+ JMJ +
Dear family and friends,
Anastasia has now begun her second week of life and her critical stats — heart rate, respiration, oxygen saturation — are overall stable. Yesterday she was weaned off of breathing assistance altogether but today is back on very slight assistance (0.5L O2 @ 100% — for those who understand RT-speak). Considering we thought she would be on a CPAP for a week or more we’re still thrilled with her progress.
The biggest immediate concern is the level of sodium in her blood stream. The normal/acceptable range for sodium is a measurement number in the 120s or 130s (sorry — I don’t know the endocrinology-speak for what these numbers signify). Earlier this week, after being stabilized from her seizures, she was measuring in the 150s; with pharmaceutical assistance she’s now into the high 130s. The next challenge will be seeing if she can maintain that without better living through chemistry. And speaking of chemistry, baby Anastasia is still consuming bagged electrolytes but is now feeding on mommy’s milk rather than bagged lipids via IV, so that’s an improvement. She’s also begun non-nutritive breast feeding and is demonstrating the instinct to try to latch and nurse though she still needs to make progress on this skill. And on the theme of improvements, Anastasia is no longer on a specialized, heated NICU bed but in a crib!
Prognosis: the road ahead is long and uncertain. We know Anastasia will remain at the hospital for at least one more week but whereas a week ago we were accepting God’s Will that she might not make it out of the hospital alive we are now guardedly optimistic that she will be coming home in a few weeks to live and grow with her siblings… but there are still many unknowns. Despite coming up negative for Trisomy 13, 18, and 21 on the FISH test, it’s still the belief of the NICU staff that there’s an underlying chromosomal abnormality. One clear diagnosis is Holoprosencephaly (HPE) which has, in rare cases, been observed without any other identified genetic precursors. To paraphrase the doctors: Anastasia continues to throw puzzles at the biggest brains in neonatal intensive care in the region and show them just how much they don’t know about the pinnacle of God’s material creation.
Thank you again to everyone offering prayers, meals, and babysitting assistance — there’s no way mommy or I could spend as much time with Anastasia as we have this past week without your love and help! May God bless and keep you all!
With love,
Daddy and Mommy
And now for photos!
Her best Colonel Sanders impression:
A new outfit, stylishly worn (so her ID tag & O2 sensor can be accessed):
Another new outfit — and she’s looking to see who’s there:
