The Best Possible News for Today

We were told a couple of days ago that the Geneticist would be visiting Neriyah today. It would have been nice to have at least been given a window...you know like the cable guy or appliance repair folks give...instead we were told to stay nearby to ensure that we could come to the hospital on a moments notice.

I headed to the hospital for the 11 o'clock feeding. As I walked in the door, the nurses introduced me to Dr. Zadeh the Geneticist who had also just arrived. Wheww! Amazing timing. I was able to give her a family history, which she genogramed, as well as my health summary. She then proceeded to exam our daughter. I'm sure I was slightly awkward during this time as I was feeling anxious...uncertain whether to rock in my chair (to clarify it was a rocking chair...I wasn't quite at straight jacket levels of anxiety) or stand and watch. I finally settled on rocking and praying for wisdom and clarity for the doctor as she measured, scoped, and listened to our baby.

When she finished she told me that we could rule out Mosaic Down Syndrome. Our daughter does NOT have Down Syndrome. She went on to say that she was thinking of a few other syndromes that involve mid-line facial hypoplasia (a fancy way of saying our daughters nose is pretty darn flat). All of the syndromes that she covered with me she had reasons to believe that they were NOT good fits.

I had sent a text to Jeremey around 11:30 am to see if he was done preaching. Within 15 minutes he arrived at the hospital and was able to meet the doctor, get an update and ask questions. The timing of the day could not have been better. He clarified with the doctor that the syndromes on her short list do NOT involve mental retardation but rather involve skeletal issues.

The only areas of concern for the doctor at this time is waiting to see if Neriyah begins to feed on her own and maintains a good temperature. Currently, she is being gavaged (the central line goes into her stomach) for her feedings versus nippling a bottle. We are hoping she will be up to full-feedings soon and will be able to try a bottle again (they tried before but she tired out). Last night and today, Neriyah's temperature was also a bit low. Both of these areas are considered milestones and if met, we continue moving forward with little concern. If they are unmet, more testing will be done as these could be indicators of an issue in her brain that could be a result of small chromosome deletions. Testing for the small chromosome deletions requires far too much blood at this point which would compromise our efforts to see her grow and remain healthy.

Currently, our plan is to meet with the Geneticist again when Neriyah is 6-months-old to see how she is developing. We will stay on this path unless our daughter does not meet these first milestones of feeding and temperature regulation.

We know so many of you have been praying with incredible boldness. We ask that you would continue in this vain...we trust that there has been much healing already done that we will never fully comprehend. I think back to our delivery day and the words of the neonatalogist. She said to us, "She is likely Downs, given her eye spacing, lowered ears, and nasal structure. But there is always that 1% chance that she is not." We took 1% to mean that God still had room to heal. We're learning a great deal about not shutting God out just because "science" and "medicine" are involved.

We would love for you to pray for feedings and her temperature.

Much love,

The Kings