Day 199

30/6/17 – Day 199

He’s so beautiful 💛

Don’t be fooled though, this was taken after about 4 hours of being a total diva and making several unreasonable demands 😂

Arlo’s now on 20ml of milk every 3 hours and tolerating it well so far. Hopefully he can go up a little again tomorrow 🙂

His biggest brother Reuben is coming to stay tonight. Hopefully he’s got over his disappointment of last week at discovering Ronald McDonald House isn’t actually Ronald McDonald’s house… I think he was expecting to be greeted with a Happy Meal & a McFlurry on his pillow or something 😄

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Day 198

29/6/17 – Day 198

So, it seems removing the bag worked! Arlo’s aspirates were clear and minimal for all of Monday so Tuesday he was allowed to have his first feed for over a week. Just 5ml to start with every 3 hours to see if he’d tolerate it and he did so he went up to 10ml Tuesday night and he’s now at 15ml every 3 hours. His surgeon wants to go up slowly on feeds. Most likely twice, every other day. This is to give his bowel a chance to stretch and get used to it and hopefully avoid any setbacks.

I’ve just realised I didn’t actually update about how the surgery went. He was in for 4 hours this time, that was partly because of him having his broviac line put in though. The surgeon said it had all gone as expected. There were some adhesions they had to deal with and they’d had to remove his ileocecal valve which I had kind of expected but the biggest surprise to us was that they’d also removed his appendix! They had booked a PICU bed for him just in case but he came off the ventilator and went back onto his usual 0.1 of oxygen with no problem afterwards.

So now we just have to be patient while he climbs the milk ladder again and keep our fingers crossed for no major set backs.

He’s so happy to be having some milk again. Look at that little face.

Day 197

28/6/18 – Day 197

28 weeks old, 13 corrected.

Apologies for the lack of update, this is now probably going to be a huge update so I’ll split it into two I think. Recovery has been much tougher than we imagined and as usual nothing can just be straightforward and go well for Arlo! He was great for the first couple of days post op but then it all went a bit wrong and he’s now on antibiotics for a wound infection. The site where the stoma was has actually opened up 😷

The first few days after the surgery everything was going well. His gut seemed to be taking a while to ‘wake up’ after surgery but that’s fairly normal. Apparently it’s called ‘paralytic ilius’ and happens after any sort of abdominal surgery, even C sections! This means his stomach bile can’t go down and out so he had an ng tube which had a bag attached to ‘free drain’ and collect all the horrible green stuff that comes up and it’s also aspirated every few hours.

Thursday his aspirates from his ng tube had started to reduce and go clear which coupled with the small amount of dirty nappies he was having was a really good sign and we hoped he be able to start feeds soon. Then Thursday night his belly became badly distended, his aspirates went dark green again, the amount shot up and he was pretty much inconsolable for next 48 hours. I’ve seen him have a lot of unpleasant interventions over the last 6 months but this was easily the most distressed I’ve ever seen him. Intermittently writhing around in agony, bright red, sweating, shaking and screaming his head off. It was awful. He’d only settle with pain relief and being rocked in my arms. Sammy had had to go home to be with the other boys so we were alone for all of this and if it hadn’t been for another parent bringing me food I don’t think I’d have even eaten. Every time I put him down he went crazy.

I was really worried by Saturday night (I know I’m always worried 😂 but you know I’m really worried when I stop posting updates and go to ground). I’d already been on edge because of the complications he had after his first surgery and it was starting to feel a bit too familiar. The only positives were that he was pooing (green water, nice) so we hoped that meant he wasn’t blocked and his obs were all perfect. Then his temperature started to creep up…

One of the Surgeons came to review him around 1am Sunday morning and as soon as he took the dressing off the wound it was obvious what the problem was. I’ll spare you the details (and the photos) but it did not look good 😷 So he started iv antibiotics Sunday and he’s now having his dressing changed daily, wound cleaned, covered in honey and redressed.

By Monday morning he was like a different baby! Smiling away at everyone and very obviously ready for some food! Unfortunately his aspirates were still large and green though so no chance of any milk. That’s when one of the nurses suggested they could spigot the ng tube and see what happened. So basically take the bag off and see if that encouraged the green bile to go down rather than draining out. If it didn’t work we’d know because he’d likely start vomiting it up instead and if it did work, he could finally try some milk…

This photo is from Monday morning. He was so much happier after 24 hours of antibiotics! 😍

World Breastfeeding Week

Today is the beginning of National Breastfeeding Celebration Week.

Way back around Christmas time when everyone started making these breastfeeding tree of life pictures I remember being so sad that I couldn’t join in. I actually sat and cried in the car park at Bentley Bridge Retail Park. We can blame that one on hormones, I hope… Arlo was teeny teeny tiny still and I knew it’d be months before we might, if we were lucky, get the chance to try feeding (Little did I know it’d be 100 days before that finally happened!). I was bloody determined that I’d do absolutely everything I possibly could to get us there though.

So when he got NEC and spent an entire month nil by mouth I carried on expressing. When he restarted feeds and it became apparent that because of his stoma he couldn’t absorb the fats in breastmilk and would need Pepti Jr for all but one feed a day I carried on expressing. When long term pumping damaged my skin and caused 4 painful infections in quick successions I grit my teeth and carried on expressing. When his Dietician and Doctor told me as kindly as they could that his samples still showed malabsorption and we needed to stop giving him breastmilk altogether until his stoma output was under control I carried on expressing (and we got that single feed a day back almost a month later). And here we are at 28 weeks old, still expressing, and I finally have that tree of life picture now. He’s nil by mouth again, and when he does finally restart feeds it’ll be via his ng tube at first but I’m hopeful we’re closer than ever to getting there (wherever that is) now.

Maybe it’s partly guilt. I failed to keep him safe until term after all. Or maybe it’s just sheer bloodymindedness and the fact that when I really believe in something I’m a right stubborn mare, but either way I’m pretty proud of making it to 6 months. Exclusively breastfeeding is hard, I’ve done it twice. Exclusively pumping is brutal.

So here’s to all the breastfeeding mamas. Whether you’re able to breastfeed directly, you’re expressing every 3 hours to provide milk to be tube or bottle fed, or even if you spent time trying… this week is to celebrate you.

Also have to acknowledge the brilliant women who donate milk to help the tiniest premature babies who need human milk to grow and thrive in the NICU. You’re doing something truly amazing 💛

#CelebrateBreastfeeding

Day 190

21/6/17 – Day 190

We have nappy action! He has done a poo! His first pooey nappy in 142 days! Yay!!

Cannot tell you how excited and happy we were to see something as normal as a poo in his nappy! After the first surgery when he had complications and got bad adhesions/stricture etc, it just made it so hard to be optimistic this time. 17 long days we willed him to get better after his first surgery but it just didn’t happen.

So although it’s still very early days, we’re ridiculously relieved that things seem to be going in the right direction so far 😊

(Haha! I’ve just realised I didn’t explain the socks. To stop him pulling his Broviac or ng tube. I’m sure the parents of poorly babies already knew that though 😆)

Wow…

This is amazing! Arlo’s hand holding mine the day of his first surgery at 7 weeks old, weighing 2lb vs Arlo’s hand holding mine today before his 4th surgery at 26 weeks old, weighing 9lb!

Day 188 cont…

He’s back and somehow possibly looking more beautiful than ever 💛 Haven’t spoken to the surgeon yet but it’s done, it’s been reversed and his nurse said it went well. Hoping for a peaceful night now. I’ll update when we’ve spoken to the surgeon. Thank you all again 💛

Day 188

19/6/17 – Day 188

Our brave little Captain Arlo has just gone down to theatre. Wearing his lions for courage, not that he needs it, he’s already the bravest little thing and looks like he had no idea what all the fuss was about this morning! He’s having a broviac line and a laparotomy & reanastomosis.

The Broviac line is a long, thin, flexible tube inserted into the chest, used to give medicines, fluids, nutrients, or blood products over a longer period of time. This is for his TPN (intravenous feed). He’ll be nil by mouth for a while after the operation then his surgeon wants to go up on feeds really slowly, to gently stretch the colon.

The laparotomy is literally the surgical procedure of making a large incision through the abdominal wall to gain access into the abdominal cavity.

The main bit, the reanastomosis is basically the reconnection of his bowels, reversing the stoma and putting everything back together. Possibly also removing some bits of bowel that haven’t recovered from the NEC.

We don’t know how long he’ll be in theatre for, at least a few hours. I’ll update a soon as I can though. Thank you again for all of the good luck wishes 💛

The day before reversal…

I’ve been allowed to bring Arlo over to Ronald McDonald House Charities (RMHC) for an hour or so this afternoon for a bit of time just us before his big surgery tomorrow. He was very excited to leave the ward but has pretty much slept from the second we stepped outside! Still lovely to have a bit of time alone with him…