World Prematurity Day

Our super baby

I debated whether to write this blog as Max was only a little bit premature and it feels a bit like telling people you’re a trained mathematician just because you passed your maths GCSE. But the fact is he was born before ‘term’ and we did see inside the walls of an NICU unit, thankfully only for a short time. So it’s World Prematurity Day and I wanted to mark the occasion by sharing our journey – although I have talked about it in various different blog posts since Max was born this March.

When I was pregnant, we were warned repeatedly about the potential need to deliver baby well before he was ready to arrive. The goal was always 37 weeks which is classed as term, and we had an induction date set months before (April 8 was the date we were aiming for). At times during the pregnancy, reaching viability at 24 weeks seemed like an impossible task – but as it was we reached 32 before there was any sign of trouble. I was admitted for ten days and prepped for a potential induction with two steroid injections to help strength baby’s lungs.

At 34 weeks, we went for yet another growth scan which revealed baby had stopped growing and there were concerns over the blood flow from the placenta. I knew as soon as the sonographer said she needed to talk to the consultant that there was a problem and I’d probably be induced that night.

Two days later on March 26, I held my baby in my arms for the first time. We’d had no idea before birth whether he would be poorly, require oxygen or be absolutely fine. He came out breathing on his own and spent a happy 15 minutes lay on my chest before being taken up to transitional care by the team as I needed to spend six hours on the labour ward being monitored before they were happy to move me. By the time those hours were over, he had been transferred to the NICU with breathing difficulties.

The next few days were a whirlwind of antibiotics, different theories on what was actually wrong with him, tubes, wires, jaundice masks, doctors, nurses. Weirdly, given I’d just given birth and my baby was poorly, I don’t think I crumbled. Except when they told me Max needed to go on a ventilator as he was struggling. That was like someone had punched me square in the stomach. We went back up to my room on postnatal and listened to the healthy cries of healthy babies while mine was having a tube inserted down his windpipe. That got to me.

A whirlwind of emotions. Every day we just prayed for a stable day – not for anything good to happen, that was too hopeful, just a stable day. I expressed every three hours because it was something useful to do, even though he wasn’t drinking yet. I only went back to my ward to eat occasionally, express and take tablets. Then after a few days they let me transfer to the parent accommodation which was bliss as I had a bit of peace and quiet and most of all, I couldn’t hear other babies crying.

At 4lb 13, he was the biggest baby on the NICU but he still looked tiny to us! He showed us his character, tugging at his tubes whenever his breathing got stronger as if he was telling us he didn’t need them anymore, and no matter how often the nurses tucked him in, he insisted on having one foot resting on the little cosy rolls of sheets wrapped around him to make him feel safe in his roomy incubator.

By the time we got him home (one hospital transfer, one operation, one feeding routine established, one hell of a ride later), he just looked like Max to us. Yet when I look back at photos, he’s incredibly thin and still quite ill looking. Now, you’d never know. We chose not to share pictures of him on the ventilator, so any pictures on social media or here are either when he just has his feeding tube in or when he’s completely tube free. I don’t know whether we will in the future, but for now they’re just for us to look at and marvel how far he came in such a short period of time.

Before we had Max, I’d never really thought that much about premature babies although I’ve known a few people who’ve had them. But now I know, they are among the strongest beings out there. In the morning, things can be touch and go and by the afternoon they can be fighting again. They are so tiny but so fierce, and they are looked after by some amazing people who go above and beyond to keep them safe but also to look after you too.

Watching my prem baby go through everything he’s faced so far has truly humbled me. I will never stop telling him how proud I am that he has smashed every obstacle in his way to become a baby who no one would ever guess has had such a hard ride. I take my hat off to all prem babies fighting their incredible fight, but I especially take my hat off to my Maxi.

Harriet, Alexandra and Max x

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