So, after almost a week in the hospital, we are home. Lis's eyes popped open, and after a few more tests, we were free to go. Just like that. With no supervision. I felt like a criminal, sneaking out of the hospital, or maybe a dog that is leaving without a treat (ie, a nurse), slinking away.
On the other hand, I was glad to get the hell out of the hospital. As much as I love Riley Children's Hospital, as much as they did for us, and as much money as we are probably going to donate to them from here on out--there's only so long I can sleep (or not sleep) in a recliner.
Lis is still Lis. She looks like herself more and more every day as the swelling goes down. I have paranoid panic attacks every three hours or so when I look at her incision, convinced that infection is setting in. Yes, of course, I've already called the NP twice. It doesn't make me feel any better that she knows exactly what spot I'm talking about, because it was a point of concern to watch for them. Ugh.
Anyways, it was a good thing our pediatrician noticed this so soon, it was a good thing she referred us, it was a good thing that they got us in so quickly, it was a good thing that we did the surgery as soon as we did. If we hadn't, it would have been ugly. Things got much worse between Lis's original diagnosis and the surgery. It made things "hmmm... how should I say this? Interesting." in the words of our pediatric neurosurgeon. It would have been much closer to impossible if the surgery had happened later. Lis would have certainly been showing symptoms soon of increased inter cranial pressure.
In other words, we did the right thing. In other words, I am terrified in retrospect.
Her cry is a little different--she sounds desperate and scared when she cries. I assume this is because she is in pain, although we are managing the pain as best we can. She's afraid of the dark, which I assume is because her eyes were swollen shut for five days. She's afraid of her diaper changes, and I have no idea what to assume about that. My amazing sleeping baby is not so amazing or sleeping anymore.
But every day, she's a bit less scared and a bit more Lis. She's rolling around, she's sticking her tongue out, she's belly laughing at the dog. She's here. A few more weeks, and we are out of the infection scare zone.
I noticed over the last month or so, I've been getting a ton of google hits on craniosynostosis. At some point, I will put together the whole story experience in several parts, and then advice (from my experience) for parents. I know it helped me immensely to find other blogs of people who went through it. I th8ink I should return the favor.
Our Best Highest Selves
2 days ago