Day 91

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.

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Day 84

7/3/17 – Day 84

37 WEEKS CORRECTED!! 🎉🎉🎉

What a milestone and as if that wasn’t enough we’ve had a whole day of amazing things! Firstly, we have a new weight. Drumroll please; 5lb exactly! He’s tolerated his milk overnight with no problems at all and now gone up to 4ml every 2 hours, he’s stayed on Optiflow with not a single desat/brady since the change and oxygen of around 30% and since yesterday he’s been off all post surgery antibiotics and all painkillers, he doesn’t need them now 🙂 Wait, there’s more. He’s GRADUATED TO HDU! After 1 day shy of 12 weeks in intensive care he’s now in high dependency. In his very own little side room 😁 He’s decided to celebrate all of this by snoozing all afternoon!

It’s still very early days with the feeds and it’d be daft not to expect a few stumbles backwards but this is much much further than he got after the first surgery so we’re off to a good start 🙂

He’s about to have his 3rd ROP screening so fingers crossed for a little more good news to round off the day…

I still can’t believe he’s 37 weeks corrected. Term. It’s incredible. He’s incredible. I’m so so proud of him 💛 Now, the next milestone, is due date..!

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Day 82

5/3/19 – Day 82

Arlo’s at a key developmental stage now and had he not been so poorly we’d have been having a go at breastfeeding around now. Obviously with him being nil by mouth we can’t do that but it’s important we try to help him develop his suck so here’s Daddy helping him with a bit of ‘non nutritive sucking’ on his dummy 😊

Tomorrow is 10 days post surgery and as long as the surgeon is happy with him in the morning he’ll start having a bit of milk down his ng tube again. Probably just 1ml to begin with. I’m so nervous it’s unreal. This was the point at which we realised he had an obstruction last time so that’s niggling away at me. At the same time though a very small part of me is strangely excited. This is the next step, and if it goes well… I can’t even let myself think that far ahead 🙈 Fingers crossed though 🙂

*Edited to add* About 10 seconds after I posted that update Sammy came to tell me they’d decided to give him another try on Optiflow instead of CPAP. It’s been about 90 minutes and so far, so good… Just had a blood gas and it was ‘beautiful’ 😁

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Day 80

3/3/17 – Day 80

New weight! 2230g/4lb14oz! That’s almost 3 times his birth weight and the exact same weight his brother was when he arrived 7 weeks early.

Arlo has a new friend; Meet Kraken, Ken to his friends 🐙. Wednesday ‘Octopus for a preemie’ very kindly offered to send Arlo an octopus which is now on its way to us, however when I walked into his bay last night this little guy had appeared! We figured it’ll actually be quite handy to have one to alternate for washing though. I think he likes him, last night he was holding his tentacles against his face, it was so cute. This morning he gave him a bit of beating though so, it’s a love/hate relationship…

As you can see we’ve taken a little step backwards and Arlo is now on CPAP. Wednesday afternoon the nurse looking after him noticed he was working quite hard to breathe and the cute squeaky noise we’d been cooing over was actually quite a loud stridor, indicating his windpipe was a bit swollen, and he was struggling to get air in. Apparently it’s fairly common after extubation. So he’s had some dexamethasone (steroids) to help with that and he’s having a little rest on CPAP for a while.

His morphine has also had to go back up to 15mcg from 5. He’s been on morphine for over a month now and it was weaned down quite quickly this week ready for extubating but he’s been really unsettled, thrashing around and crying, so plan is to wean it a bit slower. Poor little guy, he’s much more settled now thankfully.

Not much else report really. His ng aspirates are lessening, although yesterday he brought up quite a lot of old blood but it’s likely just from the surgery. He does have some stuff coming through the stoma so even though it’s not much we’re hoping it’s a good sign. Still nil by mouth and the plan is to just leave him alone for now really, think he’s earned a rest anyway 🙂

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