February 15, 2008 – Another surgery completed

Katelynn came out of surgery with impressive stamina and the heaviness in my chest has subsided once more.  The pediatric neurosurgeon quickly debriefed me and said the operation went perfectly.  One of the main concerns I forgot to ask before Katelynn went into the operating room was what potential damage, if any, would this procedure cause to my daughter’s brain.  It was very reassuring to hear the doctor tell me that the placement of the VAD itself would not cause any harm. 

Jenn-Jen’s brother arrived at the hospital shortly after the operation and it was comforting to see him again.  We knew that he would be coming through Sacramento on his way home to Southern California, but we certainly did not anticipate we would see him on such a difficult day.  It was an emotional event for us to introduce him to Katelynn and Daria, but we were glad that he also had some time with Adam before his evening flight.  Adam adores his uncle Jesse and was sad to see him go so soon.  When we asked my son when he’d like to see his uncle again, he gave it a little thought and responded “ten days.” 

Katelynn has stabilized well after her surgery, but remains on the ventilator with fairly low settings.  She is taking a breath on her own every so often, and throughout the day, we have seen her improve.  Hopefully she will continue on her path towards extubation, as it will be wonderful to hear her tiny voice again.  This evening, I noticed she was opening her eyes periodically and moving her arms and legs slightly.  The nurses have restarted her on the broad-spectrum antibiotic Ceftazidime on a forty eight hour course to help prevent infection and are using Fentanyl to keep her as comfortable and pain-free as possible.

Daria is continuing to improve on her ventilator settings as well, and there is not all too much to report.  I am watching her take many breaths on her own, so if she continues to keep improving her ventilator numbers, I hope they will consider weaning her off completely soon.  She appears to be comfortable, as we see her resting during our visits, but she also opens her eyes and stretches her limbs to give her parents some reassurance that she is doing well.  I am curious to find out if she is overcoming her infection, so I will need to ask about her laboratory results tomorrow.

February 15, 2008 – Waiting

It is 10:19 AM, and I am once again in the Surgery Waiting Room on the first floor of Sutter Memorial Hospital.  Unfortunately, this room has become all too familiar to me in the past two and a half weeks.  It is crowded in here and the monitor that shows the status of the operations in progress does not show Kateylnn.  I assume that they are still preparing to intubate her and administer general anesthesia in preparation for her Ventricular Access Device (VAD) procedure.  The pediatric neurosurgeon tells us that the VAD will be placed on the right side of Katelynn’s brain, so any potential impact to her motor skills will be limited to her left side.  The majority of people are naturally right-handed, so this decision was made in an effort to make things easier for Katelynn in the future.  The neurosurgeon is top-notch and many children have actually been flown in to have him operate, so we feel some comfort in this.  After the operation, Katelynn will be on the ventilator once again and will need to be fed TPN and lipids intravenously until she is stable enough to take breast milk feedings through her oral-gastric tube.  We are fervently praying that the surgery, scheduled for half an hour, will proceed without incident and I am still at peace knowing that God is with our tough little Katelynn.

February 14, 2008 – Another butterfly moment

Most of us know the account of Noah’s Ark either through church or childhood stories.  The part of the story that impacts me the most is when the flood finally recedes, God makes a covenant, or agreement, that He will never again allow the waters to destroy all life again.  As a sign of this covenant, God tells Noah that he will put a rainbow in the clouds to remind Him of the promise made.

Back on February 8th, I wrote about how we must not interfere with the struggle a caterpillar undergoes as it transforms into a butterfly.  Just as the rainbow stands as a sign of God’s agreement with Noah, I believe the butterfly has become a reminder for me to trust that God will take care of my daughters.  You may call it pure coincidence, in the course of the past six days, the following have occurred:

• Our dear friend that came to stay with us happened to whip up butterfly-shaped biscuits for breakfast this past Saturday, February 9th.  I didn’t tell her anything about my post, nor did she have access to the Internet or speak with anyone about the story.
• On February 10th, Katelynn’s nurse presented us with a pretty receiving blanket decorated with a beautiful purple butterfly pattern.  This was apparently a gift from the hospital’s Child Life Specialist group, and since Sunday, it has been wrapped around the padding that Katelynn rests on.
• This morning we arrived to find a Valentine’s Day present from the hospital for Katelynn, a Beanie Baby stuffed animal in the shape of a  butterfly.

Personally, I believe that God reveals Himself to us, sometimes in very subtle ways that make you wonder if He is trying to tell you something.  Butterfly-shaped biscuits made me pause slightly and smile to myself.  The butterfly blanket made me have a serious conversation with Jenn-Jen, and she also found it to be a sign from the Lord.  Seeing the butterfly Beanie Baby next to Katelynn’s incubator this morning gave me that tingling feeling that I only get when I know that God is clearly making His presence and I had to just stop and pray.  Since then, I have been more at peace than ever in quite a long time, and in all honesty, I should not be at all…

We came in to the NICU in the morning to find Daria having a little difficulty with her respiration and Katelynn doing just fine.  It wasn’t long after I saw Katelynn’s Valentine’s Day gift when the neonatologist came in with that “maybe you should sit down” look on his face.  He went on to explain that Katelynn’s head circumference had increased overnight, but not outside of normal parameters for growth.  Still, the doctor felt that Katelynn’s fontanelle, or soft spot on her skull, looked a little too full and firm, enough that he would have the pediatric neurosurgeon called in for consultation.  Jenn-Jen and I both felt as if the wind had been knocked out of us, as this meant that we may be one step closer to having Katelynn undergo surgery to relieve the pressure mounting on her brain.  We would know for sure by the end of the day, but immediately, we entered back into the vigilant, “prepare for the worst case scenario” mentality that saps the spirit right out of you.  I spent some time praying that the IVH would subside and for God to intervene and provide healing.

Jenn-Jen and I had to leave the hospital shortly thereafter to go home before Adam came back from school.  We arrived at home, cooked a meal and the three of us enjoyed eating a nice and healthy lunch together.  For the past two weeks, Adam would normally go to a friend’s or extended family’s house after school while Jenn-Jen and I were at the hospital.  Adam’s pre-Kindergarten check up happened to be scheduled today, and we were not willing to wait another six weeks to have it rescheduled.  So after eating lunch, we went to the pediatrician’s office to find out that Adam needed four immunization vaccines done.  I still remember getting my shots at Adam’s age and it was painful for me to think of what he would need to undergo.  The check-up went fine and we did everything we could to bolster Adam’s courage before the nurse came in with the needles.  Adam actually was very brave and winced during each of the first three shots to his thighs, but the fourth happened to be the notoriously painful measles, mumps and rubella (MMR) vaccine.  My poor son screamed in pain and couldn’t stop crying even after I carried him out to the car with a nice set of Legos he picked as a prize for being a good patient.  We told him that we would now be heading to the hospital to see his good friend, Miss Emily, the Child Life Specialist.  Adam had been looking forward to seeing his friend again, but the soreness was still seriously bothering him.  Jenn-Jen and I couldn’t help my giggle to ourselves when Adam asked if Miss Emily could come out to the car window instead.  I guess our five year old’s solution to avoid walking with pain in both thighs is to have the Child Life Specialist group immediately institute a new “Drive Thru” service.  He’s my little trooper, but I can’t deny that he’s definitely a better negotiator.

Adam’s grandma met us at the hospital and spent some time marvelling at Katelynn and Daria’s developmental progress.  In the eyes of grandparents, progress often equates to tangible indicators such as the girls being awake when they are visiting.  Adam was also doing very well with Miss Emily helping him apply various probes and monitors to a muslin doll used to help children better understand why their little brother or sister have more wires attached to them than the insides of a personal computer.  Jenn-Jen came back from pumping, and Adam left with my mother so we could spend additional time with the girls.  I actually ended up spending the better part of the last hour of our visit networking with another NICU father who’s daughter was born at twenty four weeks gestation.  I will definitely share more about this remarkable family in a future post.

Jenn-Jen decided to stay at home while I went out with Adam and my mother for a quick dinner.  With the busy times we are facing, I am saddened to say that this year’s Valentine’s Day is far from the normal romantic holiday Jenn-Jen and I typically celebrate together.  We finished dinner and headed home to spend some time together with my wife before Adam’s bedtime.  When I walked through the door, I found Jenn-Jen at the kitchen table sobbing next to her dinner and a mountain of used Kleenex.  She told me that the pediatric neurosurgeon called and told her that Katelynn would need to go into surgery tomorrow morning so they can relieve the pressure in her brain ventricles.  With all of Katelynn’s recent progress, this is such a huge setback.  I couldn’t think of anything to say or do to comfort poor Jenn-Jen.  Personally I know that the Ventricular Access Device (VAD) procedure will be beneficial for Katleynn, as it allows the doctors to drain excess fluid from her brain ventricles via a small dome-like “button” implanted under the scalp.  Nonetheless, it is still hard to swallow that our little girl will be undergoing yet another surgical operation within her third week of life.  As Katelynn will need to be put under general anesthesia, she will, unfortunately, need to be intubated with an endotracheal tube once again.  We just had that removed two days ago, so this news really makes us feel as if we’ve been struck down once again.

While I am relatively calm and at peace right now, I know that my poor Jenn-Jen is suffering from watching our daughter undergo more pain.  I ask that you pray not only for Katelynn to be strong and pull through her surgery in the morning, but also for my wife to heal emotionally from all the torment she faces.  We are once again in the valley, but I keep telling myself that this is yet another butterfly moment.