I got cuddles with both my girls today. C seemed to be much more stable – her breathing was pretty regulated. I’m guessing that they may even move her down a notch on her breathing assistance if she continues. B had another rocky day and her heart rate was constantly lowering, and she was “desatting” – which means her oxygen was down. It did seem to get better in the afternoon with more caffeine, so hopefully she doesn’t require more breathing assistance than she already has.
C also had another brain scan and although the report I read didn’t sound that great, I was assured on rounds that all was stable. I was hoping for a miracle or some kind of mistake. But that was unrealistic – the bleed has caused injury and that’s not going to heal. The best case scenario going forward is that it doesn’t get worse, and we’re told it hasn’t. I feel like I still don’t really have a sense of what it means, maybe because each doctor messages it slightly differently. We’ve been told “outcomes are variable”. Some have told us with certainty that this will impact on her in a serious way, and others have said that it may not or may be subtle enough that it isn’t visible “on the playground.” As a parent, it’s really easy to dwell on and fear the worst case scenario, but I think over the past week we’ve become more optimistic. We’re going to discuss it more with another doctor, although sometimes I think I’d rather just live in ignorance if they can’t offer any concrete insights into how this will go.
One of the NICU catchphrases you hear is “Hope for the best, prepare for the worst.” But I don’t really think there is anyway to prepare for the worst, so I’d rather just hope for the best, even if ‘the best’ is a bit of a moving target.