100 Days Old

To my incredible son on your 100th day in this world,

What a 100 days it’s been. We knew from the word go things were unlikely to be simple. Two lines showed up on the pregnancy test on Friday, September 2, just days after your sister turned one. Your dad and I stood in our bedroom for a while just looking at each other in shock.

We never had a conversation about what we would do. From that second you were my baby and we would take on the risks to get you here safely.

The next few months were filled with worry. We tried to carry on as normal and in general you gave me a really easy ride during the pregnancy with you – much more so than your sister who made me feel really poorly most of the way through. But sometimes we look at each other and panicked. Especially in the latter weeks, I spent so many hours lying awake in the middle of the night contemplating what might happen.

We reached 24 weeks and while we could breath a little sigh of relief that we had a chance at a ‘take home’ baby, utter fear took over every time I thought about what might happen in the weeks after your birth. Fast forward another eight weeks and there was a hospital admission and talk of early delivery.

I sat for ten days in hospital not knowing if I’d be coming out with or without you, pregnant or not pregnant. There was still a risk at this point your dad would be taking you home on his own. We avoided induction and even booked in a date for 37 weeks. But of course we didn’t make it that far and instead they decided at nearly 35 weeks we needed to get you out.

Holding you in my arms for the first time was the most empowering moment of my life. Many, many medical professionals helped deliver Alexandra but I gave birth to you without any extra assistance and I felt so strong in that moment. Looking at you it was like everything fell into place. A little hole in my heart was filled in and everything was complete.

I made your dad go with you up to the ward while I had to stay downstairs for a while. And then came the explanation that you’d showed a couple of worrying signs so you’d been taken to NICU. How could we know then the journey we were in for? You spent ten days on the unit with the incredible highs – getting to cuddle you for 15 minutes each on day four, being extubated both times, starting tube feeds. And the crashing lows – being told you needed to be ventilated, hearing your pained cries as you struggled to breath, not being able to see your eyes for a week while you were having jaundice treatment, two lung collapses.

And then on day ten we had our answer. What was going on apart from the sepsis, pneumonia and jaundice. Congenital diaphragmatic hernia. Something I’d never heard of before but is now a common phrase I use. My baby boy had a hole in his diaphragm. It was action stations from then on as you were transferred to another hospital for your surgery.

An operation you absolutely powered through like the brave boy you’ve been since day one. Even the doctors couldn’t believe how well you recovered, getting home a week later when most babies would still be on a ventilator in intensive care.

And so we took you home and began our journey as a family of four with our bouncy active toddler and our tiny little boy. But the time we had at home getting to know one another was to be fairly short and you were less than six weeks old when you were admitted to our local hospital this time.

We kept calm at the time but looking back that night was terrifying. You were becoming more and more pale and cold and listless. The doctors had to abandon a planned lumbar puncture when you spaced out for a few moments. There was talk of transfer to a specialist hospital, of more surgery, of a potential liver condition.

But of course three days later we discovered the problem was an extremely severe dairy allergy. We were relieved in a way to finally know what was wrong with you and how we could make you better. So began a long process of getting dairy and soya out your system and once you were back on full feeds we had our happy baby boy back. I was so tired at this point having been up through most of the nights as you were so upset from being restricted with your milk, plus the machines and trying to express and a horrible camp bed. Your sister and daddy were down the road at home in an attempt to keep things normal for her. It was awful being separated again so after five days taking you back home was wonderful.

Since then you’ve dealt with so much more: reflux which we were told to expect you to have given your CDH, brain scans, X-rays, appointments. You’ve finally begun putting on weight and actually reached the 0.4th centile whereas before you weren’t even on the graph.

We don’t know what the future holds for you, whether anomalies on your brain scan will cause developmental issues, whether your dairy allergy will be lifelong, whether you will reherniate and face more surgery. We watch you every day for signs of your breathing deteriorating. I read the ingredients list three times on everything I eat just to check I’m
not exposing you to dairy.

But for all of the drama and tears and fears and hospital visits, I wouldn’t change it for the world. Your smiles are just incredible. Your cuddles are wonderful. Watching your bond with your sister grow each day is just the best thing ever.

Alexandra had to fight to get here safe and sound. Never did we imagine how hard you’d have to fight both in the womb and for the last 100 days. Miscarriage and stillbirth rates for APS sufferers are appalling, and CDH only has a 50 per cent survival rate so even without all your other complications, you are a miracle.

You and your sister have taught me so much. I never realised how calm, composed and strong I could be in a life or death situation. I never realised how intensely I could love another human being. I never realised how protective I could feel. How selfless I could be. How utterly devoted to a family I could be.

As I write this you’re sleeping on my chest and it feels like you were always meant to be here. I hope you never stop wanting to cuddle me. I hope you never stop smiling as beautifully as you do now. I hope whatever challenges life throws at you, over and above those faced by others, you continue to tackle them so bravely. I am so proud of you and I’m so thankful you came into our lives. You were meant to be Max. Meant to be.

Momma 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

Max’s Story: Part 3

  1. This is the story of Max’s recovery and discharge from hospital. To read the earlier parts of the story, you can click on Part 1 and Part 2.

Day 10 –

A 2am call from a withheld number is never going to be good, especially if it’s about one of your children. I’d just got up to express when the phone rang and I knew instantly that Max’s lung had collapsed again. He’d been put back onto CPAP as he needed more assistance with his breathing and a X-ray in the early hours revealed his right lung had gone for a second time. The doctors were scratching their heads, wondering why it had happened.

I got about an hour’s sleep and returned downstairs to be greeted with the words congenital diaphragmatic hernia. A closer look at the latest X-ray showed part of Max’s bowel and liver had made their way up into the chest cavity and on examining the X-ray from when the initial collapse had happened, the doctors realised his liver was also in his chest then.

An ultrasound confirmed there was indeed a hole in our little boy’s diaphragm. From then on the day seemed completely hectic. It was arranged for Max to be transferred to the Children’s Hospital across the city and luckily they had a baby who needed to come back to the unit we were on so the swap was arranged for that afternoon.

I packed up the stuff in our parent accommodation and Dylan arrived and very quickly after the KIDS team arrived with the ambulance which would take Max to his new hospital. They explained the whole process and talked us through what would happen during the journey. Max was given medication to keep him sedated during the journey, although the little monkey decided he wanted to be wide awake so they had to give him extra doses to get him to drift off!

We went into the ambulance – with Dylan following us in the car with all our stuff – and after a journey of about 20 minutes we arrived on the PICU.

The difference between the two wards was incredible – from a little room with three other babies in to a huge open space with 31 beds for children of all ages needing intensive care. It was like going from a little airport like East Midlands to walking into Heathrow.

That afternoon he had numerous tests and scans and then we were told he’d be likely to have his operation the next day.

Day 11 –

Overnight I’d had to go and be checked at our original hospital as I wasn’t feeling well but luckily they had let me out to come back and be with Max. I stopped that night in a small room off the ward but was told in the morning there was a room for us at Ronald McDonald House just around the corner from the hospital.

Then the day became a process of waiting. Around lunchtime they confirmed they’d be taking him down for his operation at 3pm. It was set to take three hours so Dylan and I used the time to have some rest and grab some food.

At 6pm we received a call from his nurse to say he was back and everything had gone well. It was a huge relief although we’d felt quite positive from everything they’d told us before that it would have been. Unfortunately we just missed the surgeon so we didn’t get much more information than that they’d managed to do the surgery keyhole and hadn’t had to open him up so that was excellent.

Day 12 –

A chat with the surgeon confirmed when they had pushed Max’s liver back down into his abdomen, there had been enough diaphragm to stitch up the hole rather than needing to patch it. The overall recurrence rate is 20 per cent but this is significantly reduced when they’ve been able to stitch rather than patch it, so that was obviously a huge positive.

Everything seemed to be going well through the day and they were able to reduce his oxygen and pressure on the ventilator throughout the day before finally being able to extubate him around half seven in the evening. Alexandra and Dylan were stopping in the Ronald McDonald House that night so he was able to go over and see Max while I stayed in the room with sleeping Alex. It was incredibly hard to juggle things for Dylan so I was glad he’d been able to spend that time with his son.

Day 13 onwards –

The following day, less than 48 hours post op, Max was transferred to the neonatal surgical ward to continue his care there. The main focus was on getting him feeding so that he would start putting on weight and come home. Once they were happy with how much milk he was having every day and the fact it was making its way out the other end then that was a big tick in the box.

There was also plenty of talk about a brain scan he’d had which showed a small (around 4mm) area where there was either a bleed or a lesion. It’s in a part of his brain on the left hand side which controls movement and posture in the right hand side of the body. As of yet we don’t know what effect, if any, this will have on him. It could be as he grows that other parts of the brain will take on any function lost as a result of the bleed, or conversely it could get worse. So he’ll need regular monitoring and we’re awaiting a repeat brain scan.

However it’s not something they seem overly worried about and the lack of urgency about repeating the scan is reassuring as I’m sure they’d have been sending him for tests left, right and centre if they thought it was going to be a massive problem. Really it’s just a case of waiting and seeing – and we’ll have regular contact with the team at our local hospital to ensure any developmental issues are picked up on.

When our tiny little boy was 18 days old, the doctors on the ward round decided that he was truly well and fit to go home. After an (always) agonising wait for most the day to be discharged, we were finally on the way with our precious bundle in his car seat.

And so the adventure starts…

Harriet, Alexandra and Max x