February 23, 2008 – Distinct and unique

Evenings at the NICU at Sutter Memorial Hospital are probably my favorite when it comes to visiting times with Katelynn and Daria.  Unless there is a new infant admission from a high-risk pregnancy taking place, the whole unit has a very calm peace about it.  I really enjoy the time I spend at night watching over the girls, and in a few days, after I return to work, the nighttime will become my my regular visiting time.  A pattern for my trips out to the hospital has emerged.  After I read Adam his bedtime story and pray together, I arrive at the hospital with a few quiet hours watching the girls rest as they are snuggled close together.  The nurses’ shift change occurs at 10:45 PM, and it is inconsistent whether I am asked to leave the NICU.  For the most part, I try to wrap up my visit by this time and spend anywhere from fifteen to thirty minutes upstairs in the seventh floor chapel, in prayer and reflection.  The chapel, and probably the entire floor, is usually completely empty, so I find the time of solitude to be extremely replenishing to the soul. 

Tonight I spent most of my prayer time asking the Lord to heal Katelynn brain, as we learned from her recent head ultrasound that her ventricles have expanded from the hydrocephalus.  Our neonatologist explained that the body produces cerebrospinal fluid (CSF) every day to replenish itself, however, in the case of an intraventricular hemorrhage, the blood that enters the ventricles essentially ”clogs the plumbing” and creates the unwanted pressure within the brain.  Without the ventricular access device (VAD) surgically implemented in Katelynn’s head, the pressure would surely have caused further brain damage that would ultimately result in death.  Since the VAD was put in, the doctor would tap the fluid and draw out anywhere from five to nine milliliters each day to relieve the swelling ventricles.  Unfortunately, the ultrasound findings tell us this is not enough.  At this point, we are waiting to hear from our pediatric neurosurgeon to determine if a second CSF tap will be the best approach to prevent further expansion of Katelynn’s ventricular area.  We have been cruising on good news for some time, so the ultrasound provided me a sound reminder of the severity of Katelynn’s condition.  Over time, the blood that is in the ventricles will be cleared out, but this process can take weeks.  So I continue to ask God for his healing in this situation for Katelynn.

Other than the ultrasound, Jenn-Jen and I were disappointed to come into the NICU to find Katelynn back on oxygen via the nasal cannula.  This is probably a result of the unusually long period of time we spent handling the girls yesterday, as oxygen desaturations are a sign of fatigue for premature babies.  Katelynn’s settings for her air are fairly low, so we hope she will not need to be on oxygen very long. 

From the digestive system perspective, Katelynn is doing well with her increased feedings.  She is now at four milliliters of milk every hour and the order is to up this number by half a milliliter every twelve hours.  At this rate, she should be off TPN and lipids by tomorrow.  Hopefully, there will be no issues as we work on moving Katelynn to a full feed.

Daria is doing very well today and handled the skin to skin contact time with me without any problem.  She is due for her head ultrasound on Monday, and I am very eager to find out if her brain hemorrhage has subsided.  All indications point to this, but the results will help confirm her status.  Daria remains on full feedings of six milliliters of breast milk every hour, and she provided us with a couple of large stools during the the day to show us the her digestion is working fine and dandy.  Everything else with our daughter is looking positive, so we pray that we will continue with this trend.

Since the girls have been moved to the same incubator bed, Jenn-Jen and I have really begun to witness each of their distinct and unique personalities and mannerisms.  Katelynn is definitely our spunky, active, and very vocal twin, while Daria is cool, calm and collected.  When you see both twins together, you cannot help but notice Katelynn fidgeting around, practically elbowing Daria every chance she gets.  Still, Daria is such a sound sleeper, nothing her sister dishes out to her seems to wake her from her slumber.  She spends more time dreaming away while Katelynn is off exercising her limbs.  Daria is also very quiet, to the point where Jenn-Jen and I were concerned about the development of her voice.  It was reassuring to learn that some babies take quite a while before their cries become more audible.

During my evening visit, the girls’ nurse and I talked about their personalities at some length.  I often wonder if what we are seeing with the girls right now will correlate with how they may turn out in the future.  It will be so incredible if we see their current traits translate into their development from infant to toddler to child.  Seeing how active Katelynn is, one of the fears I am trying so hard to fight off is whether she will be afflicted with any sort of physical disability that will leave her body unable to express her wishes and emotions.  The closest situation I have been in that can even remotely relate would a time when I was in a dream-like state, part way between being conscious and unconscious.  My mind was telling me to wake up, but my body simply would not respond.  The feeling was quite terrifying and I would not wish it upon anybody.  I imagine those afflicted with disabilities such as cerebral palsy go through such torture, and I pray that neither of the girls will have to go through the agony.  Only time will tell, but until then, we continue to keep the girls healthy development in our prayers.

The following scripture provides me with a gentle nudge from God, telling me Katelynn and Daria are truly in His warm and loving hands:

For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful.  I know that full well.  My frame is not hidden from you when I was made in the secret place.  When I was woven together in the depths of the earth, your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be.

Psalm 139:13-16 New International Version