There are still times when I take a second or two to simply marvel at the fact that David is even alive, here with us on this Earth, breathing and eating and growing. Everything else is wonderful icing on a delicious cake – his almost-words, his wobbly standing up, his giggle when Daddy is tickling him. For the first six months of his life, I’m not sure we even considered all these things might occur.
Speaking of icing and cakes, this is what Simon chose for David’s cake (he is the designated cake-picker-outter of the family):
Quick summary of David’s birth, which I suppose I will devote a page to someday, if I ever get around to writing it:
David joined us on 3/28/2010, after a somewhat-hurried but not-quite-an-emergency C-section. I did not have an amniocentesis during my pregnancy, but our high-risk OB told us at 26 weeks that she no longer needed one to be confident that he had Down syndrome – there were enough physical markers on the ultrasound. My pregnancy was closely monitored for the next 6 weeks; the main concern was that David was not growing well because there was a problem with the blood flow through the umbilical cord. Near the end of the 6 weeks the problem had gotten worse; he had dropped from the 10th percentile, size-wise, to the 4th. I was admitted to the hospital for 2 days of continuous monitoring, then sent home for 2 days, to come back every day for monitoring. On my second day of outpatient testing, the problem (temporarily improved by steroid injections) had returned. The doctor asked how long it would take my husband to get to the hospital (he’s a pastor and this was a Sunday; thankfully my sister was with me). When I reported it would take a couple of hours, she said, “we can wait that long.” And she did wait for him to get to the hospital, but then she started the incision before he was in the operating room. That had to be deliberate, right? I mean, you don’t accidentally start delivering a baby without the father being in the room, especially when you were waiting for him in the first place? I didn’t really think about it at the time, but later I took this to mean that David was in some serious trouble and needed to come out pretty quickly. Fortunately one of the nurses got Matt in right after that.
So David was delivered (2 lbs, 13 oz, 15.5”) and I didn’t get to see him – I knew this was a possibility but I was still disappointed. Matt got one picture:
When he came over to show it to me, he was excited because the neonatologist told Matt he didn’t think David had Trisomy 21, because David’s eyes didn’t appear to be slanted or whatever, and he was missing this crease in his palm that most babies with Down syndrome have. When the cardiologist (not his regular doctor, but the one who was covering for the weekend) came to see me in Recovery, she said she didn’t think he had Down syndrome either, I remember thinking, we’ll see.
David was a patient in the NICU for 92 days. He gained weight very slowly and had two back-to-back infections, the first of which was fortunately pretty mild, the second of which … there was one night in particular (age 6 weeks or so) we didn’t think he was going to make it, and about 5 days of significant worry afterward. But he eventually began to get better, and about 6 weeks later we went home. We had multiple medical appointments for the next 6 weeks (that number seems to keep coming up), until his open-heart surgery in Atlanta.
When David was 3 or 4 days old, we received the results of the genetic testing that conclusively diagnosed Down syndrome. I have written about this on David’s Caring Bridge page, and will provide more details later. The news was not a surprise – I believed, deep down, that he had it – but it was still not a great conversation, as you likely understand.
The last two years have held a lot of fear and worry, but also great joy. David is doing quite well, and has been for some time. His brother Simon is turning out to be a great big brother, about 97% of the time. I’m still enjoying being a full-time mom, and after a year of “staying at home” we are not totally financially ruined, so I guess I’ll keep it up for awhile. Much gratitude to everyone who has followed our story and has provided encouragement and support – it means a lot.
Brief photo summary:
In the NICU, day one, about 5 hours old
A couple of days later (no, a 2 lb 13 oz baby is not the smallest baby in the world, but this guy is small)
13 weeks later - we are finally headed home!
1st birthday
The day before his 2nd birthday - you probably can't tell but the paper he has chosen to pull out (of this drawer of old stuff from undergrad and grad school) is the Cycle of Domestic Violence (I volunteered at a shelter for awhile).
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