29/1/17 – Day 47
Arlo’s now happily settled in at Telford. Yesterday was a long, tough day and the transfer ended up taking around 6 hours in total in the end. It was much harder on him than I expected, much harder on all of us than I expected tbh!
First of all it took 3 attempts to sort out a cannula so he could have a glucose drip in the ambulance. First one stopped working after 20 minutes, second attempt initially flushed but then stopped working before the drip was up and he eventually ended up with one in his foot.
Once all that was eventually sorted off we went and he was fine for most of the journey then just as we got into the car park at PRH they had to stop the ambulance because his sats had plummeted. Sorted himself out quickly and off we went up to the NNU. He’s still in ICU, and we met his nurse at the door and were taken to his space, a space which we happen to know was once home to a very special little one. Then there was lots of paperwork to do and we went through his full history.
Now by this point Arlo hadn’t been fed since 1:30 (feeds are stopped for the journey), he’d been poked and prodded with needles all afternoon, he was in a strange new cot, he was facing the wrong way and his beloved boundaries were all wrong. Safe to say he was pretty pissed off with the whole thing. So he decided he wasn’t going to play ball anymore and if no one was going to give him milk then he wasn’t going to breathe. His heart rate and sats once again plummeted, we heard the dreaded words ‘mask and bag ready’ and he ended up having to be resuscitated.
I know I might sound like I being a bit flippant above but to be completely honest this has really shaken me up. That’s why it’s taken me until now to post an update. I couldn’t have talked about it last night or this morning.
I think I found this episode particularly upsetting for two reasons. Firstly, the people who have always picked him up and brushed him off before weren’t there. No familiar faces that have reassured us so many times before, who know how much of a diva Arlo is and know exactly how to handle him. Should add, his new nurse and Dr were brilliant with him, perfectly calm and soon got him sorted out. It’s just frightening being somewhere new though, even without something like this happening. And secondly, it made me remember just how delicate he still is and how quickly he can go downhill. I realise I’d built up getting to Telford in my head to be the point at which everything would be okay. But it isn’t. He still has a long long way to go. And hopefully I won’t have gone completely grey by the time he gets there!
The good news is he had a really settled night and a nice quiet day today. Resting and recuperating ready to continue his adventures. One thing we definitely can say for our boy, he certainly knows how to make an entrance!
27/1/17 – Day 45
Another good day for our little Superbaby. He now weighs 1210g, his cpap has been turned down to 6cm and his oxygen is between 30-40. He was even well enough to come out for cuddles today. Daddy got to hold him for the second time ever, the last time was 6 weeks ago! The Doctors are really pleased with him and have decided he’s now ready for the next big step on his journey. So as soon as a space becomes available Captain Arlo will be flying off to Telford NNU. A little closer to Mommy & Daddy and a little closer to home…
We did think he’d be transferred today but after spending the night psyching ourselves up it turned out Telford don’t have a space for him, and it’s unlikely they’ll have one until Monday at the earliest, so we’re on stand by but it’s unlikely to happen this weekend. That’s fine by us tbh. Six weeks ago we were absolutely desperate for this day to arrive. Now it’s finally here we’re actually quite nervous about leaving New Cross. We’ve gotten to know and trust the Drs & nurses here and, more importantly, they’ve gotten to know Arlo (He’s the oldest baby in the ICU now!). The care he’s received has been beyond amazing, they have literally saved his life (on more than one occasion!), and we’ll never be able to thank them enough. We’re excited to take the next step but we’ll be very sad to say goodbye.
25/1/17 – Day 43
We’re having a brilliant day so far. Arlo has made it back on to CPAP! Doctors switched him over during the ward round this morning and so far so good. Had a blood gas done about an hour later, and though not amazing, it was ‘good for Arlo!’ 😁
Also, HE’S WEARING CLOTHES! For the first time ever. The charity Pop ‘N’ Grow were kind enough to send us this beautiful little incubator vest 😍
Oh and, he’s 6 weeks old today! 🎈 Six weeks on the toughest, scariest emotional rollercoaster ride of our lives. He’s worth every single second
24/1/17 – Day 42
Another mini milestone day, Arlo is 31 weeks corrected today! Weight as of this morning is 1190g which is *just* shy of 2lb10oz.
He’s almost back up to full feeds now and today he’s been so much more settled than the last few days. No proper desats while we were with him today, in fact he was showing off and saturating at 100 for a while this afternoon. Such a difference from a few days ago.
Today he tried a dummy for the first time. It’s the cutest little dummy I’ve ever seen, so tiny! The plan is to give it to him during feeds so he starts to make the association between sucking and milk going into his tummy, preparing him for when he’s eventually ready to try feeding directly!
The brightest incubator in the NICU for our little bird. Everyone loves his blanket 🍄🌈🍎
22/1/17 – Day 40
Much better news today. Arlo’s infection markers have come down, he’s still on Bipap but his breathing is much more stable now, his tummy is back to normal and his feeds have been restarted over night (just 1.5ml an hour for now).
On Wednesday his long line into his leg was removed as he no longer required a TPN (intravenous nutrition). The Doctors now think he has an infection in his blood that got in via the long line. It’s pure luck that the long line was removed when it was otherwise things could’ve been much much worse, he’s incredibly lucky! He’ll stay on antibiotics for a few more days but hopefully he’s over the worst now.
I’m still poorly so not allowed to visit today but on the plus side that means I get to spend some time with our big boys and Daddy is doing a brilliant job of providing updates and helping with cares 💛
20/1/17 – Day 38
I shouldn’t have mentioned that chink of sunshine through the trees. Today we’ve been scooped up and plonked right back into the middle of the forest.
Our boy isn’t well today. He’s had multiple desats & bradys and hasn’t been able to bring himself back up without help. Around lunchtime his belly ballooned up and he started vomiting, quickly accompanied by another bad D&B so the decision was made to put him back on bipap to try and avoid re-intubation. An X-ray showed his bowels are quite loopy so he’s nil by mouth for now while the Doctors try and work out what’s going on. He’s already on antibiotics and they’ll be keeping a close eye on him overnight. Seeing him so poorly and knowing there’s nothing we can do to help other than hold his hand and silently beg the universe to keep him safe is so so hard.
Please, once again, keep your fingers crossed that this is just a bump in the road for Arlo. Here’s hoping for a peaceful night and better news tomorrow.
19/1/17 – Day 37
Bit of a mixed bag today. Arlo had his ROP (retinopathy of prematurity) screening. No sign of ROP so that’s great news. His TPN has been stopped now as he’s pretty much on full feeds of 7.5ml an hour which is brilliant! He had quite a few desats and bradys this morning, his temps been a bit up & down and his bloods showed that his crp is up which could mean he has an infection brewing. He’s been started on 2 types of antibiotics as a precaution but as he’s not really symptomatic they’ve sent blood off for testing and we’ll just see how he goes.
The rollercoaster continues. We’d had an amazing few days so a down was inevitable really. Fingers crossed its just a mini dip 🙂