October 8, 2008 to October 28, 2008 – Nine Months and a Problem of Disproportionate Scale

The perception of time is truly paradoxical.  Most of my waking hours seem to disappear into some temporal vortex, leaving me drained and perplexed at where all the minutes in the day went.  Inevitably, a string of events or unexpected news grinds this false sense of accelerated time to equilibrium, and then the whole process repeats.  As I come to the realization that I have not provided a journal update in nearly three weeks, the feverish pace of my day-to-day responsibilities and the corresponding fatigue falsely leads me to feel as if only a day or two has passed.  There is much to catch up on, so I shall begin by wishing our sweet Katelynn and Daria a very happy nine month birthday!  It is hard to comprehend that our angels have been with us for three quarters of a year now, and even more awe-inspiring is the amazing progress they have made from the initial projection that each of them would only have a fifty percent chance of survival.  Our Lord has made the girls into the fighters they are and I try to remind myself of that fact each day as they continue to grow stronger. 

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

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

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

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

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

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

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

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

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

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