and more difficult case.  She tends to feed slower and is much more gas-filled compared to her sister.  With Daria, we need to be very proactive in burping her, and even then, she has a very bad case of reflux.  Initially, we found wet burps to be common, but they have since progressed to forceful acts of vomiting that seem to be occurring consistently during every other feed.  We have tried to keep her upright and be gentle in moving her into a burping position, but it seems that this is not enough.  Even with the use of simethicone to reduce Daria’s gas, we are feeling more and more frustrated that we need to feed her away from anywhere upholstered or carpeted.  The spitting up generates an increased level of laundry as well, as burp cloths and clothing (Daria and ours) end up bearing the brunt of the projectile burps.

Even with all of our concerns regarding gas and reflux, our pediatrician is advising us to keep the course.  I suppose there is not much to be concerned with, since the twins are now steadily gaining weight.  On Tuesday, June 3rd, Katelynn weighed in at 7 pounds 13.5 ounces and Daria is a hefty 8 pounds 3 ounces.  The “light at the end of the tunnel” came as the doctor explained that we may aim to slowly transition to a four hour feeding frequency beginning in two weeks. 

With another week beginning shortly, I am praying for us to progress into a more restful pattern with the twins.  As I am off work for one more week, I am grateful to have the time to dedicate to caring for my family, but am also burdened with the thought of the trials to come upon my return to work.  Since Katelynn and Daria’s homecoming, I know the Lord has been developing within me a new level of patience and perseverance.  Through all of the stress, I do feel Him stretching me and am consciously aware that I have become more adaptable to the nonstop changes.  Still, I ask for your prayers for my entire family, as the task of raising very premature twins has been exponentially more challenging than I would have ever imagined.  I am always striving to be the best that I can be for my family, and it can be frustrating and overwhelming when things go awry, especially during the lonely nights. 

In closing this early morning, I want to share some fairly recent pictures and a scripture from Psalm 4 that reminds me of the rest that God provides:

I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety. 

Psalm 4:8 New International Version

Katelynn & Daria snoozing at home ( 05.17.08 )

Daria with our pediatrician, Dr. Nealon ( 05.20.08 )

Katelynn with our pediatrician, Dr. Nealon ( 05.20.08 )

Adam spending some quality time with Katelynn ( 05.24.08 )

The family with our dear friends, Mike and Angie ( 05.24.08 )

1. Jenn-Jen and I still have not simultaneously slept in the same bed since May 17th.  Wait, I take that back.  We may have taken a short thirty minute afternoon nap together two weeks ago…
2. Now that gasoline is running approximately $4.30 a gallon locally here in Sacramento, I am pleased to say our family has probably driven no more than an average of five miles a day since Katelynn and Daria came home.  This even takes into account the girls’ three doctor’s visits since their discharge.  Al Gore would be so proud.
3. Unfortunately, as a result of the last item, I am guessing our electricity bill has increased by at least a third.  Jenn-Jen or I am awake through the night, this necessitates the usage of the lights, television, coffee maker, microwave, etc. during all hours.
4. Sleep really has become a luxury.  I would say that Jenn-Jen and I get an average of five hours of uninterrupted sleep in a twenty four hour period.  If we are lucky, one of us tries to sneak in a quick nap sometime during the day, usually when there is someone else helping out at the house.
5. We plow through a minimum of sixteen disposable diapers a day between Katelynn and Daria.  Given their relatively low “output” and risk of the dreaded “blowout,” we are trying to be frugal and use the less expensive Target brand diapers.  Each Jumbo pack contains fifty six diapers, so it is downright frightening to say that we consume one of these every 3.5 days.
6. It takes approximately forty five minutes to an hour to prepare, feed and settle down each of the twins.  This is, by far, the most challenging issue in parenting Katleynn and Daria in terms of time consumption and the testing of our threshold of frustration.  We spend up to two of every three hours of every day making sure the twins are well nourished.
7. During the hour to hour and a half between the last feeding until the next, we try to manage our time productively with other tasks such as laundry, bottle washing, self-hygiene, caring for Adam, and other chores around the house.  Jenn-Jen and I have learned to make the most out of each trip up and down the stairs by strategically placing items that need to be brought up or down right by our stairwell.  It almost does not feel right to go between floors without something in hand.
8. Next to diapers, baby wipes and water, coffee is the commodity that receives the highest level of consumption around the Owyang household.  Pounds and pounds of beans have been ground up and brewed through our trusty coffee maker in recent months, but there has been an obvious spike in the past three weeks.  My teeth are probably stained to a nice shade bordering between a smooth Kona blend and Arabian Mocha Java.  Sorry Dr. Chan (my dentist)!
9. I always wondered when our newspaper is delivered in the morning and learned that it comes usually around 3:30 AM, right before our local birds start to stir at 4:00 AM, and quite a bit before the sun slowly begins to brighten the sky around 5:00 AM.
10. I would have never imagined how gassy the girls could be.  We have learned to interpret Katelynn’s feisty battles with the bottle feeds to be a sign that she needs to expel a good belch, and Daria’s stomach emits a distinct rumbling pattern before she lets out her trademark projectile wet burp.  Although I missed it, Jenn-Jen tells me Daria’s record distance is three feet.  Since then, we have smartened up to feed near the kitchen over our tile flooring instead of the carpeted family room area.

I hope you found some of these to be entertaining, and I might have even persuaded a few of you to reconsider your birth control options.  All kidding aside, I still love being a father to all three of my children.  It certainly has been more difficult than I would have ever imagined, but I am seeing Katelynn and Daria develop each day and remind myself that they eventually do grow up.  It is hard to imagine our Adam was a baby once. 

As I try to squeeze some time in between the next round of feedings to upload some pictures, I hope you continue to follow along in our journey despite my departure from the more frequent updates to the blog.  There is definitely more news I would like to share about the progress of Katelynn and Daria, but for the sake of brevity, I will hold off until my next post.  At 1:45 AM from the comforts of my family room sofa, I bid you a good night as I go and warm up some milk for Daria’s feeding. 

Wednesday, May 28- Katelynn and Daria turned four months old today, but their corrected age would have made them approximately two weeks and two days old.  It is strange for me to tell people my girls are four months old, but weigh about seven and a half pounds.  Nonetheless, our angels are miracles from God and we are thankful they have come so far from where they were at birth.

I had mentioned our pediatrician supplying us with samples of formula to supplement Katelynn and Daria’s feedings of breast milk.  The specific product is EnfaCare Lipil by Enfamil, and it is an iron-fortified infant formula designed specifically for the needs of premature and low birth weight babies.  By adding the formula, we are providing an additional twenty two calories per fluid ounce.  Of course, the amount we are adding is not the same as what would be used if the girls were on formula alone.  So, even though EnfaCare provides twenty two calories per fluid ounce when mixed at full strength, we are supplementing enough to provide roughly ten percent more calories than the estimated twenty calories per fluid ounce in breast milk. 

Katelynn and Daria are taking well to the formula, but we have been warned there may be some initial constipation.  This news is not exactly what I wanted to hear right before taking a multi-day business trip across the country.

Thursday, May 29 - I spent today flying out from Sacramento to New York City via San Francisco.  As it has become the norm lately, my departing flight was delayed just enough that I missed my connection in San Francisco by literally less than one or two minutes.  Fortunately, there was another New York-bound flight taking off an hour after my original connecting flight.  I finally arrived at the John F. Kennedy airport around 8:30 PM and made my way to my rental car for the forty five minute drive into Stamford, Connecticut.

For most of the day and evening, I was restless and worried about my family back home.  Jenn-Jen was dreading the reality of not having me around until Saturday morning, and I felt helpless to be so far away.  My parents would provide some much-needed assistance, especially because they planned on staying overnight at my home until my return.

Friday, May 30 – As expected, Jenn-Jen is quite tired and desperately in need of longer blocks of sleep.  The good news is that my father is now able to successfully bottle feed Katelynn and Daria without much assistance.  This will provide Jenn-Jen some relief and hopefully ease the strain back home. 

After a very good training session at headquarters, I spent most of the evening working in my hotel room to make sure all is covered before I resume taking time off for the next two weeks.  It was tough to completely focus, knowing that it was too late for me to return home today.  At least I would be taking the first flight back home to Sacramento tomorrow morning.

Katelynn and Daria are doing well overall.  Jenn-Jen needed to take Daria to the ophthalmologist for her eye examination to check on her retinas, so she left Katelynn behind with my parents.  We learned that Daria’s left eye continues to be just fine now and there is marked improvement with her right eye too.  The plan will be to have a re-check next Friday, and if all goes well, the frequency of the assessment will be pushed out for two weeks.  We thank God for this answered prayer but continue to ask Him for healing. 

Today, we owe an extra thanks to our friend, Laura, for taking the extra step in caring for Adam during my absence.  We appreciate you not only watching Adam during the day, but bringing him to your small group in the evening.  It is through generous acts of service like this that we are able to get through each day with less worry in knowing our son is being taken care of in a safe environment where he can thrive.

Saturday, May 31 – I began my morning by waking at 4:00 AM Eastern, or 1:00 AM back here in Sacramento.  Although my flight from JFK would be at 7:05 AM, I wanted to make sure I had plenty of time to make the forty five mile drive to New York, refuel my rental car, return it and get through security.  I would end up having just enough time to pick up some breakfast and eat it on the plane after taking a nap.  Normally I try not to sleep much on flights to make sure I am not affected by jet lag, but given the erratic and broken-up sleep pattern back home, I decided to take advantage and get as much rest as possible.

Of course, there was another delay, and this time it was on our approach to San Francisco.  I nervously checked my watch every two or three minutes to see if it would be possible for me to catch my connection back to Sacramento.  Things began to look very bleak as we landed on the runway, but I prayed there would be enough time for me to sprint to the next gate.  I ran like a madman between the five gates and thankfully learned my connection was delayed!

I did make it home about an hour later than expected, but as I came through my front door, I finally found that sense of peace I had been longing for since Thursday morning.  The girls seemed to be doing well, Adam was happy to see me, and Jenn-Jen looked better than when I left.  Later I would learn that Daria is not only dealing with her reflux, but is now constipated too.  Still, it was great to be home.

Life’s a voyage that’s homeward bound. – Herman Melville

Sunday, June 1 - June is upon us and the year is coming to its midpoint soon.  I find it hard to believe Katelynn and Daria have been home only two weeks and a day, but then again, with the 24/7 schedule we have, it should not be such a surprise.  As much as I wanted to resume a normal schedule, it was not possible for Jenn-Jen or me to bring Adam to church today.  I just hope this is not so much of a precursor of things to come, as I still concern myself with the adjustments Adam will need to make to spending more time at home.

My sister, Christina, came by yesterday with a new toy for us to try out.  Last Christmas, my parents surprised us with an unexpected gift, a Nintendo Wii game console.  While I enjoy video games when I have time, I wanted to make sure this would not lead to a sedentary lifestyle for our son.  Since December, we have been quite diligent in limiting game time, and it actually does help that the Wii’s interface requires much more activity on the part of the player.  So, when Christina came by with the new Wii Fit, I was intrigued by this novel concept of a fitness application and was eager to give it a try.  We spent part of the evening indulging ourselves in laughter I have not experienced in some time and had the opportunity to hold onto the Wii Fit until Christina came back to pick it up on her way back to San Francisco.  Adam is already asking if we can get one for ourselves and I am seriously giving it some thought.

Now that I am taking the next two weeks off, I hope Katleynn and Daria will continue to gain weight at a healthy pace.  I am also praying for Daria’s eyes and an end to her bothersome reflux.  Katelynn is causing us a little stress during feeding time, mainly because of the struggle she puts up before taking the bottle.  We are not sure why she fights like this, and it does not happen each time.  Still it makes the experience less than enjoyable for all of us.  Jenn-Jen and I keep telling ourselves how this is temporary and all will improve with time.  If there was only a way for us to be optimistic, especially during the long nights where one of us is up alone with the girls.

I am aiming to continue posting to the blog each day, and new pictures should be up soon.

Nonetheless, we brought the twins in to see our pediatrician for a weight check and the plan was to have a few immunizations administered.  We were happy to learn that both girls have gained a decent amount of weight.  Katleynn is now at 7 pounds 1.5 ounces and Daria is 7 pounds 7 ounces.  It’s amazing they are in the range of what you would expect of a full-term newborn, but in reality, the girls are turning four months old tomorrow.

The doctor was pleased with the increase in Katleynn and Daria’s girth, but would like to see some more “catch-up weight gain.”  To accomplish this, we agreed to supplement the breast milk feedings with a small amount of Enfamil formula supplied by our physician.  This added amount will increase the calories by ten percent and may slightly thicken the consistency of the milk.  The thickening may help with a concern we have been facing with Daria.  It seems that she has been facing some increasing issues with reflux and appears to be in discomfort more often than before.  The notion of making milk a little thicker should, in our pediatrician’s opinion, make it more difficult to come back up.  We hope this will work and give our poor Daria a little bit of relief.  With this added change, we agreed to hold off on the immunizations until next week when we bring in Katelynn and Daria for another weigh in.

Katelynn is still having issues fighting us during her feeds.  Jenn-Jen and I are at a loss as to why she struggles so much when we offer her milk.  After a short battle, sometimes after a little bit of gagging, Katleynn becomes a bit lethargic and ends up taking her feed.  Most of the time, we are able to handle the difficulties with Katelynn, but it is definitely much more of a challenge during the middle of the night when usually only one of us is up with the twins.

Work started back up today, and it has been busy.  I am wary of my business travel coming up later in the week and pray that all will be manageable back home while I am gone.  Still, I am grateful to he able to take some more time off after this week. 

Time is still a scarce resource, and I am finding it more difficult to allocate time to blog.  Still, I want to keep up as much as possible and share this special part of our family’s lives with my children as they grow up.  If we can only get to the point where the feedings are going smoother and are more spread out.

In the past I have mentioned how it is vitally important in the values that Jenn-Jen and I hold to make sure we are being as impartial as we can when it comes to spending time with Adam.  While we have put much focus on Katelynn and Daria, Adam is still equally important to us and needs to be reminded how much we love him.  So, if it comes to a decision of taking an hour nap or taking Adam to the park for the hour, in almost all cases I will choose the latter. 

Today, I made good on that commitment and took Adam out on his bike to one of the parks only a couple of blocks away.  We spent some time exploring the playground and creatively using the equipment in ways to expand Adam’s confidence and help him overcome his developing fear of heights.  We started off using the teeter totter as a balance beam and through some encouragement, Adam began to feel more comfortable with his sense of balance.  As a father, seeing your child smile ear to ear in accomplishment is priceless.  Before long, Adam was climbing up structures in ways he had not dared to in the past and we went home feeling rejuvenated.

I know it has been a while since new pictures came up, so I wanted to share these photos of the twins with various nurses who have put their heart into the care of our angels.  Unfortunately, there are others that I did not have an opportunity to photograph, either by my forgetfulness or simply by the nurses’ shift schedule.  I hope to be able to bring Katelynn and Daria back soon so we can get them in a picture or two, as they have meant so much to us and our family.  I also wanted to throw in a couple pictures of the first bath the girls took at home. 

Nurse Janet with Daria ( 05.16.08 )

Nurse Christie & Nurse Janet with the twins ( 05.16.08 )

Nurse Jennifer with Katelynn ( 05.17.08 )

Bath time for Katelynn ( 05.19.08 )

Nice and Clean ( 05.19.08 )

The ophthalmologist begins by putting in two sets of eye drops, one to provide local anesthesia and the other to dilate the pupil.  After the drugs take effect, a spring action reverse-clamp is placed under the eyelids to keep them open.  The doctor then needs to use a very small spoon-like instrument and maneuver it into the eye socket underneath the eyelids to physical manipulate the eye to “look” in specific directions while he shines a bright, focused light from his headset through a magnifying lens.  The goal is to look through the dilated pupil and vitreous liquid in the eye to see the retina in the back of the eye and assess the condition of the abnormal blood vessel growth. 

Since I have my retina examined annually, I can tell you it is unpleasant and uncomfortable to go through this procedure.  The strength of the light shining directly at your eye can be unbearable and I imagine this is how it may feel to be interrogated by someone who has no intention on being bound by the Geneva Convention’s rulings regarding torture.  What is different, as I compare my personal experience with Daria, is that I am in constant contact with my optometrist or ophthalmologist regarding my discomfort threshold, and I can easily follow instructions to move my eye in a specific direction.  Daria has no concept of what is happening, and because of this, today’s examination created a very high level of anxiety and emotional pain, to the point where I began to shed tears as I was trying to simultaneously immobilize and comfort my wailing baby.  I am just glad Jenn-Jen was waiting in the adjacent room with Katelynn, where she was unable to see what was going on.

As for the results of the examination, I wish it was clear-cut and decisive, but the reality remains that we will need additional follow-up office visits.  The first will be on Friday, which is one of the days I will be back east in Connecticut for training.  Given it is a normal business day for the medical office, I am hoping there will be an assistant who can help with Daria’s examination so Jenn-Jen can be spared of the anguish I had to endure today.  The ophthalmologist did say Daria’s left eye is looking well, and her right has improved.  Nonetheless, he informs us the torturous blood vessels that have created the small traction detachment has not fully resolved yet, which is why we will need to bring in Daria next week and then two weeks after that.  This may be a recurring appointment for up to sixty weeks past Daria’s expected due date of May 12th, so we could be going through this procedure every few weeks.  I pray for her eye to heal, as she is now stuck between potentially losing her sight if the ROP is left untreated, or going through these agonizing examinations. 

If everything clears up with the abnormal blood vessels and the sixty weeks have passed, we will not have to worry about issues with the retina until Daria reached the age of twelve to fourteen.  At that point, there is an increased risk of retinal tear that may lead to a detachment similar to mine eleven years ago.  The good news is that since we are so keenly aware, we can catch a retinal tear early and have it repaired by outpatient laser instead of going through my experience of undergoing a painful scleral buckle operation.

If the traction detachment in Daria’s eye worsens and begins to pull at other blood vessels closer to areas closer to the center of the retina, we will need to take further action to prevent the loss of sight in her right eye.  In cases such as these, a vitrectomy (http://www.webmd.com/eye-health/vitrectomy) may be the next step.  In this surgical procedure, the vitreous gel in the eye is suctioned out, the affected part of the retina is repaired, and a silicone oil or gas is inserted back into the eye to replace the gel.  As you can imagine, this does not sound too agreeable to me.  Another potential option would be to follow a course proposed by the ophthalmologist who performed Daria’s second  retinal laser surgery in Walnut Creek and inject a small amount of the experimental drug, Avastin (http://www.gene.com/gene/products/information/oncology/avastin/vegf-angiogenesis-cancer.html), into the eye.  Avastin has an anti-angiogenesis effect, which in simple terms means the prevention of growth or formation of new blood vessels.  Avastin is used primarily as a anti-cancer drug, but there have been a significant number of promising cases where the drug has been injected into the eye of adults who are experiencing abnormal retinal angiogenesis.  The problem is there have been very few applications of Avastin with infants, and the idea of using a drug that prevents the growthof blood vessels with the developing circulatory system of a baby does not sit well with me at all.

Please keep praying with us that the retina in Daria’s right eye will continue to respond well to the last round of laser surgery so we will not have to consider other invasive or experimental options. 

After breakfast, we enjoyed having our friends spend time with our children before they needed to head out and visit with others on their whirlwind schedule.  My father arrived with food for lunch, which was far from our minds, since our stomachs were full and satisfied with our hearty breakfasts.  As Jenn-Jen and I walked Mike and Angie out to their car, we prayed together and promised we would continue to see each other soon.  Heading back into the house, I began to feel the fatigue of being up since the very early morning.  Jenn-Jen and I were able to take a needed nap as my mom and sister Christina arrived once again to offer their assistance.  Since the girls’ weights are still a concern, Jenn-Jen slipped out of bed shortly to tend to the feedings.

Despite our worry about how much milk the twins are taking in, Katelynn and Daria are continuing on their upward trend in their feedings and we have now increased the volume to 100 milliliters every three hours.  Jenn-Jen and I are very curious to find out where the girls stand in their weights on Tuesday when we bring them back in to the pediatrician’s office.  I am seeing an increase in energy level, particularly with Katelynn, and this is a comfort to see.  Daria is taking her feedings well, but seems to enjoy drifting off into sleep as soon as she finishes each meal.

Tomorrow will be a busy day, as the ophthalmologist that has been seeing our girls wants to dilate Daria’s pupils and check the condition of her retinas.  We continue to hope and pray the results of the last round of laser surgery continue to hold up and no further treatment is necessary.  With Daria’s eyesight at jeopardy, there is no room for us to lose focus of her eye examinations.  Katleynn’s eyes, on the other hand, has stabilized and will need to be checked in roughly one month’s time.

Before we go to the doctor’s office, I wanted to take Adam to church to keep him on a more or less “normal” schedule.  Additionally, one of Adam’s friends who recently moved away to Boise, Idaho will be there this weekend.  I will make sure I dose up on caffeine so I do not fade off during the peace of the sermon or prayer time.  Falling asleep during church is something I would rather not see happen, no matter what my sleep schedule may be.

Before the end of the weekend, I should have more pictures posted up on the blog.  With my family’s increased assistance around the house, I hope to be able to find a few minutes during the day to sort through the recent photos we have captured.

Just thinking about the weather makes me realize how change passes us by as quickly as it arrives.  Everyday since Katelynn and Daria arrived home has been filled with change, and as their parents, Jenn-Jen and I are in constant adaptation to our life as a family of five.  Today we continue to work on making sure our girls are getting enough calories to pack on the ounces, and we have added an new weapon to our arsenal against the forces that fight us in this effort.  Through our pediatrician’s suggestion, I ran out to our local WalMart to pick up some Simethicone 20 mg (http://www.medicinenet.com/simethicone/article.htm), which is an anti-gas medication.  It basically acts by allowing smaller gas bubbles to join up and create larger ones which are easier to pass by burping or passing gas.  We decided to add Simethicone to Katelynn and Daria’s bottles to help them rest a little better.  Since they came home, we have noticed an increase in gas, particularly with Daria that has shown up in the spitting up of milk and the occasional symphony of baby farts.  Now that we have added the medication, we have seen improvement with the girls, which trickles down into one less thing to concern us parents. 

Having Katelynn and Daria home now for nearly a week has been wonderful and draining all at the same time.  In our perpetually tired state, we found much comfort and relief when the reinforcements, namely members of my family, arrived to offer support around the house.  As I have mentioned in a previous post, the twins’ feeding schedule keeps us moving in a repeating pattern of making sure the girls are nourished, leaving little time for anything else.  When my parents and sister, Christina, showed up with extra hands and a willingness to help, Jenn-Jen and I were able to find some rest.  This kind of support is priceless at times like these, when we are stretched thin and lacking sleep.  Thanks Mom, Dad and Christina for all of your help.

Additional support came in the evening, as our dear friends, Mike and Angie, arrived from out of state to spend a night with us.  They had come into town for the wedding of our lead pastor’s eldest daughter and will stay with us through late Saturday morning.  We have missed them and their family dearly since they moved back in December, so it was a huge blessing to have them come and visit, even if it would be for a short time. 

Closing out tonight’s post, I would ask you for some prayer specifically for Jenn-Jen and me.  I am going back to a short work week on Tuesday and will be flying out to company headquarters in Connecticut for training on Thursday morning.  Unfortunately, I will not be back home until late Saturday morning, and during this time, Jenn-Jen will be without my physical support.  My mom will be staying over to help out in my absence, but I have no doubts it will be a rough few days for Jenn-Jen.  If you would simply keep our family in prayer for this upcoming week, we would appreciate it very much.  I will resume my time off from work beginning in June, so I am grateful for the additional opportunity to focus on my family.  Thank you again for all of your prayers, encouragement and support!

As close as we came to not being where we are today with our family tree, we are extremely grateful for the joy God has provided through Adam, Katelynn and Daria.  There will come a time again when we can take that vacation or even celebrate our anniversary like we used to, but as I mentioned previously, I would not have things any other way.  I joked with Jenn-Jen and told her how I am not a very good husband on our anniversary, but I come bearing a gift that is worth its weight in gold:  sleep.  So, as my wife is hopefully sleeping soundly upstairs, at least until she is awakened by the need to pump, I gladly keep watch over the other girls in my life down here in our family room.  I also cooked breakfast, if that adds an extra deposit to the Bank of Good Husbands. All kidding aside, both of us know how our lives have been turned around to the point where special days such as anniversaries must be put on the back burner until everything settles down.  As for my present, I found it this afternoon watching my wife smiling while she was on the ground with my girls playing during “tummy time.”  It does not get any better than that.

With the girls, it is a relief to see them taking in more milk during their feeds.  We are still anxious to see if they are gaining weight and we are still tired with our very busy schedule.  Each feeding can take between thirty to sixty minutes, and we usually have a buffer of forty to forty five minutes between Katelynn and Daria.  Adding in the time to change diapers, warm the milk, clean and prepare another batch of bottles, it feels as if we are spending every waking moment making sure the twins are fed.  Jenn-Jen also has the extra burden of pumping, at least until we are able to get the girls to take from the breast.  The roughest part for both Jenn-Jen and me at night, when only one of us is up taking care of Katelynn and Daria.  If the feedings go well, as they have been the last day, then all is fine.  The trouble comes when it takes more than forty five minutes to get Katelynn and Daria to take the minimum of 60 milliliters per feed and one or both of the girls is fussing.  Despite this, each time I look at my girls, I smile and thank God we have both of them.

Additionally, at the hospital, we had the benefit of Katelynn and Daria being weighed on a daily basis.  Now that we are at home, this is not so much of an option unless we decide to go out and purchase a baby scale.  Our pediatrician strongly recommends against this and wants us to allow him to worry about the girls’ weights.  For some reason, I did not note Katelynn and Daria’s weights on May 17th when they were discharged, but if we compare the weights on May 16th to yesterday’s measurement at the doctor’s office, you may see why I am concerned.  Katelynn came in at 6 pounds 10.5 ounces, while Daria was 6 pounds 12.6 ounces, the day before they came home.  Yesterday, they measured 6 pounds 8.5 ounces and 6 pounds 14.5 ounces, respectively.  Our doctor tells us that a normal infant should be gaining between two to three ounces daily.

The two ounce loss for Katelynn may not have been so alarming if Jenn-Jen and I did not have a conversation with Tracy, one of our nurses back at the hospital, about the importance of the girls’ nutrition.  Apparently, premature babies have a higher drive for sleep than for food, so it is very important to not let them sleep as much as they want without a feed.  Given a choice, our girls may choose to sleep half a day or longer and their hunger would not upset them enough to provide us with a cue.  If this is left unchecked, a condition called “failure to thrive” (http://www.nlm.nih.gov/medlineplus/ency/article/000991.htm) can occur, where a baby can become underdeveloped in terms of weight, height and head circumference.  This will often manifest in additional developmental delays with physical, mental and social skills, as well as possible delay in adolescence.  Needless to say, failure to thrive or FTT, scares the daylights out of me when coupled with the intraventricular hemorrhages (IVH) that have affected both Katleynn and Daria.  Anytime the words “development” and “delay” are used in the same sentence, you can guarantee it will provoke in me an uncomfortable level of anxiety.

To combat FTT, Jenn-Jen and I agreed to switch the girls back to a three hour feeding schedule so they are more successful in taking the full, but decreased volume of their feedings over shorter periods of time.  The hospital had tried to move to a four hour schedule for the benefit of giving Jenn-Jen and me more time in between, but to us, the inconvenience by far outweighs the potential consequence of allowing our daughters to face issues with their development. 

Transitioning back to the three hour schedule has been a little rocky, as the girls initially seemed tired and disinterested in feeding.  This feels exponentially magnified with it is three or four in the morning and I am sitting alone, trying to give one drowsy or combative daughter her bottle, all the while watching the clock to make sure I am not late in starting the feed with the other.  Having gone through this scenario last night, I can tell you that I have not felt so frustrated and alone since the girls came home.  The good news is the girls did eventually adjust to the new schedule, and are actually taking close the the increased volume we had provided over the course of four hours.  What this tells me is the lethargy and fussiness during the night may actually have been associated with a lack of sufficient calories.  Since then, we have been doing much better and pray that the trend will continue.

Other than this major concern, Jenn-Jen and I are still trying to work through a decreased and periodic sleep pattern.  As I may have mentioned previously, one of us is always downstairs with the girls twenty four hours a day, so my wife and I have not slept in the same bed since we woke up four days ago to bring Katleynn and Daria home.  I really do not know how long we will stick with this process, but we also know that keeping the girls outside of our bedroom allows one of us uninterrupted sleep.  I have the gift of sleeping through most anything, but the girls’ periodic noises would most certainly disrupt Jenn-Jen from resting at all.  I would love to hear any ideas you have on how you have addressed this issue.

Thank you again for keeping up with us through this new chapter of our family’s adventure in parenting twins.  We are still learning so much and working on becoming even more flexible and adaptable, and I can honestly tell you, despite how tiring this may seem, I love my family exactly the way they are.  I would not have it any other way…

No temptation has seized you except what is common to man.  And God is faithful; he will not let you be tempted beyond what you can bear.  But when you are tempted, he will also provide a way out so you can stand up under it.

1 Corinthians 10:13 New International Version

Today brought a full agenda beginning at 5:00 AM when Jenn-Jen came up to get some sleep.  After clearing the cobwebs in my brain, I enjoyed the quiet morning feeding my twins and enjoying my coffee as I watched the sky slowly brighten with the sunrise.  It would not be long before I began to hear our resident cliff swallows chirp and tweet, undoubtedly in preparation for their own busy day of hunting for insects and nesting high up above our entrance.

As the morning feedings were timed fairly well, I had an opportunity to have breakfast with Adam before he would be picked up for preschool.  Normally, Adam would spend the afternoon at a friend’s house after school, but today he asked if he could come home instead.  I am actually very happy to hear my son request this, since I have been concerned about transitioning him back to a “normal” life where he will not be filling each weekday with a play date. 

It would turn out that we would still have an abbreviated time of play for Adam today.  When our good friend, who happens to be the mother of Adam’s best friend, came over to bring Adam to school, I invited her to come back and spend a little time visiting with the twins.  She agreed and we spent the rest of the morning with her good company.  Having her over was a great reminder that, contrary to what life has been like recently, the world does continue to revolve outside the cofines of our home. 

With our friend over to lend an extra set of hands tending to Katelynn and Daria, I volunteered to pick up Adam and his friend from school.  We would end up having lunch at home while the boys played together while the ladies talked.  Life almost began to feel normal again, if only for that short amoung of time.  There is really nothing like having good friends around to keep the spirits up.

Our afternoon would be very hectic, so I asked my parents to come over to help watch Adam while Jenn-Jen and I took the girls to their first pediatrician appointment.  We have been extremely pleased with our doctor since friends referred him to us shortly after Adam’s birth.  Now that his office is only a couple of miles from our home, I really could not ask for a better arrangement.  Feeding time would fall during the appointment, so we arrived at the office, prepared with bottles for any opportunity we could get to offer milk to the girls.  What we did not prepare for was a way to warm up the milk, so after some asking, Jenn-Jen was able to find a very helpful laboratory technician who was willing to offer her assistance.  I almost fell out of my chair when Jenn-Jen came back with the bottles sitting in a hot water bath where the container was one of those over the toilet receptacles used to measure the volume of urine passed!  Of course, this was unused and completely clean, but the sight of our bottles bobbing in this most unusual container would probably cause onlookers to question our parenting ability.  I wish I had taken a picture to share, but then again, you may start to have doubts about us.

Everything with the girls checked out well overall, but Katelynn, unfortunately, has lost a little bit of weight.  While this is a big concern to Jenn-Jen and me, our pediatrician offered us a couple of options to change the trend.  We decided to increase the frequency of the feeds to every three hours instead of four, with the hopes that the slightly decreased volume given more often will allow Katelynn and Daria to actually finish their feeds.  Up until today, in almost every feeding, there would be breast milk left over.  Added together on a daily basis, this amounted to an amount we could not ignore.  Feeding the girls every three hours would equate to an increased drain on our already limited time, but we will also not allow the girls’ weights to suffer.  The plan would be to bring Katleynn and Daria back into the doctor’s office next week to do a weight check and get their next set of immunizations. 

After the visit to the pediatrician, we zipped back home for dinner with my parents and Adam.  I would need to leave shortly and bring Adam to Awards Night for participating in Awana (www.awana.org) this year.  Awana meets at a local church only a few miles away, so we were able to go and be back in less than an hour.  Adam has had a wonderful experience this year and I am sure he will miss Awana during the summer break.

Now that I am officially behind in posting on my blog, I still remember thinking to myself last week how I should have extra time to do things I wanted to get done when the girls are home.  Somehow I convinced myself the time spent commuting to and staying at the hospital would be reallocated to things like keeping the house in order, additional time to sleep, or time spent with Adam.  Maybe that will come in due time, but right now, I feel busier than ever. 

Now that we are under one roof, our lives are much more centralized, but it is still an adjustment to adapt to Katleynn and Daria’s feeding schedule.  We are currently trying to feed them every four hours, but the results are mixed.  On occasion, the girls will quickly finish the 90 milliliters within a thrity minute time frame, but it is more common for us to need to push Katelynn and Daria to take as much as they can.  This will be an issue we are looking to bring up with the pediatrician, whom we have scheduled an appointment tomorrow afternoon.

In the meantime, I am working at adjusting to our new sleeping (or lack thereof) schedule.  Since the twins are feeding every four hours, and each meal is taking roughly thirty to forty minutes per baby, I feel as though we are always warming up or serving breast milk.  Jenn-Jen and I have decided to keep the girls in a crib downstairs for the time being, and one of us will always be nearby to tend to the diaper changes, feedings and play/cuddle time.  In terms of the nights, one of us stays up with Katleynn and Daria, usually through an early morning feeding while the other sleeps.  Sometime between two and five in the morning, we switch off to make sure we are getting sleep, even if it is in smaller blocks of time.  I am not sure if this is the best way for us to function in the longer term, but it has been our mode of operation since the girls came home on Saturday.  As much as we would like to keep Katelynn and Daria in their crib upstairs in our bedroom, the girls make far too many noises to allow either of us restful sleep. 

Today’s big event was Katelynn and Daria’s first bath at home.  From our experiences in the NICU, we knew both of our babies have an affinity to water.  I am glad we have been through the bathing experience with Adam when he came home from the hospital as a preemie, so the process today was not as traumatic as it could have been.  In a quick and efficient joint effort, Jenn-Jen and I we were able to wash up Katelynn and Daria and get a sense of satisfaction in the results of the cleaning. 

Life at home sure has been different and I am hoping to be able to adjust better to the rigors of raising twins.  In the meantime, I could use a few hours of sleep right about now…

I still remember writing about how it is best to let butterflies struggle through their metamorphisis as they emerge from their pupae (http://owyang.wordpress.com/2008/02/09/february-8-2008-butterflies/).  As I sit here watching Katelynn and Daria stretch and use their little voices, I cannot help but smile and think about how God has given my babies a breath of life, even if it seemed so harsh and exhausting while we were toiling through those early days.  Tonight they sleep here next to me, no longer attached to any breathing or feeding tubes, IV lines, or vital sign monitors.  In their struggle to emerge as the beautiful butterflies they are, I am so proud of them for fighting so hard to beat the odds and be free of these “chains” that have kept them attached to one machine after another.  My dear loved ones, the reality is setting in and, more than ever, I feel we have secured a major victory.  While I will not be so naive to believe all will be well and smooth going forward, I am rejoicing and celebrating quietly here next to my angels, who seem to be in a perpetual stretching mode. 

In last night’s post, I forgot to mention how we had a brief dramatic moment here at the Owyang home.  All appeared well until the evening when I decided to go upstairs for a few things.  I noticed the air coming out of our vents seemed warmer than usual and checked our thermostat.  Despite having our air conditioning turned on, the upstairs temperature was reading at 83 degrees.  I ran back downstairs to find the air conditioning unit outside trying to power up the fan unit to no avail, and a foreboding sense of worry began to envelope me.  I had mentioned our recent hot weather and yesterday’s temperatures topped out at 102 degrees, a new record.  Thankfully, the air conditioning ceased to function in the early evening, after the blazing sun had already set.

In my worried state, which was beginning to transform into a mild panic, I began thinking about calling a HVAC technician and could not help but wonder how expensive it would cost to have a repair done on a Saturday night.  Here is where Jenn-Jen’s sensible nature comes in, as she says to me “Why don’t you call your father, since he owns a restaurant and probably would have somebody he uses regularly.”  Now why did that thought not come across my mind?  I think God uses moments like these to remind me I married the right woman. 

After a few rounds of back and forth phone calls with my father, I was relieved to learn his primary HVAC technician would be coming out to repair our system in a couple of hours.  I was already preparing to leave our windows open and turn on every ceiling and portable fan we had available, but the news took me by surprise.  The technician arrived at 11:30 PM, and quickly diagnosed the problem as a blown capacitor that is connected to the fan and compressor unit.  In a couple of minutes, he replaced the damaged part with one that would be a temporary fix until he brings in the specific one for the system.  I was a little concerned if this part would blow out before the follow-up visit, but was assured it would actually last months, if not a year.  The technician left and informed me he would be back as early as Monday to finish his installation.  I am happy to say there have been no cooling issues since the repair was made.

 Ah, the air conditioning just turned on… music to my ears.  Well, Katelynn and Daria are beginning to stir and  it is coming up on feeding time again, so I would like to close with a few recent pictures. 

Adam at the McKinley Park playground ( 05.11.08 )

Katelynn (left) and Daria (right) two days before discharge ( 05.15.08 )

The twins trying to hold hands ( 05.15.08 )

Adam, Katelynn and me the day before discharge ( 05.16.08 )

The girls dressed up to finally go home ( 05.17.08 )

Our family photo in Room C ( 05.17.08 )

Adam watching over his sisters in their infant car seats ( 05.17.08 )

Goodbye Special Care Nursery, we will miss you! ( 05.17.08 )

Daria (left) and Katelynn (right) settle in at home ( 05.17.08 )

As it was the case yesterday, we found ourselves with too much to do in too little time.  Throughout the morning, we hurried from one area of the house to another in a near futile attempt to clean, sort and organize as much as we humanly could.  You would think that we would have our system in place, given how we are not first time parents, but as Jenn-Jen would say, things always take longer than planned.  So, with our house cleaning, instead of setting the bar at an unattainable height, we settled for mediocrity and called it “good enough” when we left to pick up Adam from Chinese school at 11:20 AM.

The discharge process was a combination of packing up all of our girls’ belongings and going over the multitude of medical appointments to come.  It may be the case that we no longer need to drive to the hospital, but Katelynn and Daria will require a considerable amount of follow-up.  For Katelynn, we will have appointments with the ophthalmologist, neurologist, pediatric neurosurgeon, and physical therapist, on top of our normal pediatrician visit.  Daria will require a similar set of assessments, but will not need to see the neurologist or pediatric neurosurgeon. 

As we wrapped up the discharge, we were very happy to see a couple of our favorite nurses.  After taking a few pictures and videos, we were ready to offer our hugs of gratitude and say our goodbyes.  A number of my family would wait for our return at our house, which always makes a homecoming warmer and special.  We have been warned not to take Katelynn and Daria to congested places, such as the mall or church, for the next three to four months.  This makes it difficult for us to plan the party we had hoped to throw for the girls, but we still intend to have our gathering to celebrate our precious Katelynn and Daria.

While we will miss the dear friends we have made at Sutter Memorial Hospital, we look forward with high hopes towards this new chapter for the Owyang family.  I thank you for staying with us through our journey.  Whether by sheer coincidence or divine plan, I thought you may be interested in knowing that as of this morning, our blog surpassed ten thousand page visits since I started my posts in late January.  I find this amazing, considering the fact I originally planned to share the blog with only a handful of close family and friends.  It is incredible how God always takes the smallest plans and finds a way to magnify them for His glory.  My goal is to continue updating my blog regularly and will have more pictures up before the weekend is over.  So at 2:34 AM, I wish all of you a goodnight from the comfort of my family room.

Throughout the morning and early afternoon, Jenn-Jen, Adam and I spent time together at home.  I had promised Adam I would help him with a craft he found in book given to him by his Aunt Janet, so the two of us worked together drawing, cutting and pasting together various pieces of construction paper.  The end result was a pirate’s hat and eye patch which came out better than I expected, since crafts, by far, are not my forte.  Adam has been in a pirate theme for some time, so these new additions will go along nicely with the cardboard and aluminum foil swashbuckler’s sword I pieced together for him a few weeks back. 

During the afternoon, we met up with my mother, sister Janet, and my nephew at the hospital so they could spend some time with the girls.  Adam would leave with them to give Jenn-Jen and me the evening to enjoy some time alone.  While we were in the NICU, we learned that the ophthalmologist would be coming by in the evening to perform eye examinations on both Katelynn and Daria.  We are still anxious about Daria’s eyes, since there has only been one assessment since her last round of laser surgery.  As the examination was moved up to this evening, it will clear the last hurdle keeping the girls at the hospital.

After enjoying a nice dinner out, Jenn-Jen and I ran to our local Target store to pick up a couple of things for tomorrow and headed straight back to the hospital.  We knew a couple of the girls’ primary nurses were working tonight, so we wanted to see them and bid our farewells.  Some of the nurses we have grown so fond of have been with us since the early days after Katelynn and Daria’s birth, and in our hearts, they are almost like family.  It is so strange to say this, but I already miss these wonderful people who have faithfully been at our Katelynn and Daria’s bedside.

We happened to arrive as the eye examinations were about to take place, so I learned that Daria’s right retina still has a minor temporal traction detachment.  Hearing this news alarmed me, but the doctor took me through a visual explanation of the differences between this type of detachment versus the one I had over a decade ago.  Apparently, Daria’s condition will not threaten her vision if it continues to stabilize, so we will need a follow-up examination in roughly one week.  The type of detachment I went through was, by far, much more unstable and required immediate action.  Katelynn’s retinopathy of prematurity is confirmed as resolved, just as we expected from the results of the last assessment.

Tomorrow is near and we are excited as ever.