15/5/17 – Day 153
Car seat challenge done and he passed with flying colours!
15/5/17 – Day 153
Car seat challenge done and he passed with flying colours!
14/5/17 – Day 152
Our first night rooming in with Arlo! Thought now might be a good time for a bigger update.
So oxygen first. When Arlo returned from the children’s last week the Consultant had looked at his sleep study and it wasn’t as good as they’d been hoping. It showed his sats sitting quite low whilst asleep and the odd desat/brady. So he was put straight back onto low flow oxygen at 0.1 and that’s what he’ll be coming home on.
Feeds wise. He’s now upto 180ml per kilo per day, and still wanting more, little piggy! He’s also piling on the lbs now which we’re all very pleased about after his weight being static for a good while. This might be partly because his jaundice level is now pretty much normal (yay!) so he’s absorbing fats better, but also because he’s back on his oxygen now and that helps with growth. He’s now very comfortably in Newborn clothes (apart from Next clothes which have to be 0-1 month, because they shrink terribly on a 60 wash). He’s also allowed breast milk again now so we’ve started with one feed a day. It’s not been easy so far but I’m hopeful we’ll get there and it’s so lovely to be able to alreast try again 🙂
We had a MDT meeting on Thursday with everyone who’s involved in his care. It was really helpful butlso a little bit emotional. To have gotten to this point, after how unwell he was… Well, t was a big day for him, and us. Discharge has already been pushed back slightly, which we’re absolutely fine with. After this long on a neonatal unit you really do learn to not pin your hopes on dates too much because stuff changes so quickly, it’s better to just try and go with the flow (faaaar easier said than done, I know!). He does need his eyes checking again before we go home, and of course there’s still the possibility of surgery so we need to bear that in mind too.
Anyway, rooming in. For those not familiar this is a bit like transitional care. The neonatal unit here have 3 ‘flats’ and you stay with your baby and care for them as you would at home. I did this with Rowan before he came home but we only needed one night and I basically just sat and breastfed him all night and then we went home in the morning. With Arlo everything’s a bit more complex so we’ll do more than one night and we’ve got a sats monitor in here with us as he has to have intermittent monitoring (we’re bringing a sats monitor home with us for us for this too) and he has various drugs (including some at 2am!) so we have to get used to giving those.
It’s very exciting but a bit nerve racking too. Fingers crossed for uneventful night, well there has to be a first time for everything right!?
To all of the wonderful nurses who have taken such amazing care of Arlo over the last 5 months, Happy International Nurses Day!
To the nurses who were so kind to us in his first few weeks, when our whole world had been turned upside down, who took the time to talk to us after every single ward round and make the stark terrifying things the Drs had no choice but to tell us sound just a little bit less frightening. Thank you. To the nurses who endlessly encouraged us and gave us the confidence to care for our tiny boy around his lines and tubes, and who understood without any kind of judgment the times when it was all a bit too overwhelming and we needed them to step in and help us. Thank you. To the nurses and nurse practitioners who patiently answered the same question 30 times just to reassure me, because even though they’d explained it perfectly well the first time, my brain had managed to turn it into something terrifying again 10 minutes later. Thank you. To the surgical nurses who have taken such amazing care of Arlo I couldn’t even begin to explain how grateful we are, and who have just been so so patient when teaching us how to care for his stoma, and given us the confidence to do so when there was a time that I just couldn’t ever imagine being able to. Thank you. Thank you for the many many hugs and the seemingly endless supply of tissues and shoulders to cry on. Thank you for the laughs, of which there have been many. Even in the darkest, most trying and difficult moments you held us up, made us smile and stopped us from sinking. Thank you for your kindness and compassion, to Arlo, to us and even to his big brothers. Thank you for celebrating every tiny milestone with us and reminding us of them during every setback. To be honest, thank you will never be enough for what you have done for our family and we’re more grateful than we could ever say.
So here’s to you all. Happy international nurses day, and of course from the bottom of our hearts, thank you
#InternationalNursesDay #NewCrossHospital #TelfordPrincessRoyalHospital #BirminghamChildrensHospital #BirminghamWomensHospital
12/5/17 – Day 150
I started writing this update 4 days ago. It’s going to be a bit mammoth now so I’m going to split it in two 😕 Have to start though by saying a huge thank you for all of the lovely messages in response to our news about home, we so so appreciate the amazing support we’ve had over the last 5 months 💛 I don’t know where I am update wise. Eyes first I think. So last Thursday Arlo had a routine ROP screening (retinopathy of prematurity; when the retinal blood vessels do not develop normally in babies that are born prematurely. It can cause a serious loss of vision if it isn’t diagnosed and treated early). ROP is diagnosed in 4 stages. Stage 1 & 2 don’t usually require treatment but stage 3 & 4 usually do, and it has to be done quickly. The optometrist diagnosed Arlo as having stage 3 ROP and after that things moved very quickly. We were in an ambulance and on our way to BCH before we knew it.
He was admitted to the Neonatal Sugical Ward and prepped for surgery. He was nil by mouth from 3am and had 3 sets of drops put in ready for the surgery. However when the Eye Guy (not his official job title) came to get him he decided to have one last look, and based on what he saw he asked a colleague to come and have a look too. They both agreed it’s definitely stage 3 however at this point, with Arlo being practically geriatric by Neonatal standards, they didn’t think it was actually going to progress any further and therefore decided surgery wouldn’t be necessary at this stage. I’m not going to pretend I have a thorough knowledge of this, eyes freak me out, but my understanding is; that at the moment just his peripheral vision is affected and the surgery stops the damage going further, but it doesn’t restore the vision that’s already been affected so IF things aren’t going to progress further by themselves then surgery wouldn’t have any particular benefit really.
So almost exactly 24 hours later we were back in Telford as though nothing had happened! He was due his next examination today but the Eye Guy who does the Telford clinic is away this week so on Wednesday Arlo had yet another ambulance ride to hospital number 5, Stoke.
This was the first time I’ve stayed in the room for a ROP screening and I wouldn’t be in a hurry to repeat the experience. It’s such an important check up for premature babies but it’s a horrible procedure. I understand why he’s always exhausted and a bit unwell afterwards now, poor thing. His eyes will need to be examined weekly for the foreseeable and he may still need surgery but hopefully not.
Anyway, onto more interesting things… will post update number 2 shortly, all about ‘The H word!’
6/5/17 – Day 144
20 weeks & 3 days old. 5 weeks corrected. Arlo has some news…
Song shamelessly pinched from Pampers but I thought it was quite fitting for their campaign with Bliss as he’s definitely proof of the #powerofbabies!
5/5/17 – Day 143
So, erm, no surgery after all! Will update properly later but he was prepped and ready to go and they changed their minds at the last minute. Doesn’t mean he definitely won’t have it, but definitely not yet, and hopefully not at all. He’ll be rechecked next week. Good news, I think!
Hopefully back to Telford asap!
4/5/17 – Day 142
I think one of the hardest parts of being the parent of a premature baby is just how fast things can change.
This morning we walked onto the unit looking forward to hearing the results of Arlo’s sleep study and wondering if this time next week we might be home. Then we heard the dreaded words ‘could we have a chat in the other room’ and once again we find ourselves down the rabbit hole.
Arlo had an eye screening this morning. They found stage 3 ROP in both eyes. He needs surgery at Birmingham Children’s Hospital asap. Things have moved extremely fast this morning and the transport team should be here any minute to take him to BCH.
He’ll be admitted to the Neonatal Surgical Ward and is booked to have his surgery at 8am tomorrow morning. He’ll need to be ventilated for the surgery and immediate recovery so after the surgery he’ll go to PICU just until they can extubate him I think. We’ll know more once we get there.
We’ve just run around like mad people grabbing clothes from home, sorting childcare and stuff for the boys etc and now I’m expressing quickly before we go so I thought I’d write an update and get it all out a bit.
I’m so sad and scared for him, he’s already been through so much. We just need to keep going though and focus on getting him through this next hurdle. Will update as and when…
3/5/17 – Day 141 – 20 weeks old today! 🎉 First sleep study in air. Arlo’s been on a different monitor since this morning and will stay on this one for 24 hours. This monitor will record his sats and then the Drs will download them and decide if he needs oxygen for home or not 🙂 PS. Twenty weeks old! When did that happen!? 😱😱😱
2/5/17 – Day 140
Latest weight is without deductions I think so I need to double check that later, he’s definitely over 7lb now though!
Home very much on hold for the moment unfortunately… Tricky things first. Arlo’s weight gain had been static for the last week so his milk was changed on Wednesday to Infatrini Peptisorb. He had his first bottle at 12pm and at 4pm I took 51ml out of his stoma bag. That’s about how much usually comes out in a whole day! So not good. He’s allowed to lose 25ml per kilo, per day. Which for Arlo is roughly about 80ml. Anything above this needs to be replaced via iv fluids. Obviously he quickly went over this but he was given another day to see if it would settle down. It didn’t. Friday his total output was over 120ml so he’s had to have a cannula put in and he was on a drip until Sunday. He’s also had his milk changed back to Pepti Jr and that seems to have settled things down quite a lot. Good news is his losses have settled back down over the last 24 hours and the fluids turned off so hopefully that cannula can come out later.
Other very good news is that he’s out of isolation! All of his swabs since he arrived here have come back clear, no serratia! I’m so pleased about this. Knowing he will be having surgery soon and was carrying a ‘superbug’ was making me really anxious plus it means he’s out of the intensive care bay and in bay A with a bigger cot with a mobile and his lovely sensory lights. And, really really good news…
Arlo’s been on lots of meds for ‘conjugated hyperbilirubinemia’. His last full blood count 2 weeks ago showed his levels were 103. Well this week we’d all been saying he looked less yellow. The nurses who’d not seen him for a few days could see a real difference and sure enough his levels from his most recent count have come down to 30! Still need to come down a bit more but 30 is brilliant! He’s also still mostly managing without oxygen at the moment, although if I’m totally honest I’m not convinced he doesn’t need it, he sits at 89/90 when he’s asleep. He’s having a sleep study today or tomorrow though hopefully so we’ll see and then we can try and get back on track for discharge…
The other very exciting thing about being out of isolation is we get to do things like this 😁 Yesterday we went for a little stroll round the unit for the first time in their pram (he couldn’t go in it before because it’s for all the babies and infection control). Arlo loved it! 😁 He’d been a bit grumpy because his feeds have been lowered and he’s hungry but he went straight to sleep. It felt so strange to be in the parents room with him, but so so lovely 💛