Day 77 part 2

I have about 3 inches of roots, my skin is drier than the desert and my eyebrows are threatening to take over my face but who cares, LOOK how we’re seeing out the month from hell! We’ve waited a long long time for this. It was worth the wait 💛

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Day 77

28/2/17 – Day 77

36 weeks corrected today 🎉 and…

HE’S OFF THE VENTILATOR!!

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Still can’t quite believe it but not only is he off the vent he’s totally skipped BiPap/CPAP and he’s on Optiflow nasal oxygen! And he’s doing brilliantly! He’s so much happier, here he is gazing up at his Daddy, probably wondering when he’s going to listen to his Nannies and shave that bloody beard off 😂

I’m going to do my usual ‘it’s only been an hour and if he gets tired he may go backwards etc’ but for now… He’s off the ventilator, doesn’t seem real, and yes there were tears.

So he was intubated on Feb 1st and now extubated on Feb 28th. Let’s hope that’s a good sign for March. Oh, and if he’s still happy this afternoon we might just be getting that February cuddle after all…! 

Day 76

27/2/17 – Day 76

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Look at that perfect little face 💛 It occurred to me today that I haven’t held him even once this month. My baby is 11 weeks old this week and I’ve only held him 3 times in his entire life.

The last time we held him was 27th January, his last full day at New Cross, and what a brilliant day it was. We’d had a bit of a rough week and had reverted back to being a bit apprehensive with him, it honestly seemed as though every time we got a bit more confident with him something went wrong and we were scared to even touch him, not this time though.

With help from the lovely nurse looking after him that day (thank you Amy 😊) the three of us did all of his cares, he was even breathing well enough to have his CPAP mask off his nose and perched on top of his head while we washed his little face and did his mouth care. We dressed him in his first tiny romper and then out he came of his little house and we got to spend the next hour or so cuddling our boy. Daddy first and then it was my turn. It was amazing and considering what happened next I’m so glad and so grateful that we got that perfect afternoon with him.

Here’s hoping we’ll be back to that stage very very soon, until then though I’ll settle for holding his tiny hand and looking at this perfect little face 💛

Day 75

26/2/17 – Day 75

Two days post surgery (I think… he went for surgery Thursday evening and didn’t come back until early hours Friday so I’m not sure how to count it yet?)

He’s stable. Oxygen and vent rate are down a bit. Blood gases are okay and he’s much more active today, not really awake but wriggling around a lot in his sleep. He’s still not happy with handling and desats if he’s touched but I think that’s to be expected after major abdominal surgery.

Today big brother Reuben has been to see him. He brought a special book with him to read to his baby brother, it was very sweet 🙂

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So, update. Arlo was in theatre for over double the length of time this time round. We were okay for the first 2ish hours but after that every second felt like a week. We finally got the phone call to say he as out around 1am. The Doctor gave us a rough overview of what he’d had done but told us the surgeon would speak to us in the morning.

We sat down with the surgeon on Friday and he explained he’d had to go straight home when they were finished because he was exhausted. He said things were much worse than they’d expected and it wasn’t just a singular issue, there were 3 different problems and it’d been a very difficult job.

Firstly, they found a stricture near the opening of the stoma so that was pulled through slightly and refashioned. The second much more time consuming problem was that the small bowel had multiple ‘extensive’ adhesions. He described the small bowel as being essentially ‘frozen’ because it was so stuck together. They’d had to spend a long time picking it apart. The final issue was one none of us were really expecting. During the first operation the surgeons hadn’t had to touch the colon at all, they’d noted that it looked a little inflamed but this time they found that unfortunately a few areas have necrotised (died) as a result of the NEC. The surgeon said he’d been unable to remove them during this surgery as he believes had he attempted to do so, Arlo would almost certainly have bled to death.

Further surgery will be needed at some point to remove the areas of dead colon but for now he didn’t seem to think it would cause any immediate issues and he said full rest to allow it to recover as much as possible is the best thing for everything down stream of the stoma at the moment.

He told us very clearly that Arlo’s recovery will be very long and progress will be very slow. He will require further surgery and it’s also possible his ileostomy may be permanent. He said the damage the nec has caused is extensive, amongst the worse cases he’d seen and that this was the most difficult surgery he’d carried out in the last year.

The last 72 hours have been a bit of a whirlwind and it’s been a lot to take in and try to get our heads around. There’s so much I haven’t included in this update because I’d be here for hours but suffice to say, our feet have barely touch the ground since Thursday. We were transferred back to the Women’s NICU last night and now the dust has started to settle I have about a million questions ready for when we see someone from the surgical team tomorrow, I’m not entirely sure I’m ready to hear the answers though. I’m terrified the stoma won’t work, like last time, and really worried about further adhesions.

We’ve just got to keep everything crossed and hope for the best now. Arlo’s still fighting and we owe it to him to do the same. I don’t think I can find the right words to express just how proud we are of him or how blown away we are by the way he’s fought through every obstacle placed in front of him. I know I’m biased but almost everyone who meets him falls in love with him, his determination and fighting spirit are infectious, he’s a very special little boy and we’re so so incredibly lucky to have him 💛

 

Day 72… Cont.

Arlo was taken down to theatre about 45 minutes ago. We don’t know how long the surgery will take because it all depends on what the obstruction is. Not gonna lie, already crawling the walls. As ever all prayers/good thoughts very much appreciated x

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Day 72ish

23/2/17 – Day I have no idea, 72?

Will try and do a fuller update later but for now, we’re in the ambulance on our way to PICU at Birmingham Children’s Hospital. Possibly surgery today, we won’t really know until we get there. We’ve very kindly been given 2 more little bears for our collection, one each for Reuben & Rowan, from the amazing Kids & NTS team. Can’t sing the praises of this service enough btw, they’re fantastic! Will update as soon I can.

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Day 71

22/2/17 – Day 71

10 weeks old today! As he’s now in a cot I decided we had to celebrate with a new blanket, couldn’t venture home for one of the many beautiful blankets we have but managed to find this one. Not quite a rainbow but close enough for now! 🌈

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Another tough day. The surgeon came to review Arlo this morning. He feels that he does have a blockage/stricture/kink/something, he’s not sure which just yet but he feels that they now need to take him back to theatre and see what’s going on.

He doesn’t think it’s a further nec as his crp is normal and he doesn’t think it’s another perforation as his blood pressure/oxygen etc is stable-ish (just don’t touch him!) so that’s at least something positive.

Obviously we’re beside ourselves with worry and even the thought of him having to go through more surgery is enough to make me start retching (apparently my body thinks the best way to deal with high stress is vomit myself inside out and then fall asleep. When the zombie apocalypse comes it’ll be no use hiding behind me 😐) but this is what he needs so it has to be done and we have to stay strong for him and just get him through it as best we can.

The only other problem is, there’s still no beds in BCH PICU. The surgeon said this morning that he feels we can wait 24 hours but of course there is a risk of perforation so we can’t wait any longer than that. The transport team are waiting for him, the anaesthetist is aware he’s coming and the surgeon has just rung for an update but there’s just no bed. So we have until tomorrow morning then we’ll have to go further afield.

Will update as and when…

Day 70

21/2/17 – Day 70

35 weeks corrected today!

Latest weight 1.969kg. We’ve just come back from grabbing some food and almost had a panic attack when we walked in and Arlo’s incubator had vanished! Now he’s almost 2kg and maintaining his own temperature he’s graduated to an open cot! 😊

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As predicted, yesterday the surgeon came to see him and decided it was time to drip some milk in and see how it went. Unfortunately it hasn’t really gone well. He started on 1ml every 2 hours. He only managed 4ml before his belly got a bit bigger, aspirates returned to dark green and he vomited so feeds have been stopped. His rate on the vent has also had to go back up and his morphine.

The stoma still has a small amount of output so that’s good but it seems no one really knows what’s going on with Arlo. It could be a kink but because there is some output from the stoma they don’t think it is. His bowels could still be a bit inflamed and just need more time to settle down or worst case it could be another perforation.

Unfortunately it’s yet another case of ‘wait & see’. I’ll be honest I’m starting to really struggle with this approach. I know it’s all we can do for now but I feel like I’m teetering on a knife edge and running on constant adrenaline is starting to take it’s toll. Which then makes me feel guilty because it doesn’t matter how I feel, however hard this is for me it’s worse for Arlo, he’s the one going through it. I just wish I could do something to make him better.

Clinging on to the thought that one day, when he’s being cheeky with his brothers, this’ll all be a distant memory. I can’t wait. Fingers crossed tomorrow is a brighter day 🌈