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

Postnatal Without A Baby

Once you’ve given birth in hospital, you’re usually transferred fairly quickly to a ward called postnatal where midwives look after you by providing regular monitoring of your blood pressure etc, help you establish breastfeeding if you’ve chosen to feed that way and make sure baby is okay too.

First time round, I spent 11 days between postnatal and labour wards after the birth, with Dylan allowed to stay most nights because of how poorly I was. Whilst it was tough and I was in horrendous pain – not just from the stitches and general soreness of giving birth but also from the clots and pneumonia that had decided to join me for the post partum experience – we met some genuinely lovely people there, healthcare assistants, midwives, cleaners and doctors.

The second time round, I was taken to postnatal (I gave birth in a different hospital this time) where I spent six days. But the key difference this time was I didn’t have my baby with me. He was downstairs in NICU and was really quite poorly at the time.

I know how severely under funded the NHS is right now and that you’re lucky to get a bed and some meds! But I so wish the money was there to provide a separate ward for all the NICU mothers before they’re discharged. Having a baby in intensive care is a pretty harrowing experience anyway, but to come back on to postnatal every night and hear the (healthy) cries of everyone else’s baby who is right by their side on the ward is awful. I remember hearing one baby cry while I was waiting for them to intubate Max for the first time because he was so unwell he needed a ventilator – that was probably one of the lowest moments of the whole process. Especially as I knew I wouldn’t hear my baby cry until he was well enough for them to take the tube back out.

I missed most of my regular checks because I was downstairs with Max and only popping back up to express, eat and sleep. I’m sure it was frustrating for the staff me not being there (although I’m assuming most NICU moms do the same?) but it came across in the tone of some. Like I was inconveniencing them or being a nuisance. Some of them would happen to catch me a few times during my shift and never even ask how my baby was doing.

Generally I felt fine. I coped with all that NICU life threw at us. But every time I was on postnatal or thought about it, I felt upset and angry. I dreaded going back on the ward and I couldn’t wait to be discharged. Everyone told me the parent accommodation I moved into for the rest of Max’s time on NICU was super basic and lonely but I breathed the biggest sigh of relief when they finally let me leave postnatal. I think I skipped off the ward at the thought of no more checks, no more stern words from some of the staff and mostly no babies crying.

If I suddenly became a billionaire I would love to fund special private wards for NICU moms where they could come and go as they pleased, chat to the other moms in the same situation and get some support from midwives trained to deal with how they may be feeling. It’s an ordeal but there are ways to make postnatal life easier for those who have sick babies.

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

Max’s Story: Part 2

As the post title suggests, this is the second part of our son Max’s NICU journey. If you haven’t read the first part, it would make sense to do so before returning to this post. You can find it here.

Day 2 –

Max’s bilirubin levels were measuring high and he looked very yellow so he was put on phototherapy for jaundice. We always knew this was a possibility because of him being prem, and having had a term baby previously with jaundice seemed to make it more likely (although I have no idea if that’s factual!). The hardest thing about that was him having to have his eyes covered (hilariously by a mask called an Eye Max) for days on end while he was under the lights. Not being able to hold your baby takes away so much of the experience of having a newborn so to not be able to see his eyes either is horrible.

Day 3 –

Things were improving today. Although we were told his initial swabs had tested positive for group b strep and that as a result they wanted him to have a lumbar puncture to check he hadn’t got meningitis. Although he wasn’t showing signs of it, the mere mention of the M word is enough to frighten any parent. I can’t imagine how horrific it would be to be told your child had meningitis so it was beyond a relief when the results came back clear.

Day 4 –

Today felt like an amazing day. Max was well enough to come off his ventilator and was coping well on optiflow. We got to hold him, just for 15 minutes each because he needed to go back under the photo therapy light. But that half an hour of cuddles was one of the best experiences of my life. Watching Dylan hold his son for the first time was truly incredible.

Just after, the midwife who delivered Max (Antoinette) came to say hello as she’d been doing a clinic down the corridor and then our friend Liz who works in the hospital as well came down to see Max at the end of her shift.

It felt like a good day. An amazing day in fact. I went upstairs to the postnatal ward (which was an awful place to be when your baby’s poorly! More on that later) feeling so positive. We knew they were trying to get Max moved back to the hospital in our town which would have allowed me to go back home and help Dylan who was trying to keep Alexandra in her routine. I was missing both of them a lot so the prospect was amazing.

Day 5 –

Dylan summed up this day as having the rug pulled from under you. He was right. There was no other way to describe it.

When I came down in the morning to see Max, it was immediately obvious he wasn’t feeling great. His chest didn’t look right when he was breathing and when the doctor examined him she said she wanted an X-ray done. The X-ray showed his right lung had collapsed. He was soon put back on the ventilator.

We were devastated. Looking at our tiny baby knowing his one lung wasn’t working was just horrible.

We tried to stay positive. We tried to reflect on the fact a baby who’d previously been in the cot next to Max had died that day and remember how lucky we were. But even now thinking back on that day makes my throat feel lumpy and my eyes sting.

Day 6 –

I was discharged from the ward and given the keys to a parent accommodation flat. Getting off postnatal was a huge relief and it also meant I could leave the hospital to get some food shopping and do some other errands. By this point Dylan and I had hardly spent any time together in over a week. It’s incredibly isolating to have a poorly baby, you’re constantly surrounded by people but not your family and friends. You talk to nurses and doctors constantly about their medical condition but you don’t get that privacy and time to talk to your husband about how you feel, to cry until your head hurts or just to lie down in a dark room for half an hour in silence.

Days 7, 8 and 9 –

Writing this a week on I’m struggling to remember these days. Each day passes in some sort of weird haze, punctuated by meds and nappy changes and discussions with doctors and X-rays and blood tests and tears and hopefully some smiles too.

Each day you wake up just hoping for some stability and for nothing to go horrendously wrong that day.
By day nine, Max was well enough to be extubated again and we dared to hope that this might be a turning point.

Harriet, Alexandra and Max x

Max’s Story: Part 1

Our super baby

When you have a baby, you expect long days, restless nights, tears and ups and downs. You probably don’t expect an extended hospital stay, machines, wires, nurses, doctors and uncertainty for the future. But that’s what happens. And sometimes it happens twice.

Anyone who’s been reading this blog for a while will know I became critically unwell after having my first baby Alexandra in August 2015. Things were touch and go for a time. We were just beginning to start healing from that awful, awful experience when we learned we were due to become parents again. Many appointments, injections and scans followed before our son Max was born five weeks early on Sunday, March 26th 2017.

It would be untruthful to say we had been relaxed during the pregnancy. We’d put on a positive front but there had been moments behind closed doors where either or both of us had crumbled under the weight of the anxieties and unknowns of the pregnancy. While I was medicated and my illness was diagnosed this time, doctors couldn’t guarantee the CAPS wouldn’t return. They couldn’t guarantee they could deliver a healthy baby.

Most of the time I kept my spirits up. Sometimes I looked at Alexandra and wondered if I’d see her grow up (this all sounds so dramatic reading it back but it’s true). Sometimes I looked at Dylan and wondered if we had gambled too much this time and whether I’d be leaving him to raise our children alone – if our son even made it into the world safely.

So when the most gorgeous 4lb 13 little boy was placed on my chest at 11.57am on March 26 and I held him there for 15 minutes or so, it felt like finally this was our moment of luck. This little boy had been sent along to complete the tiny hole in my heart that I thought would never be filled when a second baby looked unlikely.

We had always felt lucky to have one healthy baby together. It’s hard to comprehend just how much Alex battled against the odds to be born at term with no complications aside from borderline jaundice. But to have two children. My heart was full.

So what happened next seemed especially cruel after having those moments after birth.

Day 0 –

Max was taken upstairs to the transitional care ward to have all his checks done by a paediatrician. The plan was that I’d follow him up there after six hours – I had to stay on the labour ward until then to be monitored. Dylan went with Max and our midwife Antoinette (who was beyond amazing! I want to talk in a separate post about the differences between my two births and how fantastic our midwife this time was) helped me get a wash and some food down me.

By the time I was ready to go, we were told Max had started grunting – a sign of illness in prem babies – and had been taken down to the neonatal intensive care unit (NICU) to be monitored. I was wheeled down there and got to have quick cuddles with him. At this point he was on oxygen being given through his nose and also had a feeding tube. It was worrying but we were hopeful it was something short term.

Day 1 –

X-rays showed Max had congenital pneumonia, meaning a chest infection which starts either before birth or shortly after. He was moved over from the high dependency to the intensive care side of the unit. I popped out to the cafe in the evening with my parents and by the time I came back it was obvious he was really struggling.

It was like he was trying to scream at us. The doctors agreed he’d deteriorated and decided to ventilate him, which means putting a tube down his throat which gives oxygen and pressure to help with breathing. I’d been ventilated during my illness and had an awful experience with the sedation drugs given while I was on life support – so the thought of my tiny baby going through the same process (even though they only give them a small amount of meds while the tube’s going in and they’re not kept sedated) was awful. I can’t even describe the pain of going back to my room on the postnatal ward and listening to other people’s healthy babies crying while mine was having a tube put down his throat to keep him alive.

Why? Why us? Did someone not think we deserved a break this time!

When we went back downstairs to see him after the ventilator was in place, it was instantly obvious it was the right decision. It was like looking at a completely different baby – calm and not struggling anymore.

To be continued…

Harriet, Alexandra and Max x