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