March 30, 2008 – A surprising reaction

The news of the girls’ retinopathy of prematurity essentially derailed our weekend plans to prepare the nursery and go hunting for a minivan.  As I am writing, I feel the physical, mental and emotional exhaustion beginning to take its toll my body and mind.  I was really expecting today’s laser surgery for Daria to be uneventful and routine.  The procedure was performed without any issues and Daria seemed to have tolerated her sedation via fentanyl just fine.  What happened in the hours to follow surprised me in a most unpleasant way.

As Jenn-Jen was preparing to leave the NICU to go pump, the nurse noticed Daria’s temperature was lower than normal.  Rather than moving Daria into a heated isolette incubator, she proposed skin-to-skin, or kangaroo, holding as the solution to warm up our daughter.  As I was in a t-shirt, I asked for a hospital gown so I could properly put Daria up against my chest.  Everything appeared to be going well, and I could feel my warmth beginning to transfer over.  All of a sudden, the monitor’s alarm went off as Daria’s oxygen saturation level began to drop rapidly.  Her normal parameter is to keep her saturation above eighty three percent, but I was seeing readings in the upper forty percentile.  To make sure Daria recovered as quickly as possible, I handed her back over to the nurse, who in turn, moved Daria back into the crib.  Unfortunately, Daria’s saturation level decreased even more, and I recall seeing it reach eighteen percent at one point.  I became very nervous and felt extremely helpless as I watched the skin coloration on my daughter’s face turn from pink to an ashy gray.  The nurse moved quickly and gave Daria oxygen and even a few extra breaths through the manual ventilator bag.  After what seemed like an eternity, I began to see improved saturation levels.  Nonetheless, Daria’s temperature level had dropped so much that it was now necessary for her to be moved into the neighboring Giraffe incubator to warm back up to a proper temperature level.

While all of this was happening, I also felt the pressing need to go and pick up Adam, who had spent most of today with my mother.  It was near dinner time and we had stayed at the hospital longer than we had originally anticipated.  Instead of having the two of us leaving the girls at such a difficult time, I volunteered to go and have dinner with Adam and my mother while Jenn-Jen stayed behind with the twins.  After we met up to grab a quick bite at In & Out, we went back home to prepare Adam for bed. 

During the short drive back, I called Jenn-Jen and learned that there had been even more excitement while I was gone.  Apparently, the severe drop in oxygen saturation with Daria was related to her reaction to the sedation.  She ended up going through another similar drop before the neonatologist on call decided to administer Naloxone, better known as Narcan (http://en.wikipedia.org/wiki/Naloxone), to counter the effects of her sedation.  You may have seen on television or the movies that Narcan is often used in cases where an individual, usually an adult, is overdosing on an opioid, such as heroin.  The drug hits quick and hard, and pulls the recipient from a depressed, lethargic state into a hyper-alert condition.  I was not there to witness it myself, but Jenn-Jen walked into Room B after the 6:45 PM shift change ended to find multiple nurses surrounding Daria’s bed.  The Narcan did what it was supposed to, and then some, as Jenn-Jen informed me that Daria’s heart rate was reading over two hundred twenty beats per minute.  The twins typically have their heart rates between one hundred fifty and one hundred seventy five beats per minute, so this drastic increase was extremely alarming. 

The nurse explained that they would need to keep a very close eye on Daria to watch the effect of the Narcan to slow down.  If Daria’s heart rate continued to maintain over two hundred beats per minute, then they would need to have the neonatologist come in and take more drastic measures.  By the time I arrived back at the hospital, Daria had stabilized to the level where all seemed almost normal again.  Jenn-Jen was fairly upset to watch Daria feel so aggravated, and she explained that our little angel was sucking at her pacifier with all of her strength to try to self comfort.  I missed out on seeing all of this, and that may be a good thing.

Katelynn had a rough day in a different way.  She received four of her immunization vaccines today (which I will probably list tomorrow), and the pain in both of her thighs seemed to be agitating her throughout the day.  The nurses gave her some acetaminophen to help with the soreness, but we noticed that Katelynn only seemed to feel consoled when she was being held by either Jenn-Jen or myself.  With this happening on top of Daria’s issues today, both Jenn-Jen and I are left completely worn out. 

I had planned to put up a few more photos on the blog today, but I think I will need to save that for another day when I have more energy.  With the odds stacked in favor that Katelynn will need to undergo the same procedure in a week or so, I am a little unnerved to think that we may go through another day like this again in the near future.  Daria is scheduled to have her eyes checked again in a week, and the ophthalmologist will check Katelynn’s eyes then as well.  Please keep the prayers flowing.

March 29, 2008 – Retinopathy of Prematurity

Today was spring cleaning day around the Owyang home.  With the help of my family and a friend from church, we worked through the first half of the day to tidy up the house.  It is far too easy for things to become disorganized and disheveled in our house, so our time and effort spent was rewarded with the satisfaction of seeing a cleaner living space.  By no means are we done, at least there is visible progress.  I was able to successfully reassemble and clean up Adam’s old crib, and it certainly adds a warm feeling to our master bedroom.  The nursery has been cleaned up, but there are boxes of various items that will need to be relocated to other parts of the house.  I imagine we will continue the battle against disorder tomorrow with renewed energy.

Jenn-Jen and I were able to zip over to the hospital this afternoon, as one of my sisters was kind enough to take Adam for the day.  As we spoke with Katelynn and Daria’s nurses, we learned that the girls had their eyes checked again today by the ophthalmologist and there was a new development.  We met with the doctor and he informed us that Daria would need to undergo laser treatment for her Retinopathy of Prematurity (http://www.ropard.org/about_ropard.php and http://www.nei.nih.gov/health/rop/), or ROP, tomorrow afternoon.  ROP is a serious eye disorder that affects premature babies typically born before thirty one weeks gestation and weighing less than 2.75 pounds.  With ROP, a premature baby has abnormal blood vessels in the eye that develop incorrectly, away from the edges of the retina as they should.  This growth pattern ends up creating strain on the retina and eventually can lead to retinal detachment and blindness.  The good news is that the laser treatment should resolve the disorder and Daria should be able to keep her eyesight.  The bad news is there is a chance of side vision impairment and potential longer-term complications, such as myopia (nearsightedness), cataracts, glaucoma and an increased chance of retinal detachment, that occur later in life for patients that have ROP.  Additionally, we learned that Katelynn may be affected too.

Having personally gone through a retinal detachment, I can appreciate the severity of the ROP issue and am grateful that we live in an age where technology allows for the girls to have their vision saved.  My scleral buckle operation does not bring back fond memories, so I am happy that the laser procedure is relatively quick and painless.  Daria will need to have eye drops put in for a number of days after the treatment, but there should not anything else for us to worry about.  I did learn that Daria is at the Stage 3 with Plus Disease phase of ROP, which means that the blood vessels in her retina are enlarged and twisted to the point where laser treatment is needed to save her from a retinal detachment.  Katelynn is showing as a stage 3 without the plus disease, so the ophthalmologist will recheck next week to see if treatment is required.  Daria will be undergoing the laser treatment right outside the NICU tomorrow (Sunday) at 3:30 PM, so please pray for an uneventful procedure and healing for her eyes.  Please also keep Katelynn in your prayers, as we hope her ROP does not worsen.

I called into the NICU this evening and found out that Katelynn’s temperature has dropped to the point where the nurse does not feel she is properly maintaining her body temperature.  As a result, Katelynn had to be moved back into a Giraffe incubator bed so the heater can keep her warm.  It seems that we just cannot keep the girls together in the same bed for very long, and all of this movement from separation to being together back to separation is becoming a little tiring.  Once Katelynn is showing signs that she is able to keep her temperature up, they will move her back into the open air crib with Daria. 

It sure is shaping up to be a busy Sunday tomorrow.  I just prefer to have more of the “good” busy days than these that are filled with unwelcome surprises. 

March 28, 2008 – Happy Birthday!

Happy birthday Katelynn and Daria!  Today we celebrate the beginning of the third month of your lives and we praise God for bringing you into our family.  Both of you have been through so much in these two months, and we are so proud of you for staying so strong through all the different battles you have fought to be here with us today.  When I pray for you each day, I envsion a team of angels keeping watch over you as you continue to grow moment by moment.  I can almost see them standing behind the doctors and nurses, guiding their hands to heal, nurture and comfort you.  Although we still have a long journey ahead for us, I want to let you know that Mommy, big brother Adam and I are praying to God to bring you home happy and healthy soon.  We love you, Katelynn and Daria.

I am happy to report that Daria is now completely off the oxygen supplied through her nasal cannula.  Less tubing, wires and sticky adhesive leads means we are taking another step closer to home.  Personally, it brings so much satisfaction to see more of our girls’s faces, so you can imagine how rewarding it was to just watch Daria breathe freely on her own without any help.  With the exception of a couple of minor oxygen desaturations, which she was able recover from all by herself, Daria had an excellent day.

Katelynn is also doing very well.  The pediatric neurosurgeon came in to see Katelynn and everything is well with her extraction site.  There is a small metallic staple suture on her scalp, but I am pleased as can be to see the bandage dressings removed from her head.  Katelynn is also wrapping up her regiment of antibiotics, as there seem to be no residual signs of infection.  Keep up the great work!

After spending the afternoon at the hospital and bringing Adam to my parents’ home for an overnight stay, I became eager to put together some furniture.  My evening was spent assembling a dresser that will be the twins’ nursery storage, so I am a little drained.  Before I slip into unconsciousness, I did want to share a few pictures with you to give you a peek at the twins.  I am thinking about going back through previous posts and posting digital photos correlating to the date they were taken, but I will keep you apprised of my efforts there.  Thank you for all of your prayers and encouragement through these past two months.  God is good and He is listening!

 Links to photos:

Katelynn (left) & Daria (right) – two months old today (03.28.08)

Katelynn (left) & Daria (right) – together in their Giraffe incubator bed (03.21.08)

Big brother Adam visiting Katelynn (bottom) & Daria (top) (03.22.08)

March 27, 2008 – On this weekend’s agenda

Once again, the weekend approaches, and like weekends past, we have tasked ourselves with important goals that need to be accomplished.  First and foremost on our minds is preparing Katelynn and Daria’s room for their eventual homecoming.  You would think that we are further along in setting up our home nursery, but that is quite far from reality. 

My first task will be to reassemble Adam’s former crib, which holds a special place in my heart, and relocate it into our bedroom until the twins’ frequent nursing schedule eases off.  Clearing out and cleaning the nursery will be the second phase, which is no small task in itself.  Until now, the room has been used as a utility/storage space, so there is considerable work that needs to be performed to make it baby-friendly.  I am quite anxious to get this done, and we are blessed to have a very dear friend offer her amazing gift of painting to transform our plain white room into the girls’ sanctuary.  Sometime during the weekend, we will need to get out and do some minivan shopping.  Adam might even find some fun in climbing in and out of roomy vehicles with strange sliding doors.  I actually have fond childhood memories of taking trips with my parents to car dealerships when they were looking a new auto.  Of course, I have not forgotten that I will have some pictures of the twins up during the weekend as well.

Katelynn and Daria have taken to their new hospital-issue crib nicely and may even enjoy the extra room compared to their snug incubator bed.  I did have the opportunity to hold both girls tonight and they spent most of the time snoozing away in my arms.  Katelynn seems to be doing well without her ventricular drainage system attached, and her head circumference has remained consistent.  Time and a more detailed brain image via a CAT or MRI scan will tell if the permanent ventricular shunt will be needed.  For now, she still has a dressing over the site where the external drainage system was removed, and this is keeping her electroencephalogram (EEG) postponed until it is removed.  Daria continues to do well and is working her way towards the day when she will no longer need supplemental oxygen flow.  She is at the best she has ever been, with only a quarter liter of pressure at 21% oxygen (room air).  The desaturations still occur from time to time during her compressed feedings, but she is progressing just the same.

Well, my eyelids and hands are beginning to feel heavy.  When that happens, complete sentences seem to take an eternity to compose, and it does not help that I have the ability to fall asleep just about anywhere.  I should get some rest to prepare for the busy weekend ahead.  Otherwise, I may wake up to a screen full of jibberish.

March 26, 2008 – The EDMD is out

The changes seem to be happening at such a fast rate in the NICU.  Katelynn’s external drainage and monitoring device (EDMD) was removed this afternoon, and so far, there has not been a need to replace it with a ventricular access device (VAD) or ventricular shunt.  Taking the EDMD out was actually less complicated than I expected, as it was performed at the bed by the pediatric neurosurgeon’s assistant.  I was at work when the extraction occurred, but Jenn-Jen was asked to leave the room while the procedure was quickly performed.  Katelynn appears to have tolerated it very well, but was given a twelve hour dose of acetaminophen to help with any residual pain.  Since the EDMD was taken out during the day, Katelynn’s scheduled electroencephalogram (EEG), used to monitor any seizure activity, is postponed until tomorrow at the earliest.  The nurses will closely watch Katelynn’s head circumference and the softness of her fontanelle going forward, and we pray that there will not be a need for any more surgery.  If the production of her cerebrospinal fluid is in equilibrium with the absorption rate, all will be fine.

In addition to this, Katelynn and Daria have moved into an open air crib as of today.  Since their birth, they were moved from a warming bed into a GE Healthcare Giraffe Omnibed, pictured here:  http://www.gehealthcare.com/usen/perinatal/micro_environments/giraffe/images/omnibed_fmly_bdb_l.jpg.  Adam fondly calls this the twin’s “box,” as the top is kept down most of the time to keep in the heat and supress excessive noise and light.  Seeing the girls in a crib, even an industrial-looking hospital one, is uplifting for us.  The move signifies the girls are able to maintain their body heat, so this is wonderful news.  The only inconvenience we now face is that the crib cannot be raised or lowered to help with handling or viewing the girls.  It is also a little awkward to change their diapers, since the positioning of the opening to the tent-like cover is such that we are approaching from their feet.  I will need to make a mental note to keep the “shields” up when doing diaper duty, lest I be sprayed by a well-timed precision bowel movement.

With all of the major positive changes happening together this week, I am a little weary to say that I will need to fly back east for a team meeting for three days next week.  While it will be great to see my colleagues who have been so supportive and encouraging the past couple of months, I hope I will not miss out on any other important milestones or changes.  At least I am comforted in knowing there are no major concerns with either Katelynn nor Daria to be worried about at this time.

I ended up bringing Adam to the hospital to see his sisters and meet up with Jenn-Jen this evening.  A group of ladies called the “Go Girl Ministry” provided a dinner for families of patients in the Special Care Nursery, so it was a nice opportunity to meet with other parents and share our experiences.  Adam enjoyed the picnic-style fried chicken dinner and also had an opportunity to say hello to his good friend Emily, the Child Life Specialist.  Last week I had mentioned there is a baby in the other side of our room that needed prayer, and we were happy to see his mother at the dinner.  She tells us that her son is doing quite a bit better since his last surgery, so praise God for helping this family through some difficult times.  By far, this baby is currently the longest-term resident of the NICU, and he still has a ways to go.  Still, I keep him in my prayers, as I hope he can go home before he celebrates his sixth month birthday.

Emily also mentioned there is a non-profit organization that offers free professional photography for children that are facing life-limiting issues that are keeping them in the hospital.  She asked if we might be interested in having a family portrait taken sometime as early as this upcoming Sunday, and we quickly told her that we would love to receive this blessing.  With Katelynn’s EDMD and both girls’ Broviac lines out, we are about as photo ready as can be.  Maybe Daria will build up her respiratory system and be off the nasal cannula by Sunday, and maybe I can pay a friendly visit to my hair stylist to clean up the mess on my head. 

Speaking of pictures… I know I am lame and have no excuses for not sharing any yet.  If you are still keeping up with my blog, I commend you for your patience and promise you that I will have pictures up by this weekend.  Thank you and please stay tuned. 

March 25, 2008 – Moving quickly

Things certainly are moving quickly for Katelynn and Daria.  It was only yesterday when they started feeding from the bottle, and today, Jenn-Jen was able to successfully breastfeed both of our daughters.  With the fast paced change, all of a sudden we are really feeling pressure to prepare ourselves for the day the girls get to come home.  This essentially means we need to finalize our purchase of a minivan and ready the twins’ room at home.  There just does not seem to be enough time in a given day to take care of the routine tasks, let alone these things that have seemingly become more urgent.  I know that Katelynn and Daria will not be discharged immediately, but time is passing faster than anticipated, so the last thing we want is to be forced to rush. 

Besides the news about breastfeeding, some of the events I expected to happen today actually did not take place.  Katleynn was scheduled for an electroencephalogram (EEG) today, but this was postponed because our pediatric neurosurgeon was planning to remove the external ventricular drainage system sometime today.  The removal is happening sooner than anticipated, but it will take away the tape that has been securing the tubing to Katelynn’s head and allow the EEG monitors to be placed properly during the test.  Both Katelynn and Daria had their Broviac lines removed early this morning, but Katelynn did not have a PIC line put in as we were told yesterday.  Jenn-Jen and I are thinking they may hold off on putting in this central line until it becomes a necessity, perhaps before a potential surgery.

My evening visit with the girls was very quiet and peaceful.  Our half of Room B seemed to have emptied out today, as there was only another set of twins next to the girls.  The extra space and quiet is a welcome change compared to the normal hustle of the NICU.  I will enjoy this as long as it lasts, but I have come to learn that the Special Care Nursery is always a place of transition.  Often, it feels more like an airport terminal rather than a place where babies grow and rest.  Speaking of growing, Katelynn weighed in tonight at 3 pounds 7 ounces, or 1550 grams, and Daria was at 3 pounds 3 ounces, or 1460 grams.  Seeing how well both of my girls are taking to the bottle and breast, I am happy to see them fattening up.  It is actually strange to use the word “fattening” when I am talking about weights that are roughly half of what you would expect to see with a full-term newborn.  I guess it really is all relative, but I just realized that Katelynn and Daria have already doubled their birth weights.  They sure have come a long way…

March 24, 2008 – Week 8 for our butterflies

Eight weeks ago today, Katelynn and Daria made their very early and unexpected entrance into the world.  So much has happened since January 28, and it surprises me that this will my seventieth post since the twins were born.  Counting the additional eight entries I logged in during Jenn-Jen’s stay in the high-risk maternity wing of the hospital, you are currently reading post number seventy nine.  Just reading through the journaling I did right after the girls were born makes me grateful that I decided to capture my thoughts, as photos and videos would never provide even a small glimpse of the experiences my family and I have been through.  Part of me is completely astonished to think that I have been able to keep this blog current for so long, but I also know that God has carried me through and renewed my strength and discipline to continue on.  I might venture to give a little bit of credit to the gallons of coffee I have consumed since Katelynn and Daria’s birth, but only so far is it has kept me from completely falling asleep at the keyboard.  If you have been keeping up and staying by our side through the reading of my daily entries, I thank you for your faithfulness and bringing us into your prayers and thoughts.

God does have a way of showing His presence.  In my life, I have found that He often reminds me that He is there through clear but subtle hints.  If you read back to my posts on February 8 and 14, you will find that the butterfly has become the symbol of Katelynn and Daria’s struggle to overcome the difficulties and complications associated with very premature birth.  As much as I have agonized over their battles, ranging from surgeries to brain hemorrhaging to multiple infections, God has used the butterfly to teach me that the girls will go through challenges before they blossom and grow their wings. 

Yesterday during Adam’s Easter egg hunt on the hospital lawn, a monarch butterfly happened to float by us.  At the time, it did not cross my mind that God was telling me to look to Him, but today’s events certainly made me pause and smile.  He is definitely near.

While I was busy working away during the afternoon, Jenn-Jen called me from the hospital and told me that I will probably want to kick myself for not being there with her.  Apparently, the neonatologist thought that Katleynn and Daria were ready to take bottle feedings.  Forget the middle ground of gevage feedings, they were going to do the real thing and watch to see how well the girls handle this milestone.  Indeed, I did kick myself fairly hard, but it was such joyful news to hear that both of the twins finished their twenty seven milliliters of milk quickly and even offered up their first burps without much fuss.  We parents of premature babies can attest to how much of an accomplishment this really is, as up to this point, Katelynn and Daria have been fed either through an IV line or a timed pumping through a nasal-gastric (NG) tube.  Jenn-Jen was there to watch the feedings and could not help but cry tears of joy as our babies sucked at the bottle nipples.  My wife summed it up best by saying that it is so moving to see our girls do “normal baby” things, like drinking from a bottle, after going through so much.  I just wish I could have been there.

As proud as I have been all day, you can imagine how antsy I have been feeling throughout today to see the girls.  When I came into the NICU, Katelynn and Daria’s nurse told me that she tried to nipple feed Katelynn but was not very successful.  Katelynn took in about six milliliters through the bottle before she had to receive the rest through her NG pump.  The nurse was going to give Daria a try now and asked if I wanted to do the feed.  How could I pass up such an opportunity?  After watching the nurse start off the feed, I took Daria in my arms and let her finish the second half of her meal.  It was such a satisfying feeling to feel and watch her suck as a newborn does, and I could not help but smile the moment I heard her burp for me.   We are looking forward to feeding our daughters in the days to come, but it will be a gradual process, since bottle feeding is actually very tiring for young preemies like Katleynn and Daria.  The nurses will probably do one or two bottle feeds a day to start, and progressively increase this as the twins show increased toleration and endurance.

Other than the feeding milestone, we learned that Katelynn and Daria’s Broviac lines will be removed sometime tonight.  In Daria’s case, they are not seeing much of a need for the central line anymore.  With Katelynn, the removal is more of a necessity, as they want to make sure the line does not have any remnants of the infection she recently battled.  Katelynn will, however, have a peripherally inserted central (PIC) catheter line (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter) put in her arm.  Given the issues she has been facing, the medical staff feel that a central line may still come in as a need.  So, sometime this early morning, the pediatric surgeon will come by and take out the Broviacs.

We did also hear from the neonatologist that Daria’s head circumference seems to have noticeably increased today, so he is ordering a head ultrasound to make sure there are no issues with her brain.  This news concerns us a little, but Daria’s fontanelle still seems to be nice and soft, so I hope this is just nothing more than a growth spurt. 

Well, once again, it is past midnight and I am sitting here alone in chair 4 outside the NICU waiting area.  For some reason, there seems to be more foot traffic tonight and I am missing the normal quiet I experience during my evening visits.  It has been great to see and hold both girls tonight, but I am going to run back in and say goodnight before driving home for the night.

March 23, 2008 – The first Easter

Putting aside all of the commercialization and cute festivities, Easter is truly a time of hope and renewal.  When we come back to the real root of the holiday, it marks the resurrection of Jesus and the reason why my faith stands where it does today.  To me, Easter provides the foundation to my belief system and is the ultimate reminder of the meaning of life.  So, before I offer a recap of today’s events, I thank the Lord that I can rejoice and share the miracle of Easter with you all.

As deep and as sacred Easter is, it is still a holiday filled with wonder and excitement for children of all ages.  After attending a very memorable church service, we made our way to the hospital to celebrate with Katelynn and Daria.  Adam was very excited to participate in an Easter egg coloring party and egg hunt put on by the Child Life Specialist group at Sutter Memorial.  My original plan was to drop him off to have fun with the other big brothers and sisters of NICU patients, but I decided to stay with my son during the whole event while Jenn-Jen and her father spent time with the girls.  It was definitely time well spent, as I watched my five year old have a blast dying eggs, coloring Easter handouts and running around on the front lawn of the hospital with a basketful of plastic eggs filled with various goodies.  Adam proudly declared that he had accumulated twenty-one eggs, and Miss Emily, his favorite Child Life Specialist, did originally say that each child should have twenty eggs if all are found.  So Adam decided to part with a purple egg and give it to a young toddler girl, but in return he loudly proclaimed, “Twenty-one minus one equals twenty!”  I did not know whether to be very proud or slightly embarrassed at my son’s very open display of his love of math. 

As quickly as my father-in-law came to visit, his time with us ended and he left for Southern California this evening.  I had mentioned yesterday it has been tiring to make sure that we are taking care of him while he is here, but it has been equally, if not more, rewarding to watch Adam bond with this grandfather since our last visit so long ago.  The weekend has come and gone, but a sense of routine is beginning to come back into the picture.  I did have enough remaining energy, despite what appears to be worsening allergies, to make my way to see Katelynn and Daria tonight.  The time alone with my daughters certainly provided a much-needed calming effect for me after going through such a tumultuous weekend.

Our day nurse had voiced some concerns about Katelynn’s fontanelle feeling a bit full, but this was not supported by any increase in her head circumference.  By the same token, my conversation with the night nurse seemed to indicate that Katelynn’s head was still feeling quite fine.  Jenn-Jen and I are watching this very closely this week, since Katelynn’s external ventricular drainage system is probably going to be either removed or replaced by the weekend.  We are still fervently praying that there will not be a need for anymore surgeries after this, and asking that Katelynn will not require the need for a permanent ventricular shunt.  Until that point comes, we do know that Katelynn will be undergoing her second electroencephalogram (EEG) on Tuesday to assess her brain activity associated with the horrible seizures she underwent a couple of weeks ago. 

During the day, Daria had been showing more frequent oxygen desaturations as well, but Jenn-Jen said that this may have been associated with a massive blowout of a diaper.  As adults, we do not really associate having our bowels so full that it affects our breathing, but this is common in the world of the premature infant.  Over time, this should improve, but Daria still seems to struggle a little with her compressed feedings.  The night nurse seemed to think that Daria’s pulse oximeter (http://www.google.com/search?hl=en&q=pulse+oximeter) was not accurately reading her oxygen saturation levels, so she moved the monitor to see if she could get a better read.  While I held Daria this evening, she did have one desat episode that required me to provide a little stimulation to stop her apnea.

The twins are now both over three pounds each!  Compared to full-term babies, they are still tiny, but each pound mark is a big deal to me.  Daria broke the threshold today and is weighing in at 3 pounds 1 ounce, or 1380 grams.  Katelynn is still keeping pace by leading at 3 pounds 4 ounces, or 1470 grams.  It is still amazing to think that put together, the girls weigh about as much as the bowling ball Adam uses.  Part of me is anxious to see the twins start packing on the baby fat, as Adam did when he came home after his stint in the NICU.  Of course, Adam is now a walking stick and in need of a little fat himself.

Well, it’s getting to be that time again where my drying eyes are reminding me that I still need to sleep instead of parking myself in front of the keyboard.  Work resumes tomorrow and Adam is on spring break.  I am thinking it might be busy around here, even without family coming in from out of town.  Goodnight and Happy Easter once again. 

March 22, 2008 – Exhausted

As I expected, today has been busy and exhausting.  With both Adam and my father-in-law in tow, the time spent visiting the girls was quite broken up and tiring.  Most of the day was spent between visiting Katelynn and Daria, and other short spurts of activity.  My father-in-law is an avid antiques collector and dealer, so it was perfect that the 57th Street Antique Mall was literally blocks away from the hospital.  I brought him there to do some hunting, while Jenn-Jen was promptly keeping on her pumping schedule.  The challenge was to keep Adam from either being bored or too interested in touching antiques not made to be handled by little hands.  I was grateful that we had some educational materials in the car and benches abound outside the different antique shops. 

It has really been a blessing that the girls have been so stable recently.  If this were not the case, today probably would have been spent entirely at the hospital and my father-in-law would have needed to just sit and wait.  Given how Katelynn and Daria are doing, it was nice to be able to enjoy having Jenn-Jen’s father in town and watch Adam spend some good quality time with grandpa.  We are less than five hundred miles away through a short direct flight, but it just never seems like there is enough time to visit or have him come up to see us.  As tiring as today has been, I am still grateful for family.

We capped off tonight with a nice family dinner at my father’s restaurant.  It is quite evident that the pollen count is at horrendous levels, just by seeing my nephew’s puffy eyes and how irritated he seemed.  Jenn-Jen and I are still having some throat pain, but the Loratadine seems to have helped get rid of the itchiness I had yesterday.  I am still watching myself carefully to make sure I do not have a cold disguised as allergies.  We just cannot afford to have either of our twins catch something contagious.

With the girls, today has once again, turned out to be another “boring” day.  Since I did not get to spend much time watching or holding the girls, I decided to phone into the NICU to get a status update.  The evening seems to have been just as boring, and the nurse is telling me that Katelynn seems to really enjoy the moments of social interaction during her assessments.  This really warms my heart, as Jenn-Jen and I have been so concerned about the long term impact from her intraventricular hemorrhage.  I pray to God everyday that He would just heal her brain and allow her to have a flourishing life without any disabilities.  Updates like the one I received just now give me hope, and I know that I just need to keep specifically praying for this to happen.

Easter is coming tomorrow, and our day is packed.  I am trying to remind myself to slow down and celebrate life, the life that my family and I enjoy, as well as the everlasting life promised and demonstrated by Jesus, our risen Lord.  To prepare myself for the all that is in store tomorrow, I am going to turn in at the early hour of ten o’clock tonight.  Goodnight and God bless.

My soul finds rest in God alone; my salvation comes from him.
He alone is my rock and my salvation; he is my fortress, I will never be shaken.

Psalm 62:1-2

March 21, 2008 – A Good Friday, but are seasonal allergies upon us?

Jenn-Jen and I both seem to have a little bit of a sore throat, so we are going to watch things carefully to see if it is only seasonal allergies so common here in Sacramento, the City of Trees.  The weather has been hovering in the upper sixties and lower seventies, perfect temperatures for anything that blooms and spreads pollen.  I hate to think that there’s a chance that one or both of us have caught a cold, but for good measure, I will start taking the supplements to boost my immune system once again.  Being sick keeps us out of the NICU and we must do all we can to avoid illness.

As for Katelynn and Daria, we are still enjoying our period of calm, healthy progress.  Daria’s increased compression with her feedings is causing more oxygen desaturations, which is expected, but she is doing well with recovering all by herself.  Our evening nurse will be watching this to see if there is any reflux that might be affecting Daria, but all is well otherwise.  Katelynn had her head ultrasound performed this afternoon, and we really do not anticipate any changes.  The removal of her external ventricular drainage system is still top of mind for us, but that procedure is not expected to happen until late next week.  Before that operation happens, Katelynn will be undergoing another electroencephalogram (EEG) on Tuesday to assess her brain activity as it relates to her seizure episodes.  The nurse did check the level of Phenobarbitol in Katelynn’s system yeterday, and all is looking well there.  If I have not said it recently, it is such a huge relief to see those seizures be a thing of the past.

Adam had the opportunity to visit his sisters today, and he made sure to request some time with Miss Emily, the Child Life Specialist who has become his friend at the hospital.  Emily was kind enough to work with Adam on a craft to make a bunny rabbit and extended an invitation to the Easter egg event on Sunday.  My father also came by to visit the girls and take Adam out for the an overnight stay at his house.  Both Katelynn and Daria were quite awake and animated during this visit, so that left everyone in good spirits. 

We picked up Jenn-Jen’s father at the airport this evening, and after a quick dinner, we brought him to see Katelynn and Daria for the very first time.  During the visit, the girls’ nurse gave Daria a nice bath and I helped clean the Broviac line site afterwards.  The twins were dozing off most of the evening, but we had a few moments where they were more alert.  I am sure we will have more wide-eyed opportunities tomorrow and Sunday between the twins and my father-in-law.   

As I am writing this post, my throat is becoming less sore and more itchy.  This is almost a sure sign of allergies for me, so I may wrap up tonight by making a trip downstairs to find my Loratadine.  I will gladly accept my non-contagious allergies if it means I am not banned from seeing my Katelynn and Daria.  Jenn-Jen has not been one to have issues with seasonal allergies, so we will have to see how she feels when she wakes up tomorrow.

March 20, 2008 – A busy weekend ahead

This upcoming weekend is shaping up to be a busy one for us.  The hospital’s Child Life Specialists are putting together a sibling event in the afternoon to color and hunt Easter eggs, so we are excited to have Adam participate.  What came as an unexpected surprise was that Jenn-Jen’s father called us this evening and said that he would be visiting for the weekend.  As hectic as our schedules have been, it has been difficult to plan and arrange my father-in-law’s trip up from Southern California.  Having him here will be a good thing for all of us, since we have not been together in some time.  Still, there is inevitably an added layer of stress involved because we will need to have Jenn-Jen’s father practically at our side at all times throughout the weekend.  All in all, I anticipate that it will be a touching moment for him to see his only granddaughters for the first time since they were born.

As for Katelynn and Daria, the words of our neonatologist sum it up best, “boring is good.”  All is going well for both of my girls, and it was nourishing to my soul to finally get to hold Katelynn since her last surgery.  The twins are still co-bedded, but this may not last too long, as the doctor is talking about removing Katelynn’s EDMD in a week or so.  Right now, the plan is to remove the device and continue monitoring Katelynn’s head circumference and the fullness of her fontanelle to make sure there is no significant hydrocephalus.  If the production of cerebrospinal fluid exceeds the absorption rate, we may start to see swelling and a ventricular shunt will need to be put in eventually.  As hopeful as I am that this will not be necessary, the harsh fact is that a shunt is usually needed in the end.  Until we receive more clarification, we will continue to enjoy having the twins together in one bed and make the most out of our time holding both girls.

The only other news today was an increased compression on the feedings for both of the twins.  Katelynn has progressed to a schedule of twenty seven milliliters over an hour, followed by two hours of rest and digestion.  Daria is at the rate expected for a newborn, twenty seven milliliters of breast milk in thirty minutes, with a two and a half hour break.  The increased compressions have been tolerated well so far by both girls, as they have not been experiencing frequent oxygen desasturations during feeding.  Both are stooling inconsistently though, so an occasional glycerine suppository is still needed to kick start the poopie diaper process.

Right now all is calm and we are experiencing a period of cautious optimism.  Boring is good in the NICU, but boring often does not stay for long.  At this point, I am praying for a busy, but boring weekend with Jenn-Jen’s father in town.

March 19, 2008 – The NICU is busy and short on space

The NICU at Sutter Memorial Hospital experienced quite an influx of new patients yesterday, and apparently, space is suddenly in demand.  There has been the possibility that Daria’s progressive improvement may neccesitate her to be relocated to Room C or D, which house the “intermediate” status babies.  As Jenn-Jen and I really dislike the idea of shuffling between two rooms again, we were offered the option of having the twins co-bedded today.  It has been weeks since Katelynn and Daria shared the same incubator, so we jumped at this opportunity to get the girls closer to each other once again.

This evening, I walked into the room to see my daughters bundled up snugly in their blankets facing each other.  Both were snoozing away, so I did not have the heart to wake them and decided to just watch over them as I have for so many nights now.  At nine o’clock, the girls’ nurse had to awaken Daria for her assessment, so I helped out with the diaper change and prepared to spend some time holding her.  For one reason or another, it just has not worked out these past couple of days for me to hold Katelynn.  Our nurse needed a consultation from another nurse up in Pediatrics to calibrate and make some adjustments to Katelynn’s external drainage and monitoring device (EDMD), so that essentially kept Katelynn temporarily off limits.  While I feel that Katelynn has not received as much time in my arms lately, I want to hold her knowing there is no doubt or hesitation in the mind of the nurse.  I am looking forward to holding both girls together, so hopefully I will have the chance to do so soon.

Speaking of Katelynn’s EDMD, there is talk between the pediatric neurosurgeon and our neonatologist that it may be coming close to the point where they may consider removing the apparatus.  If Katelynn can keep her intracranial pressure (ICP) in check, we may still be able to avoid having the permanent ventricular shunt put in.  I still cringe thinking about the need for Katelynn to have to undergo more surgery and recovery with a ventilator put in.  From what we hear, she will need to have a magnetic resonance imaging (http://en.wikipedia.org/wiki/Magnetic_resonance_imaging), or MRI, scan done before she is discharged from the hospital.  We are anxiously looking forward to seeing the detailed results of the scan, but were surprised to learn that Katelynn would need to be intubated for this procedure.  Unfortunately, it just seems that the ventilator has become a little too familiar, especially with Katelynn.

The feeding schedule has changed once again for both of the twins.  Katelynn is now on a compressed feed of twenty six milliliters over two hours, followed by a one hour break.  Daria is still taking twenty six milliliters, but the doctor has decided to compress it even more, so she is taking this amount over forty five minutes and resting for two hours and fifteen minutes before the next feeding.  In speaking with our night nurse, she is thinking that it may not be long before the girls will be introduced to nipple feedings.  They will probably start with a gavage feeding, which is basically a tube feeding similar to what the girls are experiencing now, except there would not be any involvement of a syringe pump to do a precise, timed feed.  Jenn-Jen and I remember the gavage back when Adam was first introduced to breast milk, and back then it was actually difficult for us to watch him being fed this way.  With everything the girls have experienced, a gavage will actually have the opposite effect, as it is a clear sign of progress towards nipple feeding.

It truly warmed my heart to see Katelynn and Daria doing so well today together in the same incubator bed.  With the twins facing each other in bed, I caught a moment where it almost seemed like Daria was actively studying Katelynn.  Thoughts go through my head about whether the two find comfort in being near each other.  Maybe it just provides me a sense of serenity to see them together, but I will gladly take that any day.

March 18, 2008 – Two months ago…

January 18, 2008 was exactly two months ago, but somehow, it feels like a year has passed.  It was the morning of that very day when I clearly remember Jenn-Jen telling me we should go to the hospital to see why she was having frequent contraction pains.  Little did we know what was in store for us, and here we are now, premature parents for the third time.  Most of what we learned from our experience with Adam’s premature birth at thirty two weeks gestation only provided us with limited preparation for what would come with Katelynn and Daria’s stay at the NICU.  I almost have to stop to take a breath to truly absorb what we have been through since Jenn-Jen’s hospital admission.

Today is also a special day in a different way.  Had Katelynn and Daria been born today, they would have reached their thirty two week gestational age.  This would have made them about the same as Adam when he was born about five years ago.  Jenn-Jen and I had hoped and prayed that she would be able to keep the girls in the womb until this point, as it is one of our true reference points in our personal journey into parenthood.  We desperately wished for Jenn-Jen to be able to remain pregnant longer, as it would have made a world of difference in terms of developmental issues surrounding prematurity, but we are still blessed to be where we are today.  Without a doubt, Adam has turned out to be such the joy and love of our lives, and we already feel the same towards Katelynn and Daria.

Today was very positive and encouraging for us.  Jenn-Jen was able to hold Katleynn for the first time in weeks, as the pediatric neurosurgeon gave his blessing for us to move Katelynn while her external drainage and monitoring device (EDMD) is not in use.  I was not as fortunate because Katelynn was a little cold during the evening, so the nurse thought it would not be such a great idea to take her out of her incubator bed.  Nonetheless, I did get to hold Daria and sit next to Katelynn during the night, so I really cannot complain. 

The twins’ neonatologist spoke with us separately in the morning and evening and was very positive regarding Katelynn’s progress.  He apparently came in during the day, thinking he would need to tap Katelynn’s cerebrospinal fluid (CSF), but was pleasantly surprised that the pressure level did not justify the draw.  The doctor is still a little wary of the level of protein in the fluid, which is a marker of inflammation and infection, so another laboratory culture of the CSF will be run to check the results.  The EDMD may be a useful tool in keeping Katelynn’s intracranial pressure in check, but it is still a potential entry point for infection.  Our neonatologist is thinking it may be best to remove the device in a week or so, if all goes well, and keep a close watch on Katelynn’s ICP going forward.  Should the pressure levels justify the placement of a ventricular shunt later on, then we will address that issue if it should come to that point.

As well as Daria has been doing, Jenn-Jen and I talked about how we are uncertain regarding any longer-term developmental issues our daughter may face.  It is easy to forget that Daria still has an intraventricular hemorrhage (IVH) bordering between grade 2 and 3, and this may have an effect on her later on as she grows.  Of course, we remain hopeful and pray everyday that all will be fine with both girls.  I just need to remember that we are still in a marathon as it relates to both of the twins.

With the good news today and an excellent quiet time with the Lord this evening, I am feeling much stronger.  Thank you all for your prayers, as I really sensed God’s comfort amidst my difficulties the last couple of days.  I am sure I have not seen the last of my troubles, but it is encouraging to know I have your support equally through the storms and periods of calm.  Now it is time for rest and preparation for what may come tomorrow.

March 17, 2008 – The unseen battle

Today has been extremely taxing for me, from an emotional and spiritual level.  All is well with Jenn-Jen, Adam, Katelynn and Daria, but I have not really felt at ease beginning yesterday afternoon through this evening.  I am not sure if words can really explain it, and it took a deep heart to heart conversation with Jenn-Jen to reach a point where I could even come near to uncovering what was affecting me.  

To some, it may simply be a small mood swing, or the effects of the prolonged strain of having the twins in the NICU, but I believe there has been a definite spiritual disturbance within me taking root.  I was not so sure yesterday even as I was writing my last post, but yesterday afternoon, I noticed I was very agitated and impatient, especially with Adam.  I left the house for the hospital in the evening, thinking all would be fine and came home too tired to capture my thoughts for the day.  Today was different, but not better.  I spent the day working, but feeling unproductive, alone and restless.  Out of the blue, I remembered I had listened to a song called “Everything” by Lifehouse recently on the radio and the DJ talked about a related video clip on YouTube and GodTube that was worth watching.  I found a live performance (http://www.youtube.com/watch?v=cyheJ480LYA) and a video rendition (http://www.godtube.com/view_video.php?viewkey=d14827b8c55d8411d821) quickly online, and the first clip brought me to uncontrollable tears.

The skit depicts a young woman who has found joy and peace in Christ, but is soon dragged away by sin and temptation.  During her struggles with her various afflictions, the Lord stands close by reaching for her to come back to Him.  As she reaches the end of her ability to carry on any longer, she quivers, holding a gun to her head.  In her last moment of desperation, the woman throws away the gun and attempts to rush back to her Lord.  The demons that have held her for so long are not willing to let her go without a fight, so there is an intense and dramatic struggle before Christ steps in and shields the blows and beatings from the collective sin that has kept the woman chained and burdened.  Victory comes in full force suddenly as the Lord overcomes all of the pain dealt by the woman’s demons and the love and peace between the woman and Jesus are restored in full glory.

For those of you that know me well enough, it should come as no surprise that these videos had a tremendous emotional impact on me.  Like the woman, I feel that I have been battling my own demons, and most are related to guilt and feelings of not being “good enough.”  I have good days and bad, but none as rough as the one yesterday.  Watching the clips made me realize that there is a real enemy within each of us that chips away at our weaknesses, and within those cracks, the slow-acting poisons of self-doubt, regret and blame are planted. In my situation, I had been going on with my days, oblivious to the fact that I was being sapped spiritually.  The videos, especially the live version, were like the jolt of a defibrillator bringing me back to life.

It was a impeccable timing that I had this moment shortly before Jenn-Jen came home with Adam.  She noticed the undeniable signs of recent crying on my face and that was how we began our talk.  I still fight with feelings of inadequacy when it seems I am stretched so many different ways, but until this afternoon, I was not even aware of how to explain this, even to my own wife.  This is something we will be praying over together, as I know deep inside I am trying to do the best I can to not only be a good husband and father, but also to be as faultless as possible as a son, brother, friend, neighbor and employee.  Where I need help is defining that line of being “good enough.”  Maybe I am setting unreachable expectations given the constraint of my time and limited energy, but I can say that with God’s strength, I will fight to not allow these demons to bind me any longer with guilt and shame. 

Please keep sending the prayers this way and let me know if I can do the same.  As Easter is approaching in six days, the unseen spiritual battle the wages within each of us is the perfect reminder that there is an remedy to the pain we suffer.  God provided me with the path to everlasting life, free from sin and suffering, and He is asking all of us to allow Him into our hearts.  If it were not for my Jesus, I know for a fact I would not be sitting here once again in chair 4 with hope and peace in my heart.  I encourage you to let me know if God has been tugging at you to come back to Him, much like what was depicted in the video clips.

Now that I have spent most of my efforts spilling out my spiritual struggles, I still want to provide an update with Katelynn and Daria’s status.  The head ultrasound and spinal fluid lab results for Katelynn are back, and I am very relieved to say that the infection is well on its way out.  The pediatric neurosurgeon would like to keep Katelynn on her external drainage and monitoring device (EDMD) until there is a certainty that the infection is gone.  Katleynn’s white blood count, which fight infection, remains high, while the level of sugar in the fluid is low.  Her doctor believes that a simple freezing of her next fluid culture will help determine if this low sugar level is due to the fact that the white blood cells are using the sugar as energy to fight their good fight.  Otherwise, Katelynn is doing well with her feedings now at 8.5 milliliters an hour and her weight at 2 pounds 15 ounces, or 1340 grams.

Daria is beginning to look more chubby like her sister, and we are happy that her recent head ultrasound shows her intraventricular hemorrhaging (IVH) to be resolving.  This essentially means that the bleeding has ceased and is not progressing to the dreaded grade 4.  I will take this as a victory, but as always, I must remain cautious until I get a definitive all clear from all sources.  Our Daria is still taking a compressed feeding of 26 milliliters over an hour, with two hours to digest.  She remains 100 grams lighter than Katelynn at 1240 grams, or 2 pounds 12 ounces.  It is amazing to think the girls are approaching the 3 pound mark, which is tiny compared to full-term babies, but the difference in their appearance is remarkable.

As all is well here at Sutter Memorial Hospital, I shall call it a night and drive home to a comfortable bed.  What amounted to be two days of internal frustration and emotion has been transformed into God’s glory and strength.  I will end this post with some of the lyrics from the Lifehouse song mentioned earlier, as well as a very applicable Bible verse.

Find Me Here
Speak To Me
I want to feel you
I need to hear you
You are the light
That’s leading me
To the place where I find peace again.

You are the strength, that keeps me walking.
You are the hope, that keeps me trusting.
You are the light to my soul.
You are my purpose…you’re everything.

How can I stand here with you and not be moved by you?
Would you tell me how could it be any better than this?

Finally, be strong in the Lord and in his mighty power.  Put on the full armor of God so that you can take your stand against the devil’s schemes.  For our struggle is not against flesh and blood, but against the rules, against the authorities, against powers of this dark world and against the spiritual forces of evil in the heavenly realms.  Therefore put on the full armor of God, so that when the day comes, you may be able to stand your ground, and after you have done everything, to stand.  Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace.  In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.  Take the helmet of salvation and the sword of the Spirit, which is the word of God.  And pray in the Spirit on all occasions with all kinds of prayers and requests.  With this in mind, be alert and always keep on praying for all the saints.

Ephesians 6:10-18 New International Version

March 16, 2008 – Prayer for another family

Jenn-Jen and I recently spoke with another mother of a very premature baby on the other side of the room and realized how difficult it can be to be in the NICU.  The baby was born even earlier than our twins, but has been battling through series after series of problems related to his prematurity.  Unfortunately, his afflictions are so severe that his survival is still in question today, almost four months since his birth.  My heart goes out to this family, as they have gone through so many challenges in preparing for the possible loss of their baby.  Hearing the stories of everything that has happened in this situation is teaching me a lesson to not focus on the negative, but stay hopeful and be grateful for what we are given.  I ask that you join me in praying for this baby boy, just as you have been so faithful in doing so with Katelynn and Daria.

The girls remain on a steady path of improvement and I am still so amazed at the changes that seem to appear overnight.  Katelynn’s gain in weight is beginning to show more in her appearance, and the nurses have decided to start putting her into clothes.  Without any the tubing associated with oxygen support attached, Katelynn’s face definitely looks to be fuller and rounder.  Jenn-Jen and I will look to put up a few photos on the blog here shortly, I promise. 

Daria is also looking bigger too, but she seems to steadily trail her sister in weight by roughly three ounces consistently.  Her feedings have been compressed even more as of today, to twenty six milliliters of breast milk over an hour, with a two hour break.  This increase surprised us and makes us a little nervous if it will increase her desaturations, as they decided to increase the volume and shorten the feeding time simultaneously.

We brought in Adam to see his sisters today after our church’s Easter Egg Hunt, and as much as we want him to be there, the reality remains that our son is still a five year old.  Along with his age comes a short attention span, and I made a special effort to take him to the library to pick out a few books so he could bring them along into the NICU.  The visit lasted no more than fifteen minutes before Adam was ready to leave, so the next time I may want to get him even more involved by having him read his sisters a story.  I just have to remind myself not to set too high of an expectation when it comes to these visits with Adam, as it is not fair to assume that he wants to spend long periods of time in such a setting.

I did come back in the evening by myself and learned that the on call neonatologist gave the nurses permission to co-bed Katelynn and Daria.  Despite this order, the charge nurse did not agree that it was such a good idea, mainly because of the possibility that Katelynn’s tubing to her ventricles might be pulled by Daria.  As much as I would love to see them together again, it is for the best that we hold off until there is no risk of this problem.  It is still very difficult to not be able to hold Katelynn, and I try not to feel like I am neglecting her when I do have my time with Daria in my arms.  I know it is almost silly to think this, with the girls being so young right now, but there is so much benefit in the skin-to-skin contact with babies.  We pray that Katelynn will soon progress past the need to have this external drainage and monitoring device so we will be able to hold her soon.

March 15, 2008 – Getting things done

There is only so much time in a given day to spread across all the things that need to be done.  Since Katelynn and Daria’s birth, time at the hospital has almost always taken precedence over anything else.  Especially during the first few weeks after they entered this world, Jenn-Jen and I sought to spend every possible moment with the girls with the thought that it may be last chance we would have with them.  It felt that we were living day to day with one potentially life-threatening issue after another, and it seemed that we could never rest feeling assured the girls would no longer face the question of survival.  I do try to remind myself that each day that passes means my angels have another victory in their fights for their lives.  The twins still have much ahead before our lives can be classified as anything remotely normal by ordinary standards, but Jenn-Jen and I are trying to bring ourselves back to normalcy whenever we see Katelynn and Daria experiencing good days.

Today was one of those times when we have been coasting on the ideal “no news is good news” mentality.  As the girls have been free of any major issues for a few days now, Jenn-Jen and I realized that there really is life outside of the NICU, and along with that comes other responsibilities needing our attention.  Instead of going to the hospital at the first available moment, we decided to do a little housekeeping that is, much to our embarrassment, well past due.  It really is amazing how much time and energy it takes to keep a house well-maintained, even outside of times of crisis.  Even so, taking care of some of the household tasks we have wanted to do for sometime now made me feel a little more “human” again.  Once again, there was that familiar sense of satisfaction in completing a task I aspired to finish days, if not weeks ago.  The problem is, if either Katelynn or Daria was experiencing any issues, these tasks would stop right in their tracks to make way for time at the hospital. 

I am very happy to say that there were no real issues with either of our twins today.  In fact, Katelynn’s sutures were looking quite improved today, so she is definitely replenishing the cerebrospinal fluid that had been draining out recently.  Additionally, the reduction of her Phenobarbitol dosage has seemed to work without any relapse into seizures.  Both girls had to undergo the uncomfortable eye examination this morning, but appeared fine by the time Jenn-Jen and I arrived in the afternoon.  By the time we decided to finish up with our visit, a technician came in with the portable ultrasound machine to scan Katelynn’s head.  Now we eagerly anticipate speaking to our primary neonatologist when he is back on Monday.

Due to our strenuous day taking care of the house and moving bedroom furniture up and down the stairs, I decided to pass on making an evening visit to the NICU.  While it is only 10:25 PM right now, I am struggling to keep my eyes open here at the computer.  In the more distant past, I have been known to fall asleep at the keyboard, only to wake up with a monitor screen full of gibberish.  As silly as that may be, I am grateful I am only sitting behind my computer and not my car.  I suppose that is my cue to catch up on my sleep and provide a more thorough update tomorrow.  Goodnight dear friends and family.

March 14, 2008 – A real example of grade 4 IVH

After finishing up my post last night, I decided to step back into Room B of the Special Care Nursery to say goodnight to Katelynn and Daria.  I just happened to return right as a technician entered with her portable ultrasound machine to conduct Daria’s brain echo.  The ultrasound technicians typically do not share much information during the procedure, and I have come to expect a detailed explanation of the results only from our primary neonatologist.  This essentially means we will probably not know much more until Monday, when the girls’ doctor returns.  Nonetheless, given Daria’s stable head circumference measurements each day and her healthy overall appearance, I feel comfortable in being patient.  We really do not expect her IVH to have worsened at this stage, but a small part of me always feels a little cautious, almost as if to protect myself from any horrible surprises.  Sometimes I wish Jenn-Jen and I could simply go through our days without thinking if there could be a turn for the worst with either Katelynn or Daria, but the last time we felt that way was abruptly shattered by the terrible news regarding Katelynn’s recent cerebrospinal fluid infection and subsequent surgery.  Since then, I try my best to remain hopeful, but remind myself daily to prepare for the continuing emotional battle.  The harsh reality sets in when I remember that the twins are still in the intensive care unit.

Despite my self-imposed need to remain cautious, Jenn-Jen and I are still working on spending quality time together to build upon our marriage.  With Adam staying overnight at my parents’ tonight, I wanted to take Jenn-Jen out to dinner at a tiny, but well received French cafe just a few blocks away from the hospital.  Cafe Rolle is literally a two-man operation, and the reviews (http://www.yelp.com/biz/cafe-rolle-sacramento) were quite accurate in terms of the quality of the food and the ambiance of the restaurant.  Jenn-Jen and I enjoy trying small, local restaurants like this whenever we have the chance, but all the major changes in our lives often makes it challenging to have a nice dinner together.  The food was quite delicious, but what was even better was to just to have the opportunity to sit and talk without distraction.

As Jenn-Jen and I were looking at the various French postcards placed beneath our glass tabletop, I shared a thought that has been going through my mind recently.  A few days ago, one of the nurses taking care of the twins opened up and told me that she has a brother who, at a young age, experienced a grade 4 IVH and subsequent seizures.  While he is a grown adult now and the seizures are limited to roughly one event annually, the brother did experience difficulty with his learning skills.  In her words, he has the mental capacity of an eight or nine year old in the body of an individual in his twenties.  Still, he enjoys life thoroughly and is quite active socially through various educational programs. 

Hearing this story made me think about Katelynn and how she may face a similar path.  As much as I wish for her to experience normal mental development, the reality is that we do not know what will happen.  I shared with Jenn-Jen that it is certainly possible for Katelynn to grow up with us and never leave home as most of us do when we reach adulthood.  In all honesty, I am fully prepared to accept this as our future, if God wills for it to be.  Yet, what strikes fear into my heart is what may happen when Jenn-Jen and I become older and less able to provide the full support that may be needed in such a situation.  My hope is that Adam and Daria will extend the love we strive to teach them daily and care for their sister the best they possibly can.  Of course, I continually pray that God would spare Katelynn from such a future, but I would find tremendous peace in knowing each of my children are able to find joy in living life to its fullest potential.  It will still be a long while before we know the status of Katelynn’s full mental development, but I ask you to join me in prayer each day that she will be free of any affliction.

With the girls’ progress, all is going well today.  Daria is still working hard to catch up with her sister’s weight, and the doctor has increased her feedings of breast milk to 24 milliliters over a 90-minute span, followed by another 90-minute break.  She has been tolerating the increased compressed feedings well, with only minor oxygen desaturations caused by the pressure of a full stomach.  Diapers often do not stay unsoiled long with our baby girl, but Jenn-Jen and I did have the opportunity to wash her this evening.  I won’t really go as far as calling it a bath, as the whole affair was done in her incubator bed under the heater and we used wipes dipped in very warm water.  With the supervision of her nurse, Jenn-Jen did manage the amazing feat of shampooing and rinsing her hair.  After the wash, I spent some time holding Daria with skin-to-skin contact until the night shift change.

Katelynn is also doing remarkably well and has been seizure-free for a couple of days now.  Her Phenobarbitol dosage has halved to 5 milligrams twice daily, and a measurement of the residual medication in her system will be conducted early in the morning.  Phenobarbitol is fantastic in keeping seizures at bay, but it also has a slowing effect on the patient, so it is not necessarily the best choice for the longer term beyond the NICU.  Checking the level will help determine the proper dosage going forward.  The doctor has also ordered the drainage of Katelynn’s CSF to stop temporarily, as it appears to too much fluid is being taken out.  We are seeing an overlapping of the sutures in Katelynn’s skull between her frontal, parietal and occipital bones, which may be a result of too little CSF.  Illustrations of the sutures joining the different bones in the skull can be found here (http://en.wikipedia.org/wiki/Image:Gray188.png).  So, the main goal in stopping drainage will be to allow Katleynn to produce additional CSF so her brain may grow and keep the the overlap at a minimum.  

As an unexpected result of the temporary halt in use of the external drainage and monitoring device (EDMD), we may have the opportunity to hold Katelynn again.  Jenn-Jen and I have not been able to put her in our arms since the last surgery and it almost seems cruel and unfair to Katelynn.  The EDMD’s functionality works by using the height of the device to assist in the measurement of her intracranial pressure, so holding her has been off limits until the device is replaced.  Every time I think about the necessity to put our daughter through another surgery still pains me, but our hope is that the physicians are working diligently on the goal of giving Katelynn the best course of treatment toward a life with minimal long-term issues.

Deep inside I know that we need to take things one day at a time and not spend needless energy worrying about tomorrow.  There is no doubt this is much easier said than done. 

March 13, 2008 – Peace for now, but unease about the unknown

Once again, I am here in chair 4 outside the NICU during my favorite time to visit.  This area is usually teeming with family and friends of Katelynn and Daria’s fellow NICU patients, so it is difficult to find peace here during the day.  At night, the scene changes completely, as the well wishers are most likely winding down their evenings in the comfort of their own homes.  It is during this place and time when I feel I can organize my thoughts best.  I find it can be challenging to journal at home at night, as there are either too many distractions or too many comfortable spots around the house to keep me coherent and conscious enough to capture my thoughts properly.

This morning, I had the opportunity to speak with the neurologist who is working with Katleynn after she started experiencing seizures.  I quickly learned that there are really no definitive answers when it comes to seizures with premature babies.  He explained that Katelynn’s episodes may be a result of her extreme prematurity, her brain hemorrhage, the bacterial infection in her cerebrospinal fluid (CSF), the intracranial pressure (ICP) in her head, or any combination of these factors.  What is still puzzling is why her EEG results show seizure activity, but not during the times when she is exhibiting signs she is undergoing one.  It still astonishes me how much is unknown in the field of medicine, and when it affects a loved one, these unknowns only make me more and more uneasy.

Katelynn is still doing well under the circumstances.  We are not seeing either seizure activity, which is owed to the Phenobarbitol properly working in her system.  Amazingly enough, she is off her nasal cannula once again and breathing completely on her own, unaided.  Katelynn’s respiratory system has always been strong, especially in light what she needs, considering what she has gone through.  As CSF is coming out through her external drainage and monitoring system (EDMS),  the neonatologist decided that it would be best to replace her fluid loss with simple intravenous saline right away instead of waiting for her to have drained out ten milliliters of fluid first.  Up until today, the plan was to wait for an accumulated loss of fluid, but Katleynn’s fontanelle looked sunken in enough to warrant immediate replacement. 

 As Katelynn has been off her intravenous TPN and lipids since yesterday, the doctor has increased her feedings to eight milliliters of breast milk each hour continuously.  It really does make a difference whenever I see things removed, as it almost make me feel that my girls are becoming more independent and stronger.  I also learned that a sample of her CSF has been sent to the laboratory for a culture to see where we stand with the bacterial infection.  As I understand it, one of the measurements taken during a complete blood count (CBC) test is used to determine the amount of C-reactive protein (CRP) present.  The CRP levels are a marker for inflammation, which is a symptom of infection.  Katelynn’s CRP measurements are showing a significant decrease, much to our relief.

Daria is doing very well, which has been standard for her as of late.  She is due for a head ultrasound in the next day or two, so we are anxious to see how her grade 2, borderline grade 3, intraventricular hemorrhage has resolved.  Since Daria’s head circumference has not grown dramatically as it did with Katelynn, all seems very positive.  Of course, I will feel much better once the ultrasound is complete and the results are in.

My evening visit was nice and quiet, as I had a chance to hold Daria while watching Katelynn.  I am beginning to see visible signs of weight gain on Daria, but she is still so small compared to many of the other babies in the NICU.  There’s also marked improvement in her sucking reflex, which in itself is a comforting sight to see.  Despite all of this good news, there does not seem to be any indication that she will have her nasal cannula removed anytime soon.  It would be nice to see more of her beautiful face.

Well, the shift change has wrapped up and I am seeing nurses come and go through the stairwell.  I will go back in and spend a little more time with the girls before heading back home to my warm bed.  With how stressful it has been lately, I am a little surprised I have lasted this long tonight without a cup of coffee.  I am sure tomorrow morning will be another story.  For now, goodnight from chair 4.

March 12, 2008 – Increased ICP?

I am not sure if it is an internal coping mechanism that applies to each of us, but during a brief conversation with Jenn-Jen this afternoon, we realized how Katelynn’s recent seizure activity has affected us in similar ways.  When we started seeing the two different types of seizures manifest and increase in frequency, all we wanted was for them to cease.  Watching Katelynn convulse and drop her heart rate was nothing short of agonizing torture for us, so it really seemed like an eternity before the EEG was completed and the Phenobarbitol was prescribed.  Once Katelynn settled into a drug-induced state of rest, both Jenn-Jen and I felt completely worn out, but we finally experienced a long overdue sense of peace.  As the medication was keeping Katelynn seizure-free, we began to long for her to show signs of alertness and activity similar to how she was before the last operation.  All of a sudden, continuous sleeping on Katelynn’s part was no longer good enough anymore.  Even though the seizures have become fewer and far between, Jenn-Jen and I really wanted to see our old Katelynn again.

I suppose what we have been going through exemplifies the lesson we still need to master.  Situations do change at a moment’s notice and every time we receive bad news, we pray for the best end result.  However, when the news is promising, it seems as if we only spend a short amount of time rejoicing and then we immediately set our sights on the next goal.  I know this is what we would call human nature, but I feel led to spend some time in prayer to thank the Lord for allowing us to experience both the good and the bad.  Through the toil and exhaustion of the difficult times, I have made it my daily prayer to stop leaning on my own limited understanding and put more of my faith in the unseen, but omnipotent hands of God.  Oh, how easy it is for me to say this when all is well.  The real test of my faith and resolve comes when I am dealt my next trial.

Nonetheless, I am happy to report that both girls had a relatively peaceful and uneventful day and evening.  Katelynn did experience three short seizure-like episodes in the middle of the night, but the doctor’s orders since then have changed so our daughter is now receiving two increased doses of Phenobarbitol (ten milligrams each) daily, and Ativan, only as needed.  This increase in Phenobarbitol is quite significant, as Katelynn was previously only receiving six milliliters over the course of twenty four hours.  During my evening visit, the nurse informed me that Katelynn has not had any seizures since the early morning episodes, which was very welcome news indeed. 

I was hoping to speak to the girls’ neonatologist tonight, as he has been gone for over a week preparing for and taking board examinations to keep his medical licensing current.  Unfortunately, the doctor was called away to attend to a couple new high-risk births and I did not see him at all during the hours I was in the NICU.  The nurse did share that it appears the elevated intracranial pressure (http://en.wikipedia.org/wiki/Intracranial_pressure), or ICP, may be the cause of the seizures, but I am waiting to hear it directly from the neonatologist to confirm this assessment.  Katelynn still has her ICP level monitored continuously, so it will be interesting to see if there is a correlation. 

An old high-school friend of mine, who is also an emergency room physician, sent me an e-mail tonight and shared that his nephew went through seizures and other neurological issues when his ventricular shunt malfunctioned and his ICP significantly increased.  After a series of assessments from various specialists, the neurologist removed the shunt and the problems resolved.  The most difficult part of this was that the usual indications for increased ICP were not detected initially.  Even so, hearing this story actually provides me with a good dose of hope that Katelynn’s seizures may not end up being a chronic issue.  Please pray with me that this may be the case, as the disturbing images of her seizures still deeply haunt me.

I know I have not mentioned this in some time, but I wanted to express my thanks and gratitude once again to all of you for your support and encouragement.  If you feel so inclined to post a comment or send me an e-mail, I can assure you that I read through each and every one.  It may take me some time to respond to you directly, but I will make every effort to do so, whether I end up posting a comment in response or replying by e-mail.  Just know that Jenn-Jen and I sincerely appreciate the fact that you are simply following us along our difficult journey and keeping us in your prayers.  Goodnight and God bless you and your families.

March 11, 2008 – The suffering subsides

I am learning more each day that science and medicine often cannot explain the intricacies associated with the our mind and body.  As Jenn-Jen and I seek answers to what Katelynn has been going through, the specialists from neonatology and neurology seem to only be able to offer best guesses instead of definitive conclusions.  While I have been calling Katelynn’s short tightening episodes seizures, the medical staff is reluctant to rule out the possibility this may be intense periodic pain.  Either explanation does not offer me any comfort, as my observations simply tell me that my daughter is suffering significantly.  While it was a relief to see Katelynn not going through any more of the more severe seizures last night, I was still very concerned over what I witnessed last night. 

Jenn-Jen stayed at the hospital through the day, as she normally does, and I had hoped the telephone silence up until 1:00 PM signified Katelynn’s seizures had ended.  When my wife did call, her tone of voice was tired and defeated.  Although they were occurring less often, the tightening episodes were still manifesting throughout the day.  We did not get to talk long on the phone when Jenn-Jen told me she had to hang up.  I thought she may need some time to think or be alone, so I decided not to ask if she would be calling back soon.

After Jenn-Jen came home with Adam, I received a short debrief of the afternoon’s events.  Our previous call ended, not because of the reasons I assumed, but the same nurse that had been so supportive yesterday had been passing by when she noticed Jenn-Jen was upset.  She ended up bringing my wife into the nurse director’s office to make sure everything was being taken care of properly.  The director decided to bring in the neonatologist on duty and a conversation regarding Katelynn’s ongoing seizure-like activity ensued.  I am glad this dialogue took place, as it resulted in a call to the nuerologist and new orders for our daughter’s care.  Katelynn was to receive another dose of Phenobarbitol to see if this would reduce the tightening episodes, as well as Ativan (http://www.medicinenet.com/lorazepam/article.htm) as a sedative.  Ativan actually can be used to treat acute seizures as well, so the medicine may have a dual purpose in treating Katelynn.  Acetominophen was also prescribed, but the nurse wanted to see if the other two drugs would work before introducing this.

As Jenn-Jen reported, the results were immediate and effective.  Katelynn was no longer agitated and all seizure-like activity ceased.  During my evening visit, I did not witness any of the disturbing episodes the four hours I stayed by the girls.  With other babies moving in and out of Room B, the nurses actually decided to move Daria’s incubator bed right next to Katelynn’s so I was able to sit in a glider chair holding Daria tonight while watching Katelynn two feet away.  I cannot emphasize how relieved I was to have a prolonged period of time seeing both of my girls sleeping so comfortably.  Throughout this recent ordeal, Jenn-Jen and I have both felt hesitant to hold Daria as Katelynn was going through her suffering.  Even though I decided to hold Daria last night, tonight’s visit was so much more settling for me and I could almost sense that Daria could tell I was not as tense as the night before.

As both of my angels are doing well tonight, I feel that I can go to sleep without feeling the anxiety that has been gripping me.  Today, I spent most of my work day agonizing over what Katelynn was undergoing, as well the effect it would have on Jenn-Jen.  Nonetheless, I can say that the emotional toll during the day has been completely removed by the relief after the doctors moved forward with the doses of Phenobarbitol and Ativan.  Witnessing Katelynn’s suffering subside and seeing her beautiful face resting in comfort is an overdue and welcome reprieve. 

While I was praying in the chapel on the seventh floor, I came across a devotional pamphlet offered free by the spiritual counseling staff.  Entitled “Making Sense Out of Suffering,” I felt inclined to take a copy and read through it during my quiet time with the Lord.  One quote within the devotional left a very strong impression within me:

The same everlasting Father who cares for you today will take care of you tomorrow and every day.  Either he will shield you from suffering, or he will give you unfailing strength to bear it.  Be at peace then and put aside all anxious thoughts and imaginations.

- Saint Francis de Sales

As frustrating and draining the last few days have been, I do feel renewed in firmly knowing that I have been both protected from suffering and made stronger to be able to conquer pain and anguish.  Tonight I offer my thanks to my Lord for carrying me through the ongoing trials and I specifically pray for the medical staff at the hospital to receive the wisdom and guidance that God, the ultimate healer, can provide in their plan of care for my little angels. 

March 10, 2008 – I am losing my faith in the system

Days like today are better off a part of the past.  I left the NICU late last night wondering if Katelynn would have a rough night filled with seizure-like episodes.  After arriving at home, it was no easy task to fall sleep despite how mentally exhausted I felt.  I arose with a sense of urgency and worry, so I decided to call the hospital to find out the latest development with Katelynn. 

The nurse informed me that the on-call neonatologist, who was different than the one working last night, observed Katelynn and wanted to order an electroencephalogram (http://www.webmd.com/epilepsy/electroencephalogram-eeg-21508), or EEG.  The test would check for abnormal electrical activity in the brain indicative of seizure activity.  We were informed the EEG would be administered around 10:30 AM, so Jenn-Jen quickly made her way to the NICU while I continued on with my work day.

I received a call from my wife around 11:30 AM and the EEG still had not been run.  The pain and frustration in her voice began to chisel away at my emotional foundation, and I began to experience a deepening sadness I have not felt in some time.  Jenn-Jen reported that Katelynn’s seizure-like episodes were increasing in frequency and were showing up roughly three to four times an hour consistently now.  The helplessness of the situation was maddening and, sitting alone in my office, I began to replay the details of last night’s visit in my mind.

The nurse from last night and I both felt Katelynn’s episodes were serious enough to warrant an observation from the doctor on call, yet we wanted to have faith in the his judgement and the procedural protocol in our daughter’s care plan.  Nonetheless, it just did not sit well within my spirit when I heard the doctor tell the nurse over the phone that Katelynn may just be experiencing apnea, and she should have an increased dose of caffeine.  I have seen enough bradycardia episodes to tell you the assessment of apnea was not correct, but still, I am no medical professional and I had to simply place my trust in the doctor.  Why I did not insist that he physically come to the NICU to see Katelynn is regrettably a mistake I do not intend to repeat.  I spent most of today beating myself up thinking what if the neonatologist had come in and listened to the nurse and me plead for an EEG to be ordered.  Would that have saved Katelynn from unnecessary suffering as she had to endure additional hours of what we have come to accept as seizures?  If the doctor had made the effort to see me in the NICU, if only to tell me that he would need to wait to make any changes, but would do his best to stay close and informed to Katelynn’s condition, it would have made me feel so much better.  Looking back, I simply felt dismissed and disregarded.

When the EEG was finally completed and the results sent to the neurologist on duty, the news we received back was somewhat inconclusive.  Apparently, the test was run in conjunction with a video recording of Katelynn’s behavior, as well as the use of photo stimulation to see if it would induce a seizure.  While the results indicate our daughter’s brain activity had signs of seizures, they did not seem to occur simultaneously with the the physical manifestations I witnessed bedside yesterday.  Nonetheless, because there was evidence of seizures, the neurologist ordered a heavier loading dose of the anti-seizure drug, Phenobarbitol (http://en.wikipedia.org/wiki/Phenobarbital), be given to Katelynn. 

By the time the drug was prescribed and administered, I had arrived at the hospital but was unable to see the immediate effects.  Jenn-Jen came out to meet me and looked completely exhausted.  She informed me that the Phenobarbitol had quite an immediate effect, as Katelynn was now resting comfortably without the chronic twitching and frequent seizures that had been keeping her agitated for the last couple of days.  Finally, we were able to feel some comfort in knowing our angel is not suffering.  Still, the comfort I felt was slowly being sapped away by the frustration I just would not allow myself to let go.

At Katelynn’s side, I complained to our nurse, as well as another experienced nurse who had been very helpful to Jenn-Jen during the day.  This second nurse actually called for a Chaplain to come in and provide spiritual support, as my wife was visibly distraught throughout the day.  Unfortunately, speaking the Chaplain was not what Jenn-Jen needed, but the thoughtfulness of the nurse was still appreciated.  This same nurse, in hearing my frustrations, offered to us speak with the nursing manager of the Special Care Nursery.  We agreed, if only to have our voices be heard.  As Katelynn was able to sleep uninterrupted, it allowed us to feel safe leaving her to share our feelings and thoughts with the manager.  For the next thirty minutes, we walked through all that had happened with Katelynn’s worsening condition since Sunday.  The manager agreed to be our advocate in sharing how the situation was handled had caused us to lose faith in the hospital system, and would do whatever she can to help us regain trust.  We left her office feeling heard, but my skepticism remains.

At this point, Katelynn will be receiving Phenobarbitol on a daily basis in decreasing dosages to see what effect it will have in combating her seizures.  From the day we learned about her grade 4 IVH, we knew this would be a possible long-term outcome for our baby.  Still, the sudden onset and increasing severity hit us like a storm and we were not prepared to feel so helpless.  I know that medications such as Phenobarbitol are very effective in treating seizures, but it is heart-breaking nonetheless to think that this may well be what we will need to ready ourselves for going forward.

After my father came with Adam to pick up Jenn-Jen, I remained for a few more hours at the hospital.  Unfortunately, I witnessed Katelynn undergoing five more quick episodes where she turned red, tightened up, and cried.  Her heart rate usually approaches two hundred beats per minute during these seizures, but they are still less severe in appearance compared to the ones associated with bradycardia.  Because of the ongoing frequency of these episodes despite the use of Phenobarbitol, I am concerned about just what is going on.  I asked the nurse to call us if the situation worsens and am on a mission to speak with a neurologist as soon as it is possible.

It is another long and tiring day for me, ending with exhaustion.  As bad as my it seems for my well-being, Jenn-Jen is suffering even more.  I pray for her constantly and ask God to give her strength and shelter her from feeling tormented by the suffering our twins may be undergoing.  For me, in a multitude of ways, I relate to and feel like the man in the ninth chapter of the book of Mark, who has brought his spirit-possessed son for Jesus to heal:

So they brought him.  When the spirit saw Jesus, it immediately threw the boy into a convulsion.  He fell to the ground and rolled around, foaming at the mouth. 

Jesus asked the boy’s father, “How long has be been like this?”

“From childhood,” he answered.  “It has often thrown him into fire or water to kill him.  But if you can do anything, take pity and help us.”

“If you can?” said Jesus.  “Everything is possible for him who believes.”

Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”

When Jesus saw that a crowd was running to the scene, he rebuked the evil spirit.  “You deaf and mute spirit, ” he said, “I command you, come out of him and never enter him again.”

Mark 9:20-24 New International Version

Heavenly Father, Lord, I pray tonight in the belief that, if it is in Your will, You can make my daughters whole and healthy.  Still, I pray that you help me overcome my unbelief, especially as I struggle with my frustrations.

March 9, 2008 – An alarming change

It has been extremely hectic, but I will begin with the good news.  Katelynn’s strong respiratory system has allowed her to be extubated this afternoon, and she is breathing on her own with the help of a nasal cannula.  The ventilator machine has been removed from her bedside once again, and it is such a comfort to see more of our daughter’s face, unobstructed by the tape keeping the endotracheal tube in place.  Without the ventilator, we can hear Katelynn’s sweet voice once again.  The swelling in her face has also subsided, which has provided a tremendous boost in our spirits since her surgery last Thursday.  Katelynn still remains on intravenous feedings of TPN and lipids, but they are reintroducing her to breast milk at the continuous rate of three milliliters per hour.  As she tolerates this, I am sure the nurses will slowly increase her feedings to the point where she was before her recent operation.  Today’s weigh-in shows Katelynn remaining at 1200 grams or 2 pounds 10 ounces, which is good news given her lack of milk for the last few days.

Daria is looking better than ever and appears to spend more time awake and alert.  She is still taking in her full, compressed feedings of eleven milliliters over two hours, followed by an hour-long break.   Her oxygen desaturations and infrequent bradycardia episodes seem to be less intense lately and Daria is showing strength in her ability to self-recover.  We have noticed the desaturations correlating to when her feedings take place, and the reasoning is that a full stomach means less room and extra strain on lungs.  As Daria continues to develop, this issue should start going away on its own.  In the meantime, Daria’s weight is slowing increasing, and she is a 1050 grams or 2 pounds 5 ounces as of this evening.

As for the bad news, we are noticing an alarming change taking place with Katelynn.  For the last two days, she has experienced very quick episodes that appear to be small seizures.  They occurring in two different forms, but both are very concerning.  The first type lasts only a few seconds, but Katelynn starts off with a few short cries and starts clinching her fists.  Her skin tone reddens briefly and then she starts to ease off.  The second, more severe manifestation begins with Katelynn tightening up as her back begins to arch slightly.  She will start to foam a little at her mouth and then the tightening of her muscles continues to progress while her skin tone begins to turn a little pale.  Katelynn then slips into a bradycardia heart rhythm, where her heart rate drops for a few seconds.  Shortly thereafter, she recovers and becomes nearly unconscious for a minute or two.

Jenn-Jen happened to witness both varieties of these “seizures” yesterday a few times, and during my evening visit, I saw both over the course of three hours.  It was frankly very frustrating when the nurse phoned the on-call neonatologist and he did not want to make any changes until the morning.  Jenn-Jen and I have never had to see any of children go through something as disturbing as this, but the helpless we feel while it is taking place is overwhelming.  As I left the hospital last night, I asked the nurse to make sure to call us if this worsens.  Part of me wanted to just spend the night in the NICU, but the helpless frustration would probably wipe me out for the rest of tomorrow. 

Please keep your prayers going, specifically for Katelynn’s seizure-like activity.  If this should be diagnosed as seizures, I know medication will certainly help.  The waiting game will wear us down soon before then.

March 8, 2008 – Love knows no distance

From time to time while I am spending quiet time with God, I thank Him for allowing me to attend college at the University of California, San Diego (www.ucsd.edu).  College years are so instrumental in experiencing moments of self-discovery and life lessons that carry on with you in the years to come.  When I think back to those times, I see how different I was in so many ways, yet those same times were so crucial to bringing me to where I am now.  My sophomore year at the university was, perhaps, on of the most life-changing periods of my undergraduate studies.  I had just completed my first year and was developing many friendships through my increasing involvement in the campus organization of the Asian American Christian Fellowship (www.aacf.org), or AACF.  During this time, I was still relatively young in my walk with the Lord, but I was eager to serve however I can.  An opportunity arose to help lead a small group Bible study and of all people I ended up being paired up with, it happened to be the woman I would end up marrying seven years later.  So there are many reasons why UCSD and AACF are so near and dear to my heart, but today marks one more significant addition.

Early on in my posts, I explained how I decided to use this blog primarily as a personal journal of my thoughts and prayers.  As a secondary purpose, I wanted to set up a means of providing an update as to the changes Jenn-Jen was facing while she was admitted to the high-risk pregnancy unit of the hospital, as well as the subsequent update for our twins, Katelynn and Daria, after their extremely premature birth.  With the critical nature of my family’s situation, I made no hesitations to share this website with friends and family across the country to rally up prayer support.  Little did I know how many people would end up following us through this journey of joy and despair, even to this point forty days after my girls were born.

Yesterday, I received an e-mail from an old friend from our AACF days at UCSD.  He explained that there have been a number of our friends that have been keeping up with our family’s situation and they recently sent us a letter of encouragement, along with a collective gift.  It was touching enough to hear from them after so much time has passed, but I was completely caught off guard by the generous blessing we received in the mail today.  Their act of generosity and compassion has been an illustration and testimony of God’s grace, as Jenn-Jen and I feel completely undeserving of what we have been given.  Not only do we feel blessed and encouraged, but our faith has been renewed and strengthened by this outpouring of love.  This love, given to us by our brothers and sisters in Christ, knows no distance and is not bound by the passing of time.  My words simply cannot express the gratitude I have for the kindness you have decided to share with us. 

Jenn-Jen and I did end up going to the hospital together, as Adam asked to spend the afternoon and part of the evening with a dear family from our connection group at church.  Today was also Adam’s best friend’s birthday party, so our son has kept his agenda quite full.  Given how I felt yesterday with guilt, I gave Adam the choice of spending time with me if he wished.  He was completely content to hang out with his friends instead, so I took that as a green light to tend to the girls. 

It is good news and not so good news that there has not been significant change for either Katelynn or Daria.  Katelynn’s appearance remains swollen and she seems to be tired from the surgery two days ago.  The doctor ordered her to be taken off the antibiotic, Vancomycin, so she is now only taking two medications to fight off the yet to be identified strain of gram-negative bacteria infecting her cerebrospinal fluid (CSF).  Daria is doing well, and her compressed feedings of breast milk have increased to twenty two milliliters each hour for two hours, followed by one hour of no feedings.  With Katelynn being attached to her external drainage and monitoring device (EDMD), it is highly discouraged for parents to attempt to hold their affected baby.  It is very difficult for us to think that we may not be able to hold her for some time, but we pray the that Katelynn continues to strengthen each day.

Jenn-Jen and I did get the opportunity to hold Daria for a while this afternoon and it amazes us to see how our little girl has been changing right before our eyes.  Not only does she seem bigger now, but we see the gradual changes occuring to her facial features and body movements.  While we hope for Daria to continue to gain her strength in preparation for the day she gets to come home, we are concerned if the situation should arise where Daria is sent home while Katelynn remains in the NICU.  That scenario would actually cause an unwelcomed level of disruption we are not accustomed to experiencing.

With Daylight Savings Time approaching us in a few hours, I will call it a night and try not to let that escaped hour of sleep affect me too much tomorrow.  I still cannot help but think about our old college friends from AACF and am so thankful for their spirit of love for us.  In closing tonight, I will share the same Bible passage I e-mailed them tonight:

 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
 
Ephesians 3:16-21 New International Version

March 7, 2008 – Rest for the weary

I am continuing to battle tremendous guilt when I think about the lack of time Jenn-Jen and I spend with our son, Adam.  Given the circumstances of our situation, I try to convince myself Adam is receiving the best we can offer right now, and it really could be much worse.  After all, he does get to have play dates almost on a daily basis and we have family in town to help care for him as well.  Still, I believe this guilt that keeps returning stems from the realization that I simply miss spending time with my son.  Jenn-Jen and I have been so concerned with the adjustment forced upon Adam and any negative impact it may create, but in actuality, we may be affected more than our son.  When I am being rational, I know that every day I am trying my best to be a good husband and father, but I am beginning to feel those moments are becoming fewer with each passing day.  Jenn-Jen feels this way too, as we talked about how it seems that we are always shuttling Adam off to his next activity or appointment.  So, in an effort to remedy our guilt, we try to set aside longer blocks of time, usually during the weekends, to spend with Adam.  This approached has worked fairly well in the past, but it just seems as if we are working with diminishing returns.  It has been very difficult and I would not be honest if I told you that I am not feeling emotionally worn down from the doubt that beats me from within.

Despite this ongoing challenge, I found solace and wisdom from our pastor in our conversation last night.  He brought up a perspective I had not considered in the past, that perhaps this period of adjustment for Adam is actually preparing him for his new role as a brother.  I suppose I can think of it as pilot testing of what will be to come for Adam.  Through the time spent with our friends and their children, Adam may be developing social skills that we may not be able to teach him while Katelynn and Daria remain in the hospital.  Adam is essentially learning to adapt to various family structures during the weekdays and our hope is that this will make him a better big brother when it comes time for the girls to come home.  I hope to keep this as a reminder when I am in doubt or fighting off those demons of guilt.

Putting all of the self-doubt aside, today has been an emotional day for us.  Katelynn has remained sedated throughout the day and it has been very difficult for Jenn-Jen and me to see how swollen she appears.  The pediatric neurosurgeon’s assistant came the NICU to explain to us that yesterday’s operation was definitely more invasive than the original implementation of the VAD on February 15th, mainly because the external drainage and monitoring device required the catheter to be tunneled differently.  She told us to expect the swelling to increase through tomorrow and then ease off and subside thereafter.  It was a particularly emotional moment for us to see the contrast between Katelynn’s fragile and sedated state today, as compared to how lively and energetic she was before the surgery yesterday.  I do not really remember that last time Jenn-Jen and I cried over either of our daughters, but the tears came on sudden and strong today.  One of the kind and compassionate nurses in the room came over to console Jenn-Jen by giving her an enveloping hug and ended up in tears herself.  The three of us just stood there in the middle of Room B in silence as we wiped away our tears while our hearts were breaking. 

As rough as it has been with yesterday’s turn of events for Katelynn, we are grateful to see Daria doing well.  The day nurse placed a stuffed bear right next to Daria, which made for a heart-warming scene.  Today the doctor is trying to change the feedings to a compressed schedule again, with ten milliliters each hour for two hours, and following this with a one hour break.  The last time this was attempted, it created a significant increase in the frequency of Daria’s oxygen desaturations, so they changed it back to a continuous feeding.  Hopefully, Daria will tolerate it more this time around.  Everything else is looking very positive for our little angel and we pray that it will continue on this way.

I am completely spent again from an emotional standpoint and cannot help but think that Katelynn will need to undergo another surgery in a few weeks to replace the drainage device currently attached to her head.  Once the bacterial infection clears from her cerebrospinal fluid, the neurosurgeon will have a clearer time line on when this follow-up  operation will take place.  It is so painful to think that our little baby will need to endure, at the minimum, another surgery.  Tonight I pray for peace and rest in preparation for the journey ahead.  Jesus tells us to turn to him when we are tired and unload our burdens:

Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.

Matthew 11:28-30 New International Version 

     

March 6, 2008 – Recovering from surgery

Katelynn handled the surgical procedure to replace her ventricular access device (VAD) very well.  The pediatric neurosurgeon explained the bacterial infection poses a risk of spreading to a life-threatening level even if Katelynn was simply put on antibiotics, so there was a strong sense of urgency to take out the device.  An external drainage and monitoring device took the place of the VAD, but this is a very temporary solution, with an expected use of four to five weeks.  The purpose of using this is to ensure the bacterial infection clears out before putting in a more permanent solution, which may be a ventricular shunt.  Apparently, the infection can seep into the plastic catheter in the ventricles and surrounding areas of the brain.  The catheter used in the replacement device is actually coated with antibiotics, so this will help minimize the recurrence of bacterial growth. 

To fight off the infection, Katelynn is undergoing a regimen of three antibiotics:  Vancomycin (http://en.wikipedia.org/wiki/Vancomycin), Ceftazidime (http://en.wikipedia.org/wiki/Ceftazidime), and Tobramycin (http://en.wikipedia.org/wiki/Tobramycin).  Laboratory cultures of her cerebrospinal fluid will be conducted on a daily basis for the time being until there is clear evidence the infection is gone.  The nurses tell me that the infection did not seem to be very advanced, as Katelynn was not exhibiting any symptoms of extreme discomfort or the arching of her back.  As stressful as it is to have our daughter undergo yet another surgical operation, I consider us fortunate the infection was quickly identified and the proper steps were taken. 

Even though everything with the surgery went very well, Jenn-Jen and I were quite upset to hear the pediatric neurosurgeon tell us in his seventeen years of performing VAD operations, this is the very first time he has experienced a post-surgical infection.  I really wish we did not have the honor of wearing this badge of distinction.  Additionally, Katelynn was intubated for the operation and will remain on a ventilator for a little while.  This is the third time she has been intubated since birth, so it is familiar, yet just as painful as seeing her on the ventilator the first time.  With the external drainage and monitoring device attached, even if Katelynn’s endotracheal tube is removed, we may not feel comfortable holding her for some time until we feel the device is securely in place.  No matter how positive I try to look at today’s events, this is still a significant setback for us.

As difficult as it has been today, Jenn-Jen and I were very comforted to have our dear friend and Executive Pastor visit us at the hospital tonight.  There’s a saying at our church that “no one paddles alone,” and amidst all of the struggles and trials we have undergone, it touches us deeply to know there are many of you out there praying and caring for us.  Speaking with our pastor, Jenn-Jen and I really see more and more the need to guard our hearts from letting the turmoil and even the day-to-day events place a wedge in our marriage relationship.  It is so easy to be completely consumed by everything we are going through and unwittingly neglect each other.  The real danger is that this usually starts off slowly and before long, the relationship is in danger of collapse.  Jenn-Jen and I are now seriously looking at different ways to combat this silent enemy that can ruin a marriage and are committing ourselves to spending time together regularly.  Of course, this will not come easy, given all of the drains we have on our time and energy.  Nonetheless, both of us strongly believe that marriage is a relationship that cannot sit idle.  So, in closing, we thank you for keeping our family and our marriage in your prayers.  It is truly through the grace of God that we have these blessings.

March 6, 2008 – An unexpected step back into the operating room

Sometimes I think I am becoming overly optimistic, or simply complacent at the least.  Jenn-Jen called from the hospital to tell me that Katelynn’s recent lab work is indicating her cerebrospinal fluid has a bacterial infection.  This may also explain her recent increased temperature and heart rate.  Unfortunately, our pediatric neurosurgeon is calling for Katelynn to go into surgery late this afternoon to have her ventricular access device (VAD) replaced.  Frankly, I am a little numb from this setback, as it will mean that Katelynn will be back on the ventilator again for the third time and will need to be in a separate incubator from Daria.  The doctors are also starting her up on a cocktail of three different antibiotics, which I will confirm later when I arrive at the hospital.

Please keep Katelynn in your prayers.  She is tough, but my heart breaks thinking that this will be her third visit to the operating room.  It was only hours ago when I was writing about how our flowering pear tree out back reminds me so much of my precious little girls.  Little did I expect Katelynn’s resiliency to be tested so soon again.  I will post an update as soon as I have news.

March 5, 2008 – Our special tree

This has to be one of my favorite times of the year in Sacramento.  We have been experiencing a seemingly endless supply of sunny days with temperatures in the high sixties and the foliage is in full bloom.  Even my lawn is starting to green, which speaks volumes, considering the lack of attention it received the past couple of months.  Of course, I owe a couple of my neighbors a big thank you for keeping the grass in check while I have been busy juggling time between the twins and work. 

When Jenn-Jen and I get the chance to step out into my backyard, we always marvel at one particular flowering pear tree along one of our side fences.  About four years ago, we experienced a very blustery day here in Sacramento.  The winds were strong enough to cause quite a mess around town and unfortunately, this young tree split and lost half of its leafy branches.  At the time, the tree was planted in our front yard, and as we are living in a new housing development, our builder agreed to uproot the severely damaged tree and replace it.  The day came when a man showed up with a shovel and pulled the poor tree out.  He asked us if we wanted him to throw it out or if we still wanted to keep it.  Jenn-Jen and I gave it some thought and agreed we would take it and replant it in our back yard just to see what happens.

Well, in the years that have passed, that poor little tree has become our first bloomer of the year and stands strong and tall.  In fact, when I look at the tree, I often forget it was so beaten and battered.  It is not until I examine it closely when I see exactly where the limbs had split off.  Jenn-Jen and I are still amazed at the resiliency of our beautiful tree and are glad we decided to give it a fighting chance.  As silly as it is to say I am so proud of a tree, that is exactly how I feel. 

The more I think about the flowering pear tree we saved, the more I associate its comeback with Katelynn and Daria.  Reading back to my posts a month ago, it still brings back so much pain to remember when our doctor told us we should consider whether we want to continue life support for the twins.  I look at Katelynn and Daria today and wonder to myself how that could have even been a consideration.  They certainly have progressed beyond our expectations and continue to do so with only infrequent minor issues.  One day it will be heart-warming for Jenn-Jen and me to share the story about our special tree with the girls.

Katelynn and Daria are continuing to do well, but are keeping the nurses on their feet with their temperature variance.  Usually, the incubators house one baby at a time, so keeping a constant temperature is not an easy task.  When twins are put together into the bed, the challenge is to keep both babies within the right temperature range.  For some reason, our Katelynn is quite a bit warmer than Daria, so the bed temperature needs to be kept at a setting where Katelynn is not too hot and Daria is not too cold.  Just as we think the nurses found the right combination of heat and blankets, we see signs of discomfort, mainly from Katelynn.  Her heart rate tends to jump up to 190 beats per minute or higher when she starts feeling too warm.  Daria, on the other hand, does not exhibit many signs that she is cold, so the nurses take her temperature every so often to make sure she is warm enough.  I am sure we will figure this out, and as the girls continue to gain weight, this may resolve itself soon.

With the weather being so wonderful, I think I may need to take a stroll out to the backyard and maybe spend some time in prayer and thanksgiving by our special tree.

March 4, 2008 – Physical therapy

Jenn-Jen came back from the hospital this afternoon with some interesting news.  Unknown to us, a physical therapist has been in a couple of times to work with Katelynn, and we may not have found out if she had not stopped by while my wife was visiting the twins.  From the therapist’s assessments, we are hearing some promising news that Katelynn is not showing the motor skill deficiencies and issues normally associated with premature babies with grade 4 brain hemorrhages.  I want to be hopeful that this is a lasting victory, but we will definitely need to ask more specific questions.  Nonetheless, it is so comforting to hear good news, especially as it relates to the long term prognosis for either of the girls.  Other than Katelynn’s news, Jenn-Jen learned a few exercises to help the girls develop their muscles properly while they remain in their incubator bed in the NICU. 

We also learned the twins each received a dose of Epoetin (http://www.medicinenet.com/epoetin_alfa/article.htm), to help with their anemia, or low blood count.  Katelynn and Daria have received several blood transfusions since their births, and one of the side effects of too many transfusions is the body begins to slow in its own production of blood.  The drug essentially mimics erythropoietin, a protein naturally produced by our bodies, and helps stimulate the bone marrow within the recipient to create more red blood cells.  Medicine certainly provides many ways for Katelynn and Daria to build up their bodies too premature and underdeveloped to handle life under normal circumstances.  While it is painful to think they received another needle stick, I count my blessings and thank God that we live in the age we do today.  Many of the procedures, medications and even method of care make it possible for our girls to be with us today.  For that, I cannot be more grateful.

I had a relatively short, but very enjoyable visit with Katelynn and Daria tonight.  It was a rare sight to come into Room B of the NICU to see Daria completely wide-eyed and awake while Katelynn was peacefully snoozing away.  Usually Katelynn is the noisy and active one between the two, and it seems that Daria just cannot sleep enough through day and night.  With the respiratory and temperature issues the past few days, I missed holding my daughters, so I took advantage of their stable condition and decided to give them each a turn in my arms.  Daria stayed awake the whole time I held her, so it was almost therapeutic for me to just talk and sing to her softly while she looked at me with her beautiful little eyes.  While I wanted to hold Katelynn also, I decided to wait for the right moment when she began to rustle before interrupting her sleep.  Once she came to, I put Daria back into the bed to allow the nurse to do her evening assessment.  Katelynn did spend a little while awake while I held her, but slowly faded into a gentle slumber as I rocked and quietly sang to her.  Being so close to her allowed me to really study her head, as the size and shape seems to have changed since her ventricular access device (VAD) was surgically implanted.  We still remain hopeful that the production and absorption of Katelynn’s cerebrospinal fluid will come into equilibrium someday soon.

Thinking back to all that has happened during the short lives of my girls, with each passing I find myself feeling more like an active participant than a passive spectator.  During my quiet time today, I can feel God’s reassurance that He is taking care of my precious daughters and hear Him tell me to trust even more.  While many of you have been so kind in providing encouraging words about our faith in the Lord, I confess that I often struggle to let go completely and let Him lead.  I know myself well enough to say that my faith in God often grows stronger in times of crisis, but what is difficult is keeping my walk with Jesus this close as things calm down and become more routine.  So, I pray tonight to keep the door of faith open for Him whatever the situation may be, whenever the time arises and, most importantly, however much I feel that I can do things on my own.  There’s a quote I discovered a few years ago that has so much meaning with all that has happened, so I will say goodnight and close with these words:

 Faith is to believe what you do not see; the reward of this faith is to see what you believe. – Saint Augustine

March 3, 2008 – Why I feel like Viktor Navorski

The Special Care Nursery, or NICU, at Sutter Memorial Hospital has really become a second home to us.  Sitting here in what I have fondly named “Chair 4″ in the NICU waiting area, I begin to realize I am drawing a sense of comfortable familiarity with this place that is so often associated with stress and uncontrollable emotion.  As I have been traveling back and forth between home and the hospital since January 18th, the day Jenn-Jen was admitted, I have not given much thought to the little details that surround me every moment I am in the hospital.  I just mentioned Chair 4 and you may wonder why there is a significance.  No, I am not suffering from some sort of obsessive compulsive disorder that drives me to claim this seat as my own, nor am superstitious in my thinking.  Chair 4 just happens to be the chair closest to the electrical outlet on the wall that supplies power to my computer.  So, I simply sit here because it is the easiest to get plugged in and connect.

In my efforts to make hosptial life simpler, through exploration and experimentation I have learned where the best shortcuts and cleanest restrooms are.  Jenn-Jen and I even discovered that the food patients receive is so much better than the food served in the cafeteria.  Why that is still confounds us.  Parking in the third row of the lot will often save you time, since everyone tries to find a space in the first row and ends up being further out.  These little things really do not seem like much, but put together, they give me a sense of routine and expectation amidst our unexpected crisis that began a month and a half ago.  

In some ways, I relate to Tom Hank’s character, Viktor Navorski, in the movie “The Terminal.”  If you have not seen the film, Viktor is stranded at the John F. Kennedy Airport in New York City after a military coup in his fictional home country of Krakozhia leaves him without citizenship.  He is also not allowed to return home because of the revolution, so Viktor spends the next nine months living in the airport.  As you watch the movie, you see a progression of the character’s weakness and fear transform into strength and hope.  Through the past five weeks since Katelynn and Daria were born, I felt have also seen a similar emotional metamorphosis, both within myself and with Jenn-Jen.  Like the starving Viktor Navorski, eating saltine crackers with ketchup early in the movie, we too have been through our low points.  Just like Viktor, we have also learned to harness the power of hope and adapt to our surroundings that have become a second home to us.  The difference here is that Viktor’s hope came from a promise he made to his father, while our hope comes from a promise God, our Father, made to us.  Back on January 31st, when we learned about Katelynn’s IVH turning into a grade 4, I referred to a scripture:

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.”

Jeremiah 29:11-13  New International Version

I find so much hope and peace in these words, especially as we are seeing the twins develop and grow stronger each day.  They still have their respiratory issues with oxygen desaturations, infrequent heart rate drops and temperature regulation issues, but both Katelynn and Daria have come such a long way in a little over a month since they were born.  Both are over the two pound mark now, with Katelynn at 2 pounds 5 ounces (1060 grams) and Daria at 2 pounds 1 ounce (930 grams).  Combined, they now weigh more than Adam when he was born eight weeks early at 4 pounds 5 ounces.  I still find that amazing every time I think about it.

Thank you all again for your prayers, support and generosity.  I will continue to ask for your prayers until we have the girls home and, even then, we will still need them for any potential long-term issues that may come.  There is still so much ahead for us, but we are trying to take it a step at a time.  With everything you have done and continue to do, we feel blessed beyond measure and know that we are not alone in our struggles.

Thank you again and goodnight from Chair 4. 

March 2, 2008 – Things to do

Usually I try to post an entry every evening, but I have to confess that I passed out in exhaustion on the sofa last night sometime during the ten o’clock news.  When I came to, it was a little past one in the morning, so I figured it may be best call it a night.

During a recent discussion with the girls’ neonatologist, we asked about what to expect in terms of a potential time frame for discharge for Katelynn and Daria.  While he could not provide us with any specifics, he did say that they try to let babies go home anywhere from thirty five to thirty seven weeks gestational age.  The twins are approaching thirty weeks in a couple of days, so Jenn-Jen and I are beginning to feel some pressure to prepare for the homecoming.  One major issue we have been putting off for some time is a vehicle purchase, which in all likelihood will be a minivan.  With two infant car seats, a double stroller and Adam’s booster seat, we will be outsizing our current car very soon.  So, on top of our busy schedule, we will need to start shopping in the very near future.  With gasoline prices at an all-time high, I have serious reservations about buying an automobile, but our options are quite limited.  For you minivan owners out there, I would love to hear your positive and negative feedback on your vehicles.  We have not bought a car in seven years, so this feels like I am exercising a muscle I have not used in ages.

Back at home, we will need to focus on preparing the girls’ room, which is no where near completion.  For the time being, we will aim to keep Katelynn and Daria together in Adam’s old crib.  Thinking about the number of diapers we will be going through is a little daunting, so I may need to consider setting aside a dedicated storage area.  Our Costco membership will certainly pay for itself over the course of the coming years.  I never thought about potty training as a financial planning maneuver until now.  Nonetheless, the room will need to be clean, prepped and baby-friendly before long.

During our visit on Sunday, we found the girls to be doing fairly well.  Before long though, Daria’s heart rate dropped into bradycardia and her oxygen saturation level fell as well.  The nurse jokingly said that the girls are looking for our attention when we enter the room, as they do just fine when we aren’t visiting.  Katelynn still has an occasional desat, but she tends to self-recover very quickly.  Daria’s drops usually require stimulation and sometimes an increase in her oxygen levels.  As much as I know this is very normal for premature babies, I keep praying the girls get stronger each day and pass this stage.

In terms of feedings, Daria is still receiving six milliliters of milk continuously, while Katelynn is on the compressed feeding of twenty two milliliters for one hour, followed by a two hour stop.  Both of the twins are taking well to their schedules, as they are producing good stools and the nurses are not finding any significant levels of residual milk or air in their stomachs.  It is strange to think that some point, the amount of milk they need will begin to approach what Jenn-Jen is able to produce.  Right now though, we are facing a shortage of freezer space, here at home and at the hospital.  Maybe I should look for one of those freezer units at Costco while I contemplate the cost of diapers.

March 1, 2008 – Family time

I really have to applaud my wife for her strength, sacrifice and diligence.  As she and I are huge proponents of breastfeeding, especially with the nutritional needs of premature babies, it is clearly evident Jenn-Jen makes no small effort to provide the best she can for the girls.  When we calculate the amount of time required to give Katelynn and Daria breast milk each day, it is quite a staggering figure.  Outside of spending time on the breast pump approximately every two and a half hours during the day, Jenn-Jen wakes herself up naturally a couple of times at night to pump as well.  As a result, Jenn-Jen’s agenda during the day often revolves around her lactation schedule, and this can be a challenge with any outside activities.  My wife and I understand the effort involved, but Jenn-Jen often feels she is not giving Adam enough time as a mother. 

To give you a better understanding, we spent some time last night and this morning working around the timing of the pumpings so we could have quality family time today.  Adam spent last night at my parents’ home, which was a tremendous help in allowing us set up time to take Adam out to McKinley Park for a picnic and outdoor fun.  During the two and a half hours between pumps, we were able to spend some great moments eating on our picnic blanket and feeding the resident water fowl at the pond.  I was proud of Adam for having the courage to hand feed the fairly large geese, who were not at all afraid to come over for a handout.  With the recent weather sunny and hovering in the upper sixties during the day, it was a perfect time to be at this jewel in East Sacramento.  It is especially nice that the park is only about a mile away from the hospital, so it allowed for Jenn-Jen to return to provide for the girls while Adam and I had additional father-son time. 

After Jenn-Jen left, my son and I spent some great moments testing our balance on the various parts of the fantastic playground area.  We followed this up with some time over at the public library, which is just a stone’s throw from the playground.  Adam is a voracious reader, considering he turned five not even two months ago, and the library is always a favorite destination for him.  I selected a couple of personal finance books with perhaps an unrealistic goal of reading through either in the near future, while Adam sought out a book about math.  I mused to myself thinking how a pre-kindergarten youngster would consider, of all things, a book about numbers over titles regarding dragons, robots or fire engines.  On his very own, Adam found a book, “Mouse’s First Day of School,” mainly because he noticed a simple addition calculation drawn on the cover.  Yes, I know my son is a nerd, but to give him credit, he has recently checked out books about animals and pirates.

With our books in hand, we exited the library and walked around the building toward the McKinley Park tennis courts.  This part of the park is particularly nostalgic for me, as I spent a fair amount of my high school years playing local tennis tournaments here, and even won a couple Labor Day events with my old doubles partner.  I packed tennis racquets for Adam and myself, hoping we would be able to improve Adam’s swing and coordination.  As we approached the bleachers right outside of the courts, we were completely surprised to hear a voice calling out my son’s name.  One of Adam’s preschool classmates happened to be on a family outing to the park and came to the tennis courts to play with another family friend.  The boys attempted to hit a few balls together, but in reality, it turned into exercise for me, as I spent most of my time chasing down balls hit into the adjacent courts.  We decided this was not going to work, as it became too disruptive for the neighboring players, and I was glad the two youngsters were more interested in going back outside to dig in the dirt with sticks.

Before long, Adam’s friend had to leave and Jenn-Jen was on her way back to pick us up.  We decided to go to the hospital so Adam could say hello to his sisters and I could see the girls for the first time today.  Both Katelynn and Daria were having some issues with oxygen desaturations and their body temperatures, so the nurse was working on getting to the right settings.  We spent only about thirty minutes at the NICU, as we were approaching dinner time and I could see Adam was beginning to look quite tired.  It had been quite a busy day for all of us, so the thought of a quiet dinner at home was a very welcome thought.

I did venture back out to the hospital in the evening after Adam turned in for the night.  The girls found their comfort zone and we did not have much trouble in terms of their respiration or temperatures.  I hesitate to handle Katelynn or Daria when either of them experienced difficulties during the day, so I only ended up changing their diapers during the evening assessment.  It was very pleasing to see that Daria is now at 920 grams, or 2 pounds even.  She’s beginning to show some fat on her cheeks and is working hard to catch up with her sister, who is now at 1040 grams, or 2 pounds 5 ounces.  After the nurse finished up with the girls, I enjoyed watching them doze off and rest peacefully.  The 10:45 PM shift change quickly came and I was able to stay just a little longer before I was politely asked to leave.  Seeing how comfortable the girls were sleeping, I figured it was probably time for me to head home and do the same.

February 29, 2008 – An extra day this year

2008 happens to be a leap year and today we received our extra day on the calendar.  About a month ago, we counted each passing day with fearful hope that Katelynn and Daria would come through their battle to stay alive.  It has been said that we start dying the day we are born, but those particular words had such a different and impactful meaning when it applied to the twins.  I remember looking at the calendar and praising the Lord for each additional day He allowed the girls to be with us, but inside I struggled so much to be strong enough to let one or both of them go, if that time should come.  I wouldn’t be honest if I told you I don’t fight this fear anymore, but I can say I have grown stronger in so many ways I would not have expected of myself.  Still, the strength I have gained is not through any of my own doing, but I give credit to Him, who has done the immeasurably more than I would ask or imagine.  The changes I have experienced truly remind me of a Biblical passage I turned to so often during my times of struggle:

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything.  If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.  But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.  That man should not think he will receive anything from the Lord; he is a double-minded man, unstable in all he does.

James 1:2-8 New International Version

Today, Jenn-Jen and I spent some time speaking with the twins’ neonatologist to get his assessment on Katelynn and Daria’s prognosis.  We were pleased to hear about Katelynn’s improvements with the cerebrospinal fluid (CSF) taps that are still being done twice daily.  As the visible evidence of blooding is literally fading away in the draws, we are hopeful that the clogging effect will continue to decrease.  Ultimately, if we can reach a point where Katelynn’s production of CSF is in equilbrium with her absorption rate, the taps will no longer be a necessity.  Still, her ventricular access device (VAD) may remain in her brain and skull at least until she turns six months old.  I understand there is a possibility the device may never be removed, just to prevent possible infection. 

As for Daria’s recent head ultrasound, the doctor feels confident that it is really a grade 2 bleed, while Radiology will continue to categorize it as a grade 3.  Either way does not matter much to us, as long as we know the hemorrhaging has not worsened to the dreaded grade 4 status.  We are seeing signs that the bleeding is resolving itself, so we remain hopeful that Daria will not experience adverse long-term effects and praise God for the good news.  At this point, there is no definitive order for the next ultrasound, and we pray there will not be a need.

The girls are slowly gaining weight and the feedings have changed.  Katelynn is coming in at two pounds, two ounces, or 970 grams, and Daria is still smaller at one pound, fifteen ounces, or 870 grams.  Yesterday the girls had their feedings changed to what is called a “compressed feeding,” consisting of ten milliliters of breastmilk each hour for two hours, followed by an hour break.  Daria, unfortunately, did not take to this new schedule very well and the nurses were noticing an increase in oxygen desaturations.  The doctor explained the compression may create some internal pressure that may lead to the desats, so he decided to move Daria back to six milliters continuously every hour.  Katelynn, on the other hand, tolerated the change very well, so her new orders were to have the feedings increased to twenty milliters for one hour, followed by a two hour stop.  This sure seems like a lot of breast milk in a very short amount of time, so we will have to see the results tomorrow.  The compression does make sense from a developmental viewpoint, as full-term babies experience full feedings followed by a few hours of digestion.

As I wrap up tonight’s post, I want to share a song that has been my prayer through the emotional journey during the past month (http://www.youtube.com/watch?v=3mZH9T9XNVU).  The music is originally from Matt Redman, but I actually prefer the version by the South African band, Tree63.  Each time as I listen to the song, I try to reflect upon all of joy and sadness I have been through since Katelynn and Daria were born.  I listen to this and Third Day’s Your Love Oh Lord (Psalm 36) in worship almost on a daily basis, and it brings me so much joy as I am seeing Adam pick up the tune and sing along in his sweet little voice.  The first two verses of the song have been so inspirational in reminding me to put my faith in God whatever the situation may be, and my hope is that you will find faith in Him as I have.

Blessed be your name
In the land that is plentiful
Where the streams of abundance flow
Blessed be your name

Blessed be your name
When I’m found in the desert place
Though I walk through the wilderness
Blessed be your name

I will place links to both songs in the links section of the blog homepage in the hopes that you will find them helpful in developing your walk with Christ.