Just when you start to get comfortable and think everything is going fairly well, something comes up. A couple of weeks ago, PB had a fever. Since she's still pretty new, I ended up taking her in to the Children's Hospital urgent care. Turns out she had a UTI, which is kind of a big deal on its own for a baby as little as she is, but it wasn't the only thing we found out.
One of the first things the doctor said when she came into the room pretty much changed everything for us... "Has anyone ever said anything about her head?" Um, no. We thought her head was shaped a little funny, but no one ever said anything about it, so we figured it was just the way it was going to be, everyone has different shaped heads, you know? Well, the doctor went on to say that we should really follow up with a neurosurgeon, because there's this *rare* thing where the bones in the head fuse before they are supposed to. "But it's probably not that, because that's really rare."
This rare condition is called craniosynostosis. It occurs in approximately 1 in 2200 births. Just about the same frequency as the birth defect PK2 had. And yep, PB has it. What are the odds of that? What it means is that PB's sagittal suture is prematurely fused, so her head is growing mostly front to back, rather than around. She's also getting a bit of a point to her head at the top. And it will only get worse, as her brain continues to grow.
What's it mean? Well, she will most likely need to have surgery to remove a portion of her skull along the suture line. That way her head can re-shape and grow the way it is supposed to. Surgery. Something we never thought we'd have to do again with one of our kids. There is a slight chance that she won't need surgery, but because of how her condition has progressed so far, we are pretty pessimistic about the likelihood of that.
The good news is that, thanks to the wonder of the internet, there's a good bit of support available for families going through this. There wasn't nearly as much support around when we were going through our gastroschisis journey (although there is now, thanks to Avery's Angels), so I am really grateful for this. The other good news? We've already been down a road like this before. We've gotten really experienced at dealing with doctors and hospitals and surgery and all of it. We've already gotten her in to see the neurosurgeons at one of the local hospitals, and she has an appointment soon to see the doctors at the other local hospital for a second opinion.
We're dealing with a lot of discouragement right now... the idea that a few weeks ago, we had a normal, perfectly healthy baby, and now we have another baby with a birth defect is a difficult one to come to terms with. I know that I am struggling with why God chose us to go through this, and why it seems like God always chooses us for bad things to happen to... not that good things don't happen to us, but it definitely seems like we get more than our share of bad. That could be a whole post on its own though...
