30/3/17 – Day 107
Most recent weight 2777g/6lb1oz!
Updates get a bit confusing to explain to people at the moment because Arlo’s sort of under the care of 2 different teams. There’s his neonatal care and his surgical care plus nutrition which is tricky because of the ileostomy and so we have to kind of get updates from everyone and then they make a plan together of next steps etc.
So neonatal side first. Arlo’s still doing well on his low flow. Currently in 0.20 oxygen. He’s still in a Babytherm but we’re hoping to start turning that down a bit now. His boundary was taken away on his due date and he was a bit put out about that. He’s woken himself up flailing his arms about a few times. He’s really alert in between sleeping now though. Wakes up for a few long stretches during the day (and night!). His jaundice levels (from the TPN causing cholestasis) aren’t any worse and his colour is starting to improve slightly.
Surgical/nutrition wise; Arlo still hadn’t really been doing so well with his weight gain. He had quite a big loss when his TPN was stopped and his stoma output had been up and down. His recent stool samples have shown that’s he’s still not absorbing fats despite being on special milk and my milk 50:50. This meant there was no option really other than to put him fully on the special milk. I did ask about going 75:25 but the samples showed he physically cannot digest the breastmilk and it’s just pouring straight through the stoma into the bag. He is still allowed his 3 breastfeeds a day though so he’s still getting some breastmilk and it’s from source too so even better. I’m going to carry on expressing and all being well, once he’s had his reversal we’ll go back to ebm and eventually fully feeding.
Talking of feeding, we’re awaiting a feeding assessment at the moment because I’m almost certain he has a posterior tongue tie. His latch is shallow, clicky and chompy. He is managing to transfer milk but its far from efficient or comfortable for me!
Good news is he has actually gained weight the last few days! Big gains too. So we’re really hoping he is now absorbing this milk. Which leads me nicely on to the next steps…
Arlo’s stool samples will be repeated on Monday. If *if* he’s absorbing and gaining weight then, possibly, he could be transferred to Telford. He could then stay there until he’s ready for reversal. Or, if they come back that he still isn’t absorbing and weight gain tails off again, they’ll keep him here in Birmingham and start thinking about doing reversal sooner rather than later. As in, much sooner.
So, we’ve just got to wait and see. Luckily we’re well practiced in that now 😆