Day 107

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 😆


Day 105 – Due Date!

Day 105 – ARLO’S DUE DATE! 🎉

Another magnificent milestone and he seems quite pleased about it too! 😊

Fifteen long weeks ago this day felt completely out of reach. I couldn’t imagine how we’d ever get here and so many times along the way we almost didn’t.

Happy Due Date our beautiful Arlo River. How far you’ve come, and how much further I know you’ll go 💛


Day 103 – Mothers Day

26/3/17 – Day 103 – Mothers Day

As lovely as it was to spend the night at home last night, I was so happy to get back to this little face this evening. As well as his lovely squishy little face, I was also greeted by 2 beautiful cards, some chocolate and a little crochet heart (and a leaking stoma bag and poo everywhere, thank you very much Arlo 😂). Big thank you to the nurses, Libby Mae’s Little Angels and Bliss for the cards and gifts, so kind & thoughtful 💛 (not the exploding bag of poo though, that was all Arlo’s own work!)

We had planned to bring Reuben & Rowan to the hospital today and spend the afternoon all together but Rowan woke up with his 50th (actually only a slight exaggeration!) cold of this year so that put a stop to that plan. Not to worry though, it might not have been quite what we planned (story of my life!) but we managed to have a special day anyway and, there’s always next year 🙂

Happy Mothers Day to everyone celebrating today. I don’t know about anyone else but motherhood is frequently absolutely nothing like I imagined and I seem to spend the majority of the time feeling like I’m only just keeping my head above water. When I look at our funny happy little gang though, all things considered, I don’t think we’re doing too badly at all. And to anyone else who finds themselves just winging it and hoping for the best; you are not alone! #WingingItAndWinning



Day 101

24/3/16 – Day 101 – One Hundred Days Old! 🎉

Now, we’re not telling him for obvious reasons, but…

Arlo’s on low flow! 😱 How good is that!? 😁

I walked in this morning to find a lovely card one of the nurses had made for him. Full of little messages and congratulations from the staff on the unit. Made me cry, obviously! And then I realised something was different. Noticed his Optiflow was unplugged and started to panic, then realised what that meant, and cried even more! 😆

He’s had a lovely fews days. Last night he finally had his first bath, which he actually seemed to quite enjoy! Also yesterday we got the go ahead from the Doctors to try 3 breastfeeds a day. Just 5 minutes at a time. They need to know his input really because he’s a surgical baby so I’m really happy with this plan for now, plus I expect teaching him to feed will be a slow process, it certainly was with Rowan and he was 7 weeks early so got going much sooner. The last few days he’s been gaining small amounts of weight so that’s good. Monday he’ll have more samples sent off to see how well he’s absorbing. He had another ROP screening and his is still at stage 2 so good news that it hasn’t progressed. The Optometrist said if it’s still at stage 2 on his next exam, which will be after his due date, it’s unlikely he’ll go on to need surgery so fingers crossed.

Happy 100 days little Captain Arlo, The Superbaby. We are so unbelievably proud of another milestone reached. 4 days until due date..


Day 100

23/3/17 – DAY 100! Technically 100 days old is tomorrow so double celebration 🎉

And LOOK WHAT WE JUST DID! After 100 long days Arlo has just had his FIRST EVER attempt at breastfeeding! 😁
(I am aware there is a little bit of boob in the picture, very tricky to take a photo of a tiny baby breastfeeding without capturing the booby and I have spent the last 20 minutes dithering about posting this but then I saw some of the awful stuff that has been posted on my newsfeed over the last 24 hours and believe you me, if seeing a baby being fed is the biggest thing you’ve got to be upset or offended about today then you should probably count yourself pretty damn lucky #sorrynotsorry).

Day 100

Day 98

21/3/17 – Day 98 – 39 weeks corrected today 🎉

Current weight 2.579g/5lb10oz (exactly the same as this time last week).

We’re having a pretty okay few days all things considered. Now he’s on Optiflow (now at 3L, next step is low flow!) and the long line is out it’s so much easier to get him out so we’ve been able to cuddle him as much as we like. This morning we spent an hour doing kangaroo care and Arlo loved being skin to skin. He is super strong though and was making us laugh by fully lifting his head up and looking around the room like a meerkat. Then once he finally lay his head on my chest he starting rooting like a mad thing. Had to make do with his dummy though!

Nutrition has been the main focus of the last few days really. Last week Arlo reached full feeds of 32ml every 2 hours and his TPN (iv nutrition) was then stopped. His weigh-in the next day showed he’d lost weight so some of his stoma output was sent off to check how well he was absorbing the nutrients. The results showed that whilst he was absorbing sugars, and some other bits I can’t remember, he wasn’t absorbing fats. Quite a common problem with the position of his stoma apparently as everything passes through quite quickly, too quickly to fully absorb nutrients. So it was decided between the surgeons, the dietitian and the Doctors to try Arlo with a special high fat formula mixed 50/50 with my milk.

To be brutally honest I was a bit sad about this. Not because I particularly have anything against formula, although I did breastfeed his brothers and I am inherently lazy so the idea of pissing about with formula scares me a bit tbh, but more so because when you have a premature baby there are so so many normal every day things that you’re unable to do for them. Particularly in the early days. You can’t hold them, cant feed them, can’t dress them, you can’t bath them (Arlo’s never had a bath, he’s 14 weeks old tomorrow!). You can’t make them better or take away the pain and discomfort of having blood taken every few hours or the medical interventions that are necessary to keep them alive. You can’t make it so that even something as natural as just breathing isn’t the hardest thing in the world for them. Worst of all, you couldn’t do what millions of other woman do everyday and keep them safe until they were ready to be born. And don’t even get me started on the guilt…

One of the only things I could do, just me and no one else, was provide milk for him. And now it turns out he physically cannot thrive on that milk alone so it’s yet another thing that I can’t do for him. Now please don’t get me wrong, I completely understand why he needs this and I will always always do whatever is best for him and for now this is what’s best for him. It just, briefly, made me feel a little bit sad that’s all. It’s not forever though and I’m still hoping I’ll be able to feed him eventually.

As it goes he’s still not gaining much weight (but a gain is a gain as far as I’m concerned!) and his output Friday and Saturday was far too high, so high he needed replacement fluids, and that won’t have helped but it does seem to be settling down now. It’s possible the infection might have made his output go up so we’re waiting to see if things settle down now the crp is coming down. Fingers crossed.

Arlo will be 14 weeks old tomorrow. Can hardly believe that. It’s a little bittersweet to think that if it weren’t for the NEC we could possibly have been preparing to bring him home now. Instead, the finish line is completely out of sight once more. Obviously we’re just very grateful he’s here at all though! Still fighting away, and that finish line can wait, we’ll get there eventually…


Day 94 & 95

18/3/17 – Day 94 & 95 because I started writing this yesterday and got distracted.

We’ve hit another little rocky patch unfortunately. Arlo has another infection. This time in his surgery wound we think. The surgical nurse and I both checked it Wednesday midday and it was perfect but by 5pm 2 little pus filled spots had appeared. We kept an eye on them overnight and 2 more popped up by morning plus the surrounding skin went quite red. So he’s been started on flucloxacillin and gentamicin. Also had a septic screen. Crp is 35 but as he had his immunisations Tuesday that could be playing a part in the crp.

Fortunately so far it doesn’t really seem to be causing him too much bother. He did have a pretty big desat Thursday down to 40 which scared the bejesus out of me but we think that may have been because of a loose connection on his Optiflow. Then later on he had a brady, which again terrified me. I was dressing him and he was wide awake then his eyes closed and his head just flopped to the side and oh it was just horrible but he’d just been disconnected to be weighed so possibly because of that and he’s been fine since so trying to not worry too much. Trying and failing obviously..!

We were moved rooms again Thursday. We’re now in Lavender (So far we’ve been in Iris, Orchid & Dragonfly) an intensive care room right back at the end of the unit. The furthest from the doors! We haven’t been moved because he needs intensive care though, it’s just because Arlo is isolated because he tested positive for serratia so he was on his own in a side room but there are 3 other baby’s who also have serratia so they’re all together in one of the intensive care rooms which frees up the side rooms.

Thursday night we had our first stoma bag incident. His bag got very full and fell off. Poo everywhere! We’d just been moved rooms and there was already quite a bit going on so I had to sort him out almost solo. I was pretty sure I’d done a crap job (lol!) but the surgical nurse checked it yesterday and said it was fine so 👍🏻

Today Arlo’s had another blood transfusion. His HB has been around 95 for a few days and though it didn’t seem to be causing him any huge issues it was decided he’d been on the low side for long enough really so hopefully this should give him a bit of a boost.

Breathing wise he has actually started to make some progress! Yesterday his oxygen requirement just, almost out of now where really, came down from 40ish to mid 20s and he stayed there happily all afternoon so his Optiflow was turned down to 5L to see how he’d manage with that. He’s been fine with it overnight and all morning so this afternoon it’s been turned down again to 4L and he’s STILL maintaining sats above 95 and is only in about 28% oxygen. This is huge for Arlo because he has Chronic Lung Disease and that extra month on the ventilator through illness really has not helped with that plus considering he has an infection and his HB has been low you’d expect his oxygen requirement to go up slightly if anything, as we know though Arlo really is Mr. Contrary Mary! 😄

There’s a few other nutrition/stoma related updates but this is going to be insanely long if I write about those too so I’ll explain about all of that in another post.

Last thing, today the long line in his arm finally came out! It likely won’t be out for good but it’d been in for quite a while now so needed to come out really and there’s the added bonus that I got to dress him in a normal babygrow today! One in tiny baby size that I’ve waited 3 months to finally put on him. I almost cried 🙈 I remember choosing this babygrow though, before he arrived, and day dreaming about dressing him in it. Feels wonderful to have finally been able to put it on him. Pictures are a bit rubbish sorry but look how gorgeous he looks 💛


Day 92

15/3/17 – Day 92

13 weeks old today and snoozing away in his Auntie Wren blanket 🙂 This was given to Reuben the day he was born and then passed onto Rowan and now Arlo. Makes me very happy to know all 3 of our boys have at some point been snuggled up in it