Posts from — November 2007

As if having the DS wasn’t enough to deal with — and we are dealing, somewhat, a little more and better every day — there’s also the not-so-small issue of the heart hole that needs to be tackled. Somebody needs to talk to whoever’s in charge of this biodesign crap and tell them that if you give a kid trisomy 21, you’re not allowed to mess with anything else, though we’re considering ourselves pretty lucky that Archer didn’t have to go immediately into surgery after birth, as many DS kids do. As for his heart, officially, the hole is called a VSD, though that “defect” word riles a bit, and after an appointment with a not-so-scary cardiologist on Wednesday, we found out that we’re on a pretty short timeline for it to fix itself if it’s gonna…otherwise, it’s open-heart surgery time, probably in late January/early February.

Which is some scary shit right there, let me tell you, the thought of your three-month-old kid having his ribs opened up and his heart stitched.

There’s not really a whole lot we can do to make it better — it’s frustrating that, unlike some kind of outer wound, we can’t see the progress (or lack thereof) as time goes on, but we’re keeping hope alive that it will indeed fix itself, as it still could — there’s a valve that’s right next to the hole that could deposit fibers around the hole to make it smaller and maybe even eventually close. But if that doesn’t happen — and wow, but we’ve been hitting all the crappy odds lately — then surgery will be the order of the day. And at least then it’ll be fixed and we can move on/get back to the “normal” baby stuff again. Though I’m quickly learning that there is no “normal,” in babyland, no matter what kind of kid you have.

Additionally, because of this heart issue, today we had to give the little man a very expensive vaccine-like shot, called Synagis, which will hopefully help protect him a bit from this RSV infection thing — at the price, it damn well better — and keep him healthy until the heart is fixed in whatever way it needs to be.

Doctor appt. days are always hard, though today was the best we’ve had so far– I consider it not so bad if Amy’s not crying on the way home, and we hit that mark for the first time today. And it always helps after just to look at him for a while. So on that note, here are two of my favorite pics from Thanksgiving:

I love the “who the hell is holding me now?!?” look he’s got here (for the record, it was me):