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

Getting Better

An Alexandra montage!

An Alexandra montage!

This is part four of the story, click for parts one, two and three.

That Friday in ITU where I saw Alexandra seemed like a bit of a turning point and from then on they started taking out all of the lines going into my body – I had a few in my neck and my arms. I had a shower for the first time on the Saturday and started being able to walk a few steps. On the Monday I had my catheter out, which was the last step towards being able to go up to a ward. I finally had no lines going in me at all! The downside of that was they had to stab me every time they needed blood from me rather than being able to take it from an existing cannula but at least it felt like I was getting back to ‘normal’. The following day I was transferred upstairs to the cardiology ward, again in a side room but this time with my own en-suite and a view of outside! Okay it was only of roads and traffic, but I could see the helicopter landing and it was just amazing to see the outside world.

I stayed on the ward for a week and a half, although it felt much longer. The pace of life there was so much slower than ITU where I had one-to-one care and so much was going on. In a lot of ways it was fantastic because I could sleep better and I knew I was well on my way to getting home, but it also meant time went so slow. I’d be watching the clock waiting for my mom to come in as she was always the first visitor in the day. I’d already had an angiogram which had showed there were no clots left in my arteries – which is what we expected but of course good news – so now it was just a wait for a slot to get an MRI scan to see what damage had been caused to my heart. Once I had that it confirmed I’d had a heart attack at some point when I was very poorly, caused by a clot in one of my arteries (not by lifestyle such as high cholesterol or smoking which people traditionally associate with heart attacks) which had left some of the muscle dead and some stunned. The hope is eventually my healthy muscle will start overcompensating for the dead muscle and the stunned muscle will wake up, but at the moment my left ventricle is pumping blood around my body at a rate of 25-30 per cent when it should be 55-60 per cent. So now it’s a case of heart meds for life, cardiac rehabilitation classes and regular monitoring to see how it’s repairing itself, if it does.

The doctors had been saying they hoped to get me home at the end of the following week but, although I was excited, I didn’t dare get too overjoyed in case it didn’t happen. Even on the Friday morning when they had confirmed I was being discharged, I kept saying I wouldn’t believe it until I was walking off the ward. Well come 3.30pm and that’s exactly what I was doing. They asked if I wanted a wheelchair to get to the car but I wanted to walk out of the hospital myself. When you’re recovering from an illness you have to be motivated and determined, and what could be better than ending my hospital experience walking with my amazing other half to go home to our perfect baby daughter, when three weeks previously the nurse who first looked after me when I arrive thought there was no way they’d keep me alive.

I now face a long journey to get back to full strength, they say around a year to recover after a stay on ITU, with the added complications of my heart and hand and the knowledge I’ll be on medication for life. But I’m sat here writing this while Alexandra sleeps soundly near me and I’m waiting for Dylan to come home from work. Being able to be part of this family is an absolutely blessing and I will truly always be so thankful for whatever it was that made me pull through – the medical teams, luck, my age, a combination of all that and other factors too. Who knows? All I know is I’m very happy the journey didn’t end there and although all of us have been through an ordeal, it’s made my relationships with my loved ones stronger, it’s made me feel stronger. There will be bad days as we all process what’s happened but there will also be so many good days as we all watch Alexandra grow and I get to do all the things I always wanted to do with her and so nearly never got the chance to.

So thank you doctors, nurses, midwives, healthcare assistants, everyone at both hospitals who really did save my life. Thank you family and friends, especially my mom who was at the hospital daily. Thank you Dylan for being an absolute rock, for being ‘Mr Mom’, for everything you’ve done and continue to do for our family. Thank you Alexandra, your pictures all around my hospital room are why I fought so hard to get walking again, get mobile and get home to you my precious little lady.

Harriet and Alexandra 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

The Bit After The Birth…

Every baby girl needs a tutu!

Every baby girl needs a tutu!

When you get pregnant, when you go to the classes, when you finally give birth and your baby’s placed on you for the first time, you think about being a family, about going home and starting your motherhood journey. You don’t think about becoming critically ill and missing a lot of your baby’s first weeks! But apparently that’s what sometimes happens. I haven’t blogged for a long, long time as shortly after my last post I was readmitted into hospital and that’s where I’ve been up until Friday last week. Thankfully, I am much much better and Alexandra is a healthy, happy and thriving little girl (although getting bigger by the second – she’s nearly three months old already!).

So much has happened it seems overwhelming to get into it, but I’m just going to start at the start and when the post starts getting too long I’ll publish it and start a new one:

After Alex was born (birth story here), it’s all a bit of a blur for the next few hours apart from when they tried to take me for a shower, I collapsed and all of a sudden there were about a dozen people in the room! At around 1am they moved me down from the labour ward to a bay with four beds on the postnatal ward, meaning Dylan had to go home. I was just watching Alex all the time so the midwives took her cot out of the room and in with them for a couple of hours so I could get some sleep. We had visitors the next day and everything seemed to be going okay, my platelet levels were even going up.

On the Monday when she was two days old they were talking about discharging me because of this but then one of the lovely midwives, Karen, noticed Alexandra was looking a little bit yellow and suggested she get tested for jaundice; it turned out she was right on the borderline so she had around 17 hours of treatment. Over those 17 hours my oxygen levels suddenly started dropping and no one could work out why, the staff were all testing themselves, swapping machines in case the original one was faulty etc. I started feeling really dizzy and out of breath and ended up on oxygen – around this time I was transferred to my own private room. I was having to get help to get to and from the bathroom and was really feeling quite rubbish.

I ended up having numerous tests including chest x-rays and a CT scan where dye is put into your veins – this led to a diagnosis of extensive pulmonary embolisms in both lungs (blood clots) and pneumonia. I was put on warfarin which is a drug which controls the consistency of your blood and stayed in hospital for a further week. I look back on those first 12 days as quite a happy time because I loved the midwives and healthcare assistants looking after me and Dylan was allowed to stay so even though he was on a little camp bed, me on a hospital bed and Alex in a plastic cot at least we were all together in one room.

There were of course huge down moments, the most major of all being two days before the wedding when we had to have a serious chat and come to the decision I was too unwell and it would be too much of a risk me leaving the hospital for the day. Up until that point the doctors and rest of the staff were going to do everything possible to ensure I could get there, even if I was in a wheelchair and on oxygen, but by the Thursday they too said it wasn’t a good idea. I’ve still double barrelled my name by deed poll and we’ve both now started wearing our wedding rings but of course it was heart-breaking to call off something we’d planned for so long and put our all into organising.

Fast forward to the following Wednesday and there had been talk for a couple of days of me being transferred to the respiratory ward and Alexandra being discharged as she was absolutely fine and they’re not meant to keep babies past ten days on the antenatal ward. But I seemed to have got a little better (I was adamant I wasn’t going up to the ward without my baby so I was desperate to improve!) and the decision was taken that I could be discharged.

I’m going to leave this post here as it’s already very long! But I’ll be back soon with the next chapter.

Harriet and Alexandra x

It’s Not An Illness

untitled

If you’ve ever been pregnant, the likelihood is you’ll have heard someone say ‘it’s not an illness’. There’s this huge school of thought (and it does make a lot of logical sense!) that you shouldn’t really stop being you and stop doing all these things you used to do just because you’re up the duff. But on the other hand, you constantly get people telling you off for trying to do anything – pick up a shopping bag, reach somewhere high/low etc. People step in at the slightest hint you might need to move just a centimetre in case they need to assist.

It’s a tricky one because yes there are times when you might want some extra support or someone to lend you a hand to save you spending ten minutes doing a ten second job (especially during the third trimester) – and of course you don’t want to offend anyone who’s genuinely trying to help – but on the other hand some people totally overreact! Some guidance here: if I’m trying to lump round 20kg weights then yes please intervene and tell me to stop being silly, if I’m carrying a small bag with one or two light things in it it’s absolutely fine! I have actually on occasions had to remind people I’m not actually dying!

It’s such a weird concept because you get people like our grandparents’ generation telling us in ‘their day’ they just got on with it and were probably still down the mines or sweeping chimneys when they went into labour, then about five minutes after giving birth they jumped out of bed, cleaned the whole house and put the dinner on the table ready for their husband coming home. But there’s so much research now into pregnancy and so much more we know about the long-term effects what we do during those nine months can have on the baby. Taking regular breaks when we need them, not overexerting ourselves too much, not taking up exercise we weren’t doing before we got pregnant – we know that’s all positive!

Also I don’t know about anyone else, but I slightly feel if I want to ask Dylan to pick up something that’s dropped on the floor to save me having to contort myself around the huge bump to get all the way down there and back up again, I feel that’s kind of okay! I’m not being lazy/feigning an illness/pretending I’m desperately unwell, I’m just being heavily pregnant!

Pregnancy is not an illness, but it is nine months of carrying round a person inside you, letting them kick your insides constantly, having your centre of gravity change completely, getting swollen and sore in places you didn’t know could hurt and that’s not mentioning getting the thing out of you at the end!

Harriet and bump x