You’re 9 days old today so it’s going to be a while before you read this but though it best to “bring you up to speed” on stuff you’ll never remember (you know, man-to-man). Your mum has her photos and the memory box she’s putting together for you, oh yea, the nursing staff gave you that just before you left for hospital number two.
I’ve “flirted” with the idea of starting to write this a couple of days ago, when we found out that you really were quite ill, I mean like one in ten thousand ill, but out of everything that has happened over these last two weeks… (Oh yea, you were born six weeks early because your mum was taken into hospital with suspected preeclampsia (I got THAT text message AFTER finishing refereeing a volleyball game in Tamworth – even though the text was sent shortly after the game had started… Whoops)) … the thing that kicked this idea into action was the fact that I read you your first book yesterday ‘Blue Little Worm’ and I couldn’t console myself (yes, there may have been tears) about the fact that I was reading it to you in a neonatal unit and not in your Moses basket at home.
So, back to the beginning, 9 days ago, Thursday 19th May 2016, 12:04pm. I met you for the very first time. The instant love I had for you hit me like a speeding train the second I clapped eyes on you… You hear stories about “instant love” and “a love so great it hurts” but that doesn’t begging to describe what happened when I first time we met. I couldn’t even properly get the words ‘hello son’ out of my mouth before my face turned into a river (yes I know, again with the tears but really, that’s “okay”). You really weren’t happy about coming into the world, in fact, you were positively annoyed! The minute or two between you arriving and your mum and I seeing you were the longest of our lives. You were so content in there you even had a little bit of a protest ‘put me back… I’ll hold by breath until you do!’ The medical team won that argument and you were put on 30% oxygen. That didn’t last long though because by the time we got down to see you at 7pm you were just on normal air. This was the first indication of how much of a fighter you are (and we’d see plenty more examples of that over the coming week!
Each day we come to visit you, you managed to blow our minds and melt our hearts, you are such a content baby, except when it came to putting your CPAP mask on and you using your IV splint to bat the nurses away and pull it off… Or when you very subtly tried to wrap your arm around your feeding tube and pull it out… Oh yea, round about day 6/7 you started to open your eyes, you were so alert and attentive, taking everything in, so much so that over the last couple of days you have really started to recognise your mum and my voices! OMG how you fight to try and stay awake when you are in our arms… Well you normally do that with mum but you seem more content just sleeping in my arms… Cheers son, not sure if that is a back handed compliment or not, I guess time will tell 🙂
Day 10 – Sunday 29th May. Your mum was pacing the floor last night, she couldn’t sleep with worry… ‘about what’ I heart you ask, ‘my heart?’ Nope, you’re still in ICU but you were really stable yesterday. She was worried about your poo! Your aunty Nat spotted some dried on you leg when she came to visit you and your mum had to peel your nappy off because this stuck up snotty nurse wasn’t doing her job properly and tried to judge us on how we were doing ours… It’s a good job the car played up so I spent some time away from the hospital sorting it out but when I was holding you, you briefly grizzled because you were having a bad dream and she flew across the room towards me like I’d just done something unspeakably horrible to you. I “snarled” at her a little bit as I went into “prehistoric protective cave man” mode and she backed down, then she tried to make “nice” with us by … Wait for it… Reading another patients notes and getting our surname wrong – basically implying that your mum and I weren’t married… MISTAKE!!! Tell you what son, if you weren’t in my arms fast asleep I would have “sarcasmed” her to death and it would have been so subtle she wouldn’t have even known what was happening!
Anyway, back to today, we’re currently at home (don’t really want to be writing this while I actually by your side), just about to set off to the hospital, mum called ahead for an overnight update and the good news is you’re being moved from ICU (intensive care) to HDU (high dependency), you’re also being moved to an open cot rather than an incubator which is brilliant 🙂
Day 11: It was so good to see you in an open cot yesterday, just to be able to touch you and look at you without crouching down to peek through the hand holes in your incubator, yes there is the Perspex incubator which I can see you through perfectly but there is a big difference between the two: being able to hear you breath, being able to stroke your head (without bending my arm into all sorts of shapes and directions).
You had a lot of visitors today son, aunty Emma came to see you this morning (she not a “related” aunty but a really good friend of mine and your mums)… You have a fair few “aunties & uncles”, and even more people who would love to be your auntie & uncle. You’re kind of a little bit famous son… You’ve even had news articles written about you! Aunty Jenny & Uncle Kenny also came to see you this afternoon (uncle Kenny is your mum’s brother so they are actually relatives). There’s only three to a bed allowed so I was sat in the parents lounge writing this while they were here.
I fed you again (first time in this hospital), it was so funny that I had to basically pass a test to prove to the midwife I knew what I was doing… There was paperwork that had to be signed and everything. We left tonight very tired but reassured you were in good hands 🙂
Day 12: Your mum and I are having a “media blackout” day today, other than me writing this it’s just going to be the three of us. Agenda for today, get you weighed, fed, changed and cuddles in that order… Didn’t get any cuddles yesterday so really going to make up for it today, oh yea, and your mum gets observed so she can feed you as well … We may even do some more work on those facial muscles and developing that sucking reflex… Please don’t cheat today and just get the milk of the dummy then spit it out… That’s not how this is supposed to work! 🙂
So you’ve been weighed today and lost a little bit more… I still don’t quite think your brain has got the memo that your heart isn’t working properly!
Day 13: Okay, so I take that back. Looks like today your head finally did get the memo. When the consultant broke the news to your mum and I we both just froze. I don’t think I’ll ever forget that image – your mum sat on the chair next to your cot and me standing next to her. I can’t remember the last bit of what the consultant said but I kind of zoned back in when he asked ‘do you have any questions?’ I just shook my head and thanked him. I stepped out of the room to process what had just been said and next thing I know I was in the far end of the ward in the parents lounge messaging our family:
‘Why can’t this child of ours just be given ONE chuffing break!!! Resps hitting 120, pulse 170-190bpm… High flow up to 6 litres (moving him back onto to CPAP and talking about intubation), cutting his feeds by half and putting him back on IV glucose!!!
Seriously, what more can his young little life throw at him?!’
Your mum watched them put the CPAP mask over your little nose and this time you didn’t resist, she even said how well you did and how brave you were when they put your canular back in. We knew the doctors and nurses were making all the right decisions but it just felt so unfair considering how much you have fought already.
It’s been hard to hold onto/take away positives from today son, but the most important thing is how much time we spent with you, changing nappies and doing your feeds may not sound like much but we were “doing parenting” as much and as best as we could.
You’re such a little tyke, I can really see you being a night owl when you get older like your dad. Over the last couple of nights you’ve grizzled every time we’ve tried to leave as if you know we were going. Through the day this never bothered you when we went for breaks, as if you knew we were coming back, but at night you’ve really taken to trying to keep us there as long as possible. I’m not complaining son, I’m amazed, impressed and proud that you’ve got a grasp of your world so quickly 🙂
Day 14: I’ll not lie to you son, today hurts like hell. Minutes after the consultant breaking the news to us, this was the message that went out to the family:
‘Max is in heart failure, he’s having a long line put into either his arm or leg to directly feed him with glucose, calories, amino acids et al (TCP).The cardiac surgeon at BCH is concerned about him. He’s stable at the moment but things could either stay the same or get worse.’
I think my heart literally broke earlier on this afternoon when the doctor put the long line into your arm – I was stood at the other end of the ward (about 60 meters away) when I heard you cry out in pain. It was horrifying! Like a knife in my chest, out of no where I could have collapsed to the floor. Of course I didn’t but it took about an hour to get my head back together and come back in to see you. So the shit has hit the fan. It’s going to be an even longer journey in hospital. You lay there sound asleep in your crib while I sit next to you just trying to get my head around the last 48 hours.
Day 16: Didn’t manage to make an entry yesterday
25/01/2018: It’s been a long time since I wrote on this I know… It’s not that I haven’t thought about it; when you had you cardiac catheterization (a year ago today), every time you have been in hospital (pnumonia for instance)… There have been loads of reasons why I haven’t: Who am I writing this for, me or you? – If the answer wasn’t ‘you’ I didn’t write. What would any of your future brothers/sisters have to say about it? – ‘does dad love you more than he loves me because he wrote this for you but hasn’t done one for me?’… The categorical answer to that is of course I don’t love any of you (how ever many children your mum and I have) any more or less than Max, I’m just writing this to try and help him understand (and take ownership) of something that is very ‘unique’ about his heart.