I’ve been meaning to do a more robust Cora update for a while, since I know I’ve been a bit vague about it.
We were told Cora had brain bleeds (intraventricular hemorrahages if you want to get specific) when she was five days old. We don’t know exactly how it happened, but it was almost certainly related to her ruptured lung and the events that followed.
The bleeds were monitored closely, and caused permanent injury to two areas of her brain. That injury will always be there, at least when you look at a scan. But how it will affect her is a huge unknown, because infant brains can rewire. I remember seeing what the doctor wrote in her files, which I read diligently. It was something like “I informed the parents that there is a high risk of severe neurological impact, although I emphasised that outcomes vary considerably.”
During our six weeks in hospital we saw medical professionals at both ends of the “optimism” scale with some who were quite negative and others who were sympathetic but also told us not to worry so much. In short, things could be major, or they might be minor. What the likelihood is of her being at either end of the spectrum is something I was always too scared to ask. And of course, a large part of what constitutes “major” is quite subjective, depending on your own attitudes about disability. There are outcomes that might worry others more than they do me, and vice-versa.
Right now, C is like any other baby of her adjusted age, at least to us. I’d be lying if I said I didn’t think about IT a lot, but I certainly don’t worry about it as much. She feeds well, she recognises me, she does not seem stiff, she moves all her limbs, and she is feisty and alert. She is gaining head control and is able to push herself up and hold her head up quite well. Sometimes I notice subtle things – like she is stronger at holding her head up when looking left. As soon as I notice it, we start working on it in simple ways – calling to her from her right or encouraging her to feed with her head tilted that way. She is being monitored quite closely and when she’s four months adjusted she will have an in-depth assessment, so we may know a bit more then, although obviously again she will still be very young.
So for now, she is doing great. I write that, even knowing that I might jinx it, and even knowing that there is so, so, so much more that needs to happen before we have a sense of what life will be like for her and us. I’m not naive enough to think that her behaviour at one-month adjusted means we’re out of the woods. Not by a long shot. But at least for the moment, we can focus on enjoying her and on being positive. Which is a good thing no matter how it all ends up.