14/3/17 – Day 91
3 months old today and 38 weeks corrected! 🎉
Latest weight: 2.577kg/5lb10oz
Look who’s wearing their first non ‘prem’ standard sleepsuit (we’ve just tucked the pesky arm in!) I think his weight is a little deceptive because this it ‘up to 5lb’ and fits perfectly 🙂
Today was first immunisations day. He was due them 5 weeks ago but had been too poorly. He was really brave and only cried a little, bless him. Also, I changed his stoma bag for the first time today! It’s harder than it looks and will definitely take a bit of practice I think. Daddy’s turn next time!
I think when I last updated Arlo had just restarted feeds after a month pretty much nil by mouth. Well that’s been going surprisingly well, better than the surgical team expected in fact and he’s very almost at full feeds. He’s on daily weigh ins at the moment and feeds are worked out based on 160ml per kilo per day, so when he started feeds 30ml every 2 hours would’ve been full feeds. However based on his latest weight full feeds is now 34ml every 2 hours so even though as of this afternoon he is on 30ml every 2 hours, the goal posts have been moved slightly so he’s not quite at full feeds yet.
We’ve been so wrapped up in ‘will the stoma work this time’ that we’d not really asked what to expect after surgery, or what the longer term plan was. It’s all been about seeing what would happen once he started on milk. So yesterday we spoke with both the neonatal consultant and then one of the surgeons and surgical nurses.
The consultant explained that their main plan for Arlo at the moment is to try and wean down his Optiflow to eventually move him onto low flow nasal oxygen. He’s in 6L of high flow oxygen at the moment and still needs oxygen of around 30-45% so they won’t wean down to 5L and so on until he’s needing less oxygen. He said once Arlo is on full feeds and tolerating them they can remove his cvl which is the line they use to deliver his TPN (feed/nutrients that goes directly into he blood). Feeding wise though they have to be led by the surgical team so we spoke to them next.
The surgeon and surgical nurse explained that because of the position of Arlo’s stoma they’re not actually expecting him to tolerate full feeds as he grows and the amount increases. They think once he reaches a certain amount his output will become too high for him to absorb enough nutrients and he’ll continue to require TPN. With this in mind when he does reach an age/stage that he’s ready to be discharged from the neonatal unit he won’t be coming home, instead he’ll be transferred to Birmingham Children’s Hospital until he’s ready to undergo reversal surgery.
As for reversal, there’s no set time scale of when that might be but because of the extent of the damage caused by the NEC the surgeons would like to leave things for as long as possible before attempting reversal so his intestines get as much of a chance to recover and grow as they can. They’d also like Arlo to be in the best shape possible for surgery so bigger, on less breathing support etc. Things that mean they’d attempt it sooner would include if the stoma became very prolapsed, if he stopped gaining weight from his milk/TPN or as the TPN can damage the liver (you may have noticed his slight yellow hue!) if the liver became quite badly effected.
Lots to take in really but none of it actually too surprising. I mentioned that I’d been saying I’m aiming for xmas and anything before that would be a bonus and they said that was a good way to look at it because we are certainly looking at months, not weeks.
That all looks very bleak written down but we knew we wouldn’t have him home anytime soon, if I’m honest I’ve been flinching a bit when people have said to me ‘he’ll be home soon’ because he won’t. He won’t be home soon. Its okay though because let’s face it there have been times, many times, when we weren’t sure we’d get to bring him home at all, or that he’d even make it through the next hour, and frankly I’m still terrified every single day because I’ve seen things change in an instant but as scary and difficult as things are I’m trying really hard to remember how lucky we are to even be at the point where we’re talking about a plan for the future. Some people aren’t so lucky.