The NICU Experience

Max all ready to come home the following day from the hospital, six days post surgery.

Having done the whole intensive care, near death experience, multiple organ failure drama the first time round, we thought we were absolutely down with the fact that sometimes birth and the bit after don’t go to plan. We thought we’d become the poster children for ‘expect the unexpected’ and been there, lived it and came home with not only the t-shirt but the scars and dodgy hand and heart too.

But nothing, nothing can prepare you for the sight of your child being on an intensive care ward.

Luckily when I was poorly I didn’t have to look at myself. There are pictures of me from intensive care but they were very much during the ‘recovery’ phase and not the ‘might not make it’ phase of my time in hospital. So I’ll never know how bad or otherwise I looked (a doctor told me I looked like a corpse and most of the nurses completely didn’t recognise me when I returned four months later for a visit which gives me some sort of clue). Anyway I digress.

On his worst days in NICU, Max was ventilated which meant there was a tube down his throat, tape on his face keeping it in place and then a contraption with two thick tubes attached to a machine making all sorts of beeping noises. He had an NG tube which ran down his nose, a long line into his arm, various cannulas in his arms and legs, a blood pressure cuff, an oxygen sats monitor, ECG monitors on his chest, an arterial line attached to his umbilical cord and a mask on protecting his eyes from the light treatment he was receiving for jaundice.

Somewhere under all of that was our son. Our son who we’d barely got to see properly before he became entangled in a mass of wires and medical equipment. Our son weighing in at less than 5lbs. Our son who’d beaten the odds to even be born alive.

Somewhere under all that were our hopes and dreams that we could take this precious bundle home with us and get to know every crease in his hands and feet and every hair on his head. Somewhere under all that was our belief that things would work out okay.

When your child’s poorly, you don’t imagine the future very often (except sometimes when everyone gets excited and starts using the word ‘home’ only for something to go wrong and bring you crashing back down). You imagine that day, you focus on that hour and you just pray for stability. You pray you won’t be called at 2am or have the doctors come up to you with that worried look on their faces. You hold their tiny hands and wish for them to be stable enough to cuddle. You hope for stable because stable is the best you’ll get that day.

You find yourself laughing and joking with the nurses because there is literally nothing else to do and no one else to talk to. You enjoy every nappy change because it’s a chance to actually do something for your child who’s being essentially looked after by strangers. You sometimes realise you’ve sat in the same place for four hours without moving.

I had a couple of moments where I thought ‘why us? Why Max?’ But you can’t do that constantly. You would break. So instead you celebrate every tiny milestone and you smile and you talk constantly to your little tiny baby. Instead you stay positive in every update you send to family and friends.

The most heartbreaking moment for us on NICU was when the baby who’d been in the cot space next to Max in the room he’d spent a few days in passed away. I will never forget that day and the thought of being those parents. Of driving home in silence in a car with no noise coming from the back seat. Of going home to see all of the things you bought for a baby who will never ever see or use or wear them. Of the emptiness and the despair.

I can’t even imagine and I feel physically sick thinking about what those parents went though. That day made me realise even more that no matter what we went through with Max, as long as we took him home eventually we could get through it. Yes he’s been poorly but as I type these words he’s lay asleep on my lap looking to all intents and purposes like a healthy baby.

We are the lucky ones. Our son has the chance to grow and develop every day and whatever challenges he faces along the way, we know he can do it because he’s proved himself time and time again, fighting back so quickly where other little ones have taken much longer to get over the ordeals he’s faced.

I will never forget our time on NICU, PICU, the neonatal surgical ward and the children’s ward across three hospitals over Max’s first few weeks of life. I will never forget those parents who didn’t get to take their little boy home. I will always encourage my son (and his sister) to live life to the full, because we’ve been there and seen first hand that sometimes it doesn’t work out that way. Max has already made our hearts burst with pride at how strong and incredible he is. I will always look at him and think of all his fellow prem and/or poorly babies, what amazing little things they are.

Harriet, Alexandra and Max x

21 Months and 2 Months Old

I thought I’d combine a monthly update for both children, mostly as Max turned two months on the 26th and Alexandra turned 21 months on the 29th so we’d have two similar posts on the trot otherwise. Also because once she turns two I’ll probably do less frequent updates about Alex so it seemed to make sense to do it this way.

Alexandra:

This little one’s personality seems to be growing every day, she’s full of sass and is much too smart for her own good. We’re definitely experiencing the full force of tantrums now but on the flip side she’s also very loving and caring. She’s delightful with her brother and loves giving kisses to everyone, whether it’s us or her teddies.

Her vocabulary is expanding daily with new words including star, heart and circle (there’s been a new focus on shapes in our house!), blue, spoon and efforts to say Max, car (sounds like dar) and moo (she says boo instead!). We’ve been doing a lot of counting but that mainly involves shouting the number two which is her favourite number by far.

Alex is excellent at pointing out different objects, animals and people in her books and particularly enjoys playing with her farmyard animal matching game (they played something similar at nursery and the staff were very impressed with what a whizz she was at it).

She’s getting much better at feeding herself and eats 95 per cent of her meals without assistance. Fruit is still one of her favourite things, although strawberries have overtaken bananas this month as her ultimate fave. Alexandra had her first proper fringe trim at the hairdressers this month, has spent loads of time in the garden and at the park, has lots of new books thanks to both nans and is still obsessed with stars, flowers, playing boo and saying hello into the phone (or any object she wants to pretend is a phone).

Max:

Little Maxi is now two months old although people still think he’s just a few days old when they see him for the first time. He was 7lb 8.5 on the 23rd and is still wearing newborn clothes. He began smiling at seven weeks old which we were really impressed by as we were told it could be six weeks after his due date (which would be when he’s 11 weeks).

He still loves his cuddles and is happy for ages lay on anyone’s chest. He’s also a very hungry boy and has around 120ml every three hours, a mix of expressed milk and Neocate. He now spends time in his bouncer and his baby gym and enjoys having new things to look at.

He adores his sister and spends a lot of time looking at her and listening to her. Max’s eyes are starting to go a lighter blue and his hair is still a mid brown and hasn’t started falling out yet. He’s still got the strong grip so many nurses and doctors commented on when he was first born and he’s much more active now, getting to grips with moving his arms and legs.

All in all, both of them are doing amazingly and we are super proud parents!

Harriet, Alexandra and Max x