After riding a wave of ‘ups’ over the past week, it is now apparently time for us to go back to experiencing some ‘downs’. Though we’ve all been rooting for him, Reid unfortunately had to be reintubated Thursday afternoon, as he was completed tuckered out from five long days of breathing on his own. On Wednesday during my visit, Reid stopped breathing and actually needed to be bagged manually by the nurse to get his oxygen back up, which was a clue that he was starting to have trouble. It happened again a few more times yesterday, which led to him being put back on the ventilator . While we knew that chances were high he would probably need to revisit the vent at some point (Madeleine also had to be reintubated for a while after she got tuckered out from her first CPAP stint), and while it is still pretty great that he was able to come off of the ventilator for a little while, it was still a rather sad setback.
As if that weren’t enough of a wallop, we also got news yesterday after Madeleine’s weekly head ultrasound that her ventricle size has actually started increasing again by 1-2mm. This was definitely not something we saw coming at all, given that her last ultrasound showed a decrease, which seemingly suggested that things were getting better. We had a good chat with Madeleine’s doctor today, and the current sense is that there isn’t enough good data yet to figure out what’s really going on. Was the latest ultrasound incorrect in showing an increase? Or was last week’s encouraging ultrasound the incorrect one? Could the measurements actually be fluctuating and maybe still need to level out? Could the CPAP helmet be throwing off her head growth? At this point, it looks like the only option is to wait and see what happens, and go back to praying that the numbers start to go down again. If things don’t improve, surgery might be on the horizon again, and either way we have to also consider what this could mean for Madeleine developmentally as she grows, given that her brain tissue may have been damaged.
Even though this is all feels pretty grim, and while we won’t know for quite a while what we’re really in for in terms of the twins’ futures, we were reminded today by the neonatologist that there is still a lot that we can do to try and influence the babies’ outcomes – and right now, that namely means lots of loving cuddles. That was music to our ears of course, and both Reid and Madeleine came out of their incubators for snuggles today (Madeleine actually got two cuddles, but shh, don’t tell Reid). We hadn’t really realized just how valuable skin-to-skin time actually is to the babies’ growth and well-being, but now we will definitely be making a point to clock as much quality cuddle time as possible.