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

Take Two: Week 32

Well this isn’t going to be the 32 week round-up that I was expecting, mostly because last Monday at 32+2 I ended up taking residence in hospital and it looks like I’ll be here until baby arrives. I debated just not mentioning it on here, but it’d pretty hard to do a weekly update without doing so – I thought I might get away with it for a week but five weeks is pushing it a little. It was actually Dylan who persuaded me to include the fact I was here (I didn’t know if it was a little attention-seeky like those people who post pictures of themselves with a cannula in or tag themselves at the hospital and then go through the whole ‘are you okay hun?’ ‘I’ll inbox you’ comments saga). He said actually the fact I’m a ‘high risk’ and have ended up here is what makes my pregnancy different and surely that should be included on the blog.

Anyway, I’m here. No great panics, I just had some short-lived symptoms like slightly elevated blood pressure. Everything has been utterly stable for the past week but so far the doctors have wanted to keep me here just in case anything creeps back up. Baby is absolutely fine, moving and growing well – there are no concerns for him which is fabulous.

I’m on the antenatal ward which means while there are some women here just for monitoring like me, a lot are here for induction. I’ve heard more contractions in the last week than I ever wanted to, I’ve heard a woman give birth in half an hour (from first contraction to baby arriving), I’ve also heard a woman who showed off an interesting range of farmyard noises for an entire night. Before I was moved into a side room by myself, I discovered how loud a pregnant woman could snore and then didn’t get much sleep the night after worrying if I was snoring.

I spent far too much time wondering what the ‘PET Centre’ was across the road before I googled it and found out it was sadly just a type of scan and did not involve puppies and kittens. I’ve secretly enjoyed being one of the least heavily pregnant patients which means I get to the food quickest when it’s served, and then wondered why the hell I bothered when I’ve had to choose between Unidentifiable Mush 1 or Unidentifiable Mush 2.

I’ve felt like I’m on a holiday somewhere really hot as they insist on having the heating full blast (they can’t even control it on the ward for some bizarre reason) so it’s windows open and fan on 24/7. I’ve laughed at the fact I’m allowed to walk over to the hospital over the road to go to the café there but they want me to take a taxi over to the same hospital for my appointment there tomorrow?! (I can actually see the entrance from my window it’s so close!).

It goes without saying that I am extremely fed up in here, missing Alexandra and Dylan like crazy and just wanting to be at home for the last few weeks of this pregnancy. There’s been a whole lot of feelings going on, too many to throw at a blog post. But baby is well, Dylan is doing a fab job of keeping Alex’s routine going with the help of family and friends, everything is very stable at the moment. So we just have to keep going day by day and accept that we knew this pregnancy would throw some crap at us at some point and we were probably lucky to get away with it for 32 weeks!

Harriet, Alexandra and bump x

A High Risk Pregnancy

I’ve seen a lot of women ask on baby forums and elsewhere about seeing consultants and I think there’s a general lack of knowledge around low/high risk pregnancies so wanted to write a quick post about it. Please remember I’m in no way a medical expert and anything I say here is based upon my own limited experience – please ask a midwife/doctor etc anything you’re not sure on!

When I had my booking in appointment during my first pregnancy, I was categorised as potentially high risk as I’d got a history of mental health issues, including a previous hospital admission the summer before. This meant I had some extra appointments to see a specialist mental health midwife so they could check how I was doing and put in place a plan should my health deteriorate following the birth. Being high risk also automatically means they want you to give birth at a consultant-led unit rather than a midwife-led unit or at home.

At 33 weeks, it was decided because I hadn’t been on medication during my pregnancy and hadn’t been unwell at all, they would step me down to low risk and I’d just have a follow up appointment six weeks after the birth. But then because I started showing symptoms of pre-eclampsia at 37 weeks and my platelets became dangerously low, I ended up becoming high risk again and giving birth in the consultant-led unit after being induced.

This time round, I was automatically high risk and as such won’t even be giving birth at the hospital I had Alexandra in, I’ll be going to Birmingham Women’s Hospital which takes on the complicated cases from around the region. This has meant monthly obstetric and rheumatology appointments (more often from the end of the second trimester), monthly haematology appointments with plenty of blood tests, frequent cardiology appointments and echocardiograms and ECGs to check how my heart’s performing, weekly midwife appointments from 16 weeks (luckily I’m able to have these at my GP surgery) and more frequent scans (so far at six, eight, 12, 17 and 20 weeks as opposed to the standard 12 and 20).

It’s also meant a change in medication (although actually taking fewer tablets each day) and twice daily Clexane injections (which are a bitch but worth it if it keeps us safe!). We were told very early on that as soon as we had any worrying signs or symptoms we’d need to have a frank discussion straightaway. They will deliver at 37 weeks (considered term, although your due date is 40 weeks) but would be more than happy to deliver at 34 weeks if needed and will consider it beforehand if necessary. Thankfully we’re now at the stage where they would be looking at early delivery with every medical intervention possible to ensure baby was healthy, rather than being told we need to end the pregnancy to save my life.

Of course, a lot of this is fairly worrying and yes it would be lovely to have a low risk pregnancy! But equally, baby has been perfect on all scans so far and I would be much more upset if we had to contend with the thought of our little one being poorly. I’ve said from the outset that, while some people may have considered it too much stress to go through, this pregnancy and everything that has gone with it will be more than worth it if we have a healthy baby at the end of it.

If we’d been told at the start of our pregnancy with Alexandra what was about to happen, then maybe we would have considered our options. But knowing what we know now, and having her in our lives, would we go through that again? Absolutely, a million times over. And I think that’s what’s made this second pregnancy easier, knowing how much I already love our second baby and how much more I’ll love him once he’s here and I can hold him and watch him grow every day. Knowing how much being Alexandra’s mom means to me and knowing I have a chance to have that all over again and to give her a sibling to grow up with – a few people have said to me they couldn’t deal with the injections and all the appointments and the stress, but it’s more than worth it for that chance.

Sorry we got all a bit slushy towards the end there! Here’s to reaching 24 weeks this weekend and trying to keep baby in there for a few weeks longer!

Harriet, Alexandra and bump x

Growing Another Bump

Baby 2

This is the post I thought I’d never write.

I have talked pretty openly and honestly on a number of occasions on this blog about the medical advice not to have another child. I’ve spent a lot of time trying to find the positives in having one child, relishing the fact we were even able to have Alexandra and trying to come to terms with the massive, massive things that happened last year.

I was almost getting to the point where it wasn’t such a big thing every day anymore. Sometimes I could go a day or two without thinking about it. But now our whole world has spun on its axis again!

I’m writing this on September 5, three days after finding out I’m pregnant again. Although it will be a lot longer before I actually post this, I wanted to get down some of the raw feelings and immediate reaction. We hadn’t been trying for a baby, in fact quite the opposite, based on the advice we had been given. Even though I was nine days late and feeling as sick as a dog, I was pretty sure the pregnancy test would come back negative and we’d all go on with our lives as normal. But it wasn’t. And then the next one came back positive too.

It was days after we’d thrown away our bouncer and high chair. All Alex’s 9-12m clothes had just sold on eBay that morning. I’d given away her playmat the week before. We had absolutely no reason to think we’d ever be in this situation. I was on the same method of contraception as I’d used seven years prior to trying to conceive Alex with no problems. I know nothing is 100 per cent but we hadn’t even considered a shock pregnancy.

Because that’s what it’s been – a shock, a panic, a crazy surreal dream. We have a very long and probably very challenging road ahead of us before we can hopefully bring a healthy baby (and a semi-healthy me!) back home. We know this is going to be a very hard ride.

The medical side of it started straight away with many calls to make and appointments to arrange. My medication has to be completely swapped while I’m pregnant and I’ll have daily Clexane injections (oh what a bitch they are!) until six weeks after baby is born. As I write this I’m due to go to hospital in two days, firstly for an appointment with my haematologist (who specialises in my condition) and haematology midwife (who I met a couple of times while I was in hospital about eight weeks post partum, she was great and spoke to me a little about bonding with Alex and all the other things I was worried about at the time) at the hospital where I’ll give birth (not surprisingly I’ll be a high risk case!). Then it’s over to the hospital opposite to see a cardiologist who specialises in obstetrics, who will look after the heart side of things while I’m pregnant. She’s a colleague of the cardiologist I was under immediately after my heart attack.

Of course, the absolute aim is for me not to have another episode of CAPS and, although we know my heart function may deteriorate during the pregnancy, for me to come out the other side without having a trip to intensive care! The other, just as important aim, is a healthy baby. When we were pregnant with Alex I, of course, worried about the possibility of miscarriage – as any expectant parent does. This time round it’s at the forefront of my mind. We were so incredibly lucky to have a healthy baby born after 37 weeks with no problems. Will we get that lucky again? Will we get to hold another precious little parcel and take them home and watch them both grow up together?

We simply don’t know right now. It’s absolutely terrifying and I have a huge knot in my stomach 24/7. All these months of worry, injections, heart scans, appointments, more appointments and everything else we have ahead of us will be oh so worth it if we get that second chance at being parents together. How lucky we’ll be this time I just don’t know. The medical experts can’t tell us. It feels like betting your whole life on the toss of a coin.

Harriet, Alexandra and bump x