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

The Start Of The Recovery

Tiny Alexandra - look how small she was!

Tiny Alexandra – look how small she was!

Click to read parts one and two of this tale if you haven’t already!

I was transferred to Birmingham ITU on Saturday, October 17, and they attempted later that day to bring me out of sedation but were unable to. There was talk of me needing a tracheotomy if they tried a number of times unsuccessfully but luckily the next time they tried on the Monday I woke up. It was a horrendously confusing time for me because I had no idea where I was or what had happened, they kept telling me I was in Birmingham but the last memory at that point was of going into A&E in Telford in mid September. Also the cocktail of drugs they had me on, and the fact I’d been under sedation, meant I was experiencing what they call ‘ITU delirium’ – I honestly believed the nurses were trying to kill me and were selling my drugs to teenage boys smoking in the next room. I told people I could see massive blocks of ice walking around and that the doctors were on rocking horses. It sounds funny now but at the time it was awful being convinced you could see and hear things and no one else being able to, and not trusting the people who were looking after you.

I had to be put back on the ventilator the following day but luckily by the Wednesday I was able to come off it again and I was well enough to be weaned off the oxygen. The amount of treatments I had is ridiculous and I can’t remember them all! But they included five lots of plasma exchange (where they take the bad plasma out and replace it with ‘good’ plasma), I had antibodies put in me and I was also treated with so many medications including one which is apparently known as the medical form of Domestos! I asked one doctor if I had anything left inside me which was mine and he said apart from a few of my own red blood cells, pretty much all everything in my blood was someone else’s.

For the first few nights in ITU I didn’t sleep at all, I think part of it was all the meds including steroids but part of it was psychological – I truly thought if I went to sleep I’d never wake up again. They even tried giving me some medication through a drip to get me to sleep and that didn’t work. Dylan had put pictures of Alexandra up around the room so I just stared at them – I knew I wanted more than anything to get home to the both of them but at the same time I was so scared I wouldn’t make it there.

Although things were on the up after a few days in Birmingham, there were always going to be long-term effects after such a big ordeal. One was my right hand – my limbs had been affected by the clots too (in fact that was when the doctors started to think it was APS not lupus) and although they’d mostly returned back to normal I had lost the feeling in most of my hand and the fingertips and nails were blackened. It’s slowly returning but the doctors have no idea whether I’ll ever get full use of it again, meaning part of my recovery has been about learning to do things a little differently (it took me a few goes to master nappy changing!). There were also concerns about the long-term prognosis for my heart which was pumping at less than half the rate it should be. More on that in the next post.

Because of the amount of muscle mass I’d lost while I’d been under sedation I had daily physiotherapy to try and get some of my strength back – on the Thursday I managed to sit on the side of the bed with two people’s help and the following day I was able to stand up for the first time. On the physio’s suggestion it was organised for Alex to come in on the Friday to see me. I cried so much when they told me it could happen and then spent the next 24 hours scared stiff something would happen to stop her being able to come.

Luckily it didn’t and I finally saw my baby girl again on the Friday, she had come in while I was on the respiratory ward in my local hospital but I had no memory of that so really it felt like the first time I’d seen her in a month. She’d changed so much, got so much bigger and started smiling. It was heaven to finally see her but at the same time so upsetting to know, however short a period of time in our lives, I’d missed out on that bonding time with her. From that day she came in with Dylan for most of the rest of the days I was in hospital, seeing the two of them was always the best thing about my day. Knowing some people don’t even get visitors, the fact my mom was there every morning into the afternoon, Dylan and Alex every afternoon into the evening and others in between too was amazing. My support network has been expansive and so fabulous (a special thank you here to Henrietta and Ben, Beccy and Manda for their support, to the NCT ladies for looking after Dylan and to everyone who babysat Alex so Dylan could come to the hospital when I wasn’t well enough for her to visit. You are all stars).

Join me next time when I get to move out of intensive care and on to a ward!

Harriet and Alexandra x

Going Home…Then Back Into Hospital

My little munchkin!

My little munchkin!

If you haven’t read my last post, this one probably won’t make much sense so why not pop over there and then come back?

Both myself and Alexandra were discharged from hospital and we came home and started to try and settle into some form of family life. However, I was massively struggling with my breathing and it was taking me about ten minutes just to get up the stairs, stopping about three times on the way. I was sleeping sitting up, propped up on loads of pillows, and I just couldn’t do anything without getting massively out of breath. I managed to get out a couple of times but it would completely wear me out and sometimes I was spending most the day in bed. I wasn’t really enjoying being a new mom in the way I should have been because it was so hard for me to do anything with Alex and, although we had some lovely times like the visits from family and friends, it was quite tough. Dylan was struggling too as he was trying to work from home but would end up doing most of the care for Alex day and night, as well as trying to look after me.

After two weeks at home, the day Dylan went back and worked in the office for the first time, my breathing deteriorated further and that evening he called NHS111 who sent two paramedics round who took me into A&E. I spent a few hours in there being assessed and had another x-ray before eventually being transferred to the respiratory ward. The same ward I’d battled not to end up on without my baby, and just two weeks later I was there. Much of my memory of my two weeks on the ward was completely gone, but I’m now getting back bits of it. I can now remember the layout of the ward, what my room looked like and a few of the staff, as well as some of the moments on there. From what I’m told I was really low for some of my time on there and was really struggling with having so many cannulas, blood tests and other procedures – to the point where I was constantly asking why if I was told I needed something else doing and I managed to persuade them to give me tablet forms of the antibiotics I was on for a couple of days until my condition worsened again.

Things just weren’t getting any better, quite the opposite in fact. I ended up being moved to the intensive care ward (ITU) and was sedated and on life support. Some of the doctors were convinced I had lupus but the tests came back negative. Around this time a condition called anti-phospholipid syndrome was mentioned but the feeling was still that I had lupus. Dylan did a lot of research and looked at the symptoms of both, becoming more and more convinced that it was APS. Meanwhile my kidneys had stopped functioning so I was on dialysis, I was having lots of blood transfusions, I had a chest drain in taking away all the fluid and they were seriously concerned about my heart.

A few days after I’d been moved to ITU the diagnosis of APS was confirmed. Essentially it’s an autoimmune condition where the blood becomes too sticky, it’s not hugely common but some people have it and don’t know about it. Women with the condition have a much higher chance of miscarriage or stillbirth but even then it can go undetected. There is also a much more serious variant of the condition known as catastrophic anti-phospholipid syndrome (CAPS) which can be triggered by a number of things including pregnancy and infection. This is what I’d developed and it meant my body was now producing blood clots in my organs. CAPS has a 50 per cent survival rate (although study samples are always very low because it’s so rare) and the hospital I was in had never seen a case of it before. One doctor said the odds were ‘stacked against’ me and others warned because of my multiple organ failure that things were not looking good at all. The only positive at this point was my age, my family were told had I been older I wouldn’t really have had a chance. Also they knew I had some brain function as I had reacted to a couple of things while under sedation, although it wasn’t known how lucid I would be or whether I would even recognise my family and friends.

Because of the rarity of my condition, there are very few experts in it but luckily there were at the Queen Elizabeth in Birmingham, just an hour away. There had been talk of transferring me there for a couple of days but numerous concerns were raised including the possibility that I was too ill to even make the journey. Eventually the QE agreed to accept me on their ITU (the largest in the world!) and I was prepped for the journey. The preparation took about five hours and I had to be paralysed for it.

My next post will be about my recovery in Birmingham, so pop back soon to read it!

Harriet and Alexandra x