Forwards again - off the ventilator, but very grumpy

Adam was taken off the ventilator on Monday and is doing fine on the next level down of breathing support.  He's been really grouchy today and yesterday though, which is probably due to him having reflux, which will be giving him heartburn.  They've put him on some new medication to try and help with that, but it had yet to kick in today.  I'd also like them to try him back on the "Optiflow" breathing system that he was on before getting the infection (which seems to be clearing with antibiotics, though is probably not quite gone), but they won't until he's been stable for a bit longer and until they've seen whether the reflux drugs are doing anything (fair point - the golden rule of science is not to vary more than one thing at the same time, after all).  I had a nice long cuddle this afternoon which initially soothed him, though he got grumpy and started losing oxygen saturation at the end.  Mind you, when I was changing out of my hospital robe, which you wear to preserve your modesty during "skin-to-skin", he managed to projectile poo all over the nurse changing his nappy.  Given that I would have probably have been doing the nappy, had I not been getting dressed, I am rather glad I missed it (and was missed by the poo!)  but do hope that part of his grizzling was the discomfort of pressure building up to the volcano eruption.  We'll see, anyway.  He's lost weight the last couple of days, presumably due to being on reduced feeds around being put on and off the ventilator, and from wasting energy grizzling for the best part of a day and a half.  While skin to skin was lovely today, I did feel a darker undertone - that "normal" cuddles with your baby don't involve constant glances at a monitor to see whether their oxygen levels are dropping dangerously low, and being worried that if you slightly shift your position, or that of the baby, they'll stop breathing. I really want normality and when I inadvertently step out from the "day-by-day" mentality that is required to survive the neonatal unit, I realise what a long way we are from reaching it.  We really need him to grow and get big, strong, and rather less vulnerable.  Once again, go Adam, go!

Adam's growth chart, aged 33 + 6 weeks.