18/6/17 – Day 187 – Fathers Day
‘Fatherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be and that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be.’
I think this photo is a perfect example of a Fathers love. It was taken when Arlo had NEC. We were absolutely exhausted at this point. Running entirely on adrenaline. Arlo wasn’t making any progress. He was ventilated, on a lot of morphine, his whole body had swollen up like a balloon. We couldn’t hold him, could barely touch him without him desatting. The only thing that seemed to offer him any comfort was having a hand on his head. So even though his arm ached, and he hadn’t slept properly for weeks, that’s what his Daddy did.
Wishing a very Happy Fathers Day to my husband. An amazing Daddy to all 3 of our boys. We’re very lucky to have you, and we love you more than you’ll ever know 💛
17/6/17 – Day 186
So our calm, no messing weekend plans went out the window before 10am. Arlo’s losses for yesterday were ridiculous so he had to have a cannula put in this morning. It took a few attempts and tonight his foot is a bit swollen so the drips been turned off and it needs to come out. He needed 80mls replacing but he’s only had 22mls.
36 hours approx. until surgery. Not that any of us are counting…
16/6/17 – Day 185
So this neck line, with its 7 jangly lumen that remind me of that episode of Friends when Monica had her out of control hair braided and then got tangled up in the shower curtain, the one he went to theatre to have surgically placed and stitched in less than 72 hours ago… Yeah he’s pulled it out. It’s gone. Little monkey.
He removed the dressing and had to have it redressed 4 times yesterday, even though he had gloves on! And this morning he decided it had to go. He didn’t quite manage to fully remove it himself but it was too far gone to leave in. So no TPN now. Back to full feeds. The surgeon looking after him has decided to just give him as settled a weekend as possible before his big surgery on Monday. No new line, no cannula, no fluid replacement unless he goes majorly over, oral antibiotics instead of iv. Just his oxygen and sats monitor. I think that might have been Arlo’s plan all along! 🙃
14/6/16 – Day 183
6 Months old today 🎉
Current weight: 4.3kg/9lb7oz
(I feel like I should write *something* to mark today and I have lots of people I need to reply to from yesterday but today has been loooong so I’m going to get some sleep while I can instead! 😴 Will catch up tomorrow!)
13/6/16 – Day 182
He’s back. All went well. He came off the ventilator with no problem and screamed the place down. I think Recovery were quite pleased to send him back to the ward 😄
Neck line looks pretty gross (I’m a bit squeamish, I hated his last one too) but it’s working beautifully I’m told.
His milk feeds have been halved now and he’ll have TPN (intravenous nutrition) put up later. Hopefully this will bring his losses down, help him absorb his milk better and put a bit of weight on him before Mondays surgery.
He’s decided this is the only place he wants to be right now, which is fine by me 🙂
Thank you for all the well wishes etc, always a great comfort to know people are rooting for him 💛
The things that make you happy when you’re an ex 25 weeker superhero. A nice clean stoma bag and a good old wrestle with your favourite toy, your oxygen tubing 😄
No trip to theatre for Arlo today after all. The last operation overran slightly. He’s on the emergency list for tomorrow morning though so recommencing nil by mouth first thing and fingers crossed 💛
12/6/17 – Day 181
Big news. Big scary news. 2 lots actually.
Firstly, Arlo has a date for his stoma reversal. His output is still too high so it’s been agreed that it’s best to attempt reversal now. Monday 19th June is the big day. It would have been sooner but because of his chronic lung disease/oxygen he’ll need a bed on PICU for afterwards, which is always difficult to get so putting him on the emergency list for this week could’ve meant he’d end up being nil by mouth for days.
I don’t really know how to feel about it yet. If it goes well, then amazing! If it doesn’t though…
Second thing. The surgeons want to try and get a picc line in first so he can start TPN now and reduce his enteral feeds and see if that lowers his output, which should help for the reversal. He’ll need to be put to sleep for this though and there’s a possibility he may go to theatre this afternoon, if they can squeeze him in. We won’t know for sure until later.
Oh and yes, the pesky hat is back. His cannula went (again!) in the night and despite a few attempts for elsewhere it had to go in his head in the end. He doesn’t seem too bothered thankfully and he’s been beaming at everyone this morning 💛
Will try to keep you updated…
11/6/16 – Day 180
Happy to report Arlo is feeling much better today! Here he is grinning at his Daddy yesterday 😄
After my last post he went downhill quite rapidly. He’d been started on flucloxacillin in the morning, that was quickly changed to Co-amoxiclav, then Meropenem as he got worse. He was initially treated for sepsis then the Drs suspected pneumonia/chest infection. By afternoon his heart rate was 220, dangerously high, and his breathing was fast and laboured. Amazingly he was still holding his own saturation wise. In true Arlo style though he waited until the critical care team had arrived and then started to desat just as they were coming into the room.
It was absolutely awful watching them bag him. I’ve seen it be done countless times but it’s different now. Months ago we could think ‘ok, it’s awful but this is what premature baby’s do sometimes’. Now, well now it meant he was really poorly and it was horrible.
Thankfully that was the only big desat he had. His antibiotics were quickly changed, he had some more paracetamol and he had a bolus of fluid too and within an hour or so his heart rate had settled down, not quite his normal but much better, and his breathing was much more settled. He had a chest X-ray and a Dr from intensive care was asked to come up and check on him. It was one of the Drs who had looked after him on PICU before, when he had NEC, and he remembered Arlo (and Sammy. It’s the beard!) so that was nice. He was happy with him, and Arlo pretty much just slept for 12 hours after that. I didn’t though! I stayed awake all night to keep an eye on him, still tired now!
Yesterday he’d perked up so much that his surgeon said he was certain it wasn’t a chest infection because he was far too well, plus no cough etc. The blood cultures then came back saying it was a staph infection so septicaemia caused by staph getting in somewhere, possibly via his cannula site… Maybe. Guess we’ll never actually know for sure though so we should just be grateful he’s okay now.
His antibiotics got changed back to flucloxacillin once the cultures came back and he’ll stay on those for a few more days now but fingers crossed that’ll be the end of it 🙂
25+1 weeks in & 25+1 weeks out today.
I wasn’t going to post one of these today after all because, well it’s not the nicest picture for today is it… Cannula in his head, sleeping through whatever it is his little body is doing battle with this time. Then I thought actually, that’s exactly why I should post one anyway, because what’s the point in censoring the scary bits. It’s happening and Arlo’s fighting with every bit of that tenacious spirit that he’s shown us time and again over the last 25 weeks and 1 day. I think thats a worthy milestone 💛
P.s sorry I haven’t replied to anyone yet. We really do appreciate all of your lovely messages of support. He gave us all a bit of a fright earlier with a heartrate of 220 and a patch of desatting so I just haven’t had a chance. He seems a little more comfortable now though thankfully.
P.p.s People we know through various neonatal units/hospitals; Look! I did used to brush my hair and wear make up and look like a human, rather than a slightly haggard, permanently exhausted creature from the crypt (only fatter, obvs) 😄