14/5/17 – Day 152
Our first night rooming in with Arlo! Thought now might be a good time for a bigger update.
So oxygen first. When Arlo returned from the children’s last week the Consultant had looked at his sleep study and it wasn’t as good as they’d been hoping. It showed his sats sitting quite low whilst asleep and the odd desat/brady. So he was put straight back onto low flow oxygen at 0.1 and that’s what he’ll be coming home on.
Feeds wise. He’s now upto 180ml per kilo per day, and still wanting more, little piggy! He’s also piling on the lbs now which we’re all very pleased about after his weight being static for a good while. This might be partly because his jaundice level is now pretty much normal (yay!) so he’s absorbing fats better, but also because he’s back on his oxygen now and that helps with growth. He’s now very comfortably in Newborn clothes (apart from Next clothes which have to be 0-1 month, because they shrink terribly on a 60 wash). He’s also allowed breast milk again now so we’ve started with one feed a day. It’s not been easy so far but I’m hopeful we’ll get there and it’s so lovely to be able to alreast try again 🙂
We had a MDT meeting on Thursday with everyone who’s involved in his care. It was really helpful butlso a little bit emotional. To have gotten to this point, after how unwell he was… Well, t was a big day for him, and us. Discharge has already been pushed back slightly, which we’re absolutely fine with. After this long on a neonatal unit you really do learn to not pin your hopes on dates too much because stuff changes so quickly, it’s better to just try and go with the flow (faaaar easier said than done, I know!). He does need his eyes checking again before we go home, and of course there’s still the possibility of surgery so we need to bear that in mind too.
Anyway, rooming in. For those not familiar this is a bit like transitional care. The neonatal unit here have 3 ‘flats’ and you stay with your baby and care for them as you would at home. I did this with Rowan before he came home but we only needed one night and I basically just sat and breastfed him all night and then we went home in the morning. With Arlo everything’s a bit more complex so we’ll do more than one night and we’ve got a sats monitor in here with us as he has to have intermittent monitoring (we’re bringing a sats monitor home with us for us for this too) and he has various drugs (including some at 2am!) so we have to get used to giving those.
It’s very exciting but a bit nerve racking too. Fingers crossed for uneventful night, well there has to be a first time for everything right!?