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

A New Sibling

Alexandra talks Max through how to use his new baby gym.

Bringing a new sibling into the equation is always going to be tough. Whether you’re nine months or 19 years old, you’re going to be affected in some way if there’s suddenly a new tiny thing living in your house that demands attention 24/7 and gets loads of cuddles from not only your mom and dad but from all your visitors too.

But there are ways to minimise the green-eyed monster (although you’re always going to get one or two jealous moments!).

Alexandra was 18 months when her brother was born so her understanding of what was happening was fairly limited, although she obviously knew something was happening.

Before baby’s born:

– Keep them involved is my main advice. Alexandra came to some of my scans to see her brother on screen before his grand entrance. We showed her things we’d bought for baby, talked to her a lot about her brother and she spent a lot of time patting my tummy and talking to him through my belly button.
– Spend time with them. Sounds silly but it’s easy to get caught up in the pregnancy whirlwind and also to want to rest up as much as possible, especially in the third trimester. However I tried to use my pregnancy as a time for Alexandra and I to cement our bond and spend plenty of time playing, knowing my attention and time would be divided very soon.

Once baby arrives:

– Keep the status quo. Don’t switch up the older sibling’s routine to fit in with the baby, do the opposite if you can. For example we’ve incorporated Max into Alexandra’s existing bath and bedtime routine. We still eat meals at the same time, even if it means one of us has to cuddle or feed Max during dinner. We’ve been going out as much as we can and Alex has still been attending nursery even though I’m on maternity leave. So yes things are different now she’s got a brother, but we’ve tried not to turn her whole world upside down.
– Get them involved. Their age will dictate how involved they can be, but simple things like asking them to fetch a nappy and wipes for changing time, or helping them hold the bottle during feeding time, can help them feel like they’re doing a great job supporting you and bringing up their little sibling. Alex is chuffed whenever she gets praised for helping Max.
– Get visitors on board. Luckily our friends and family have been amazing about ensuring they give Alex plenty of fuss (does that phrase make her sound like a puppy?) when they come to our house, and many of them have brought a little something with them for her if they’ve been bringing a gift for Max which is incredibly sweet. Having people pay her plenty of attention means Alexandra doesn’t really get jealous when we have visitors.

I’m not painting the whole two under two, new baby, new sibling scenario out to be amazing and all rainbows and butterflies – but it is working out much better than I envisaged when we found out we were having a second baby. It helps that Alex is incredibly independent and has a good comprehension of lots of things we talk to her about – and that Max is a fairly chilled baby. But it also helps that we work as a team and ensure both of us spend time with both children. We’re getting the odd moment of jealousy but it’s so worth it to see the sweet moments where she holds his hand and kisses him, or the way she now hi fives him before bed as well as her dad and I.

Harriet, Alexandra and Max x

Time For Another

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I’ve written a bit before about my feelings about not having another baby (here). I just feel like I haven’t come to terms with it and so maybe writing a bit more about it might help with that process?

When I wrote last time, I had spoken to the haematology and rheumatology consultants but not to the cardiologists. When I met with them earlier this year they broached the subject of another pregnancy (it’s always the doctors who bring it up, never me!) and basically if I had to summarise the look of ‘don’t do it, you and probably the baby will die, it’s the most stupid idea ever’ then it would be the look both consultants pulled. Basically the warfarin I take to stop my blood clotting can be swapped for different medication which stops clots (so I’d have a daily injection throughout pregnancy and for six weeks after) but the heart medication I take can’t be taken while pregnant and there’s no safe alternative. So although my heart operates at around ten per cent less than a normal heart, which is only classed a mild cystolic disfunction, there’s no way of knowing how much damage nine months without medication would do to it. And of course if I had another episode of CAPS then I’d basically be screwed because of already having a slightly dodgy heart.

To put it bluntly, they can’t put a number on it but it’s more likely than not that either me or the new baby wouldn’t make it. Obviously I have a child and an almost-husband and family and friends to think about when I consider the risk to my own life. But for me the thought of actively trying to conceive a baby who has more chance of dying than living is scary. How would you cope with the guilt if it didn’t survive? There’s a difference between taking a risk with your own life and doing that with a tiny baby’s life. And of course Alex is a huge consideration in all this, the last thing I’d want is for her to be adversely affected by any decision we took.

I know all of this, when I think about it logically there are so many reasons it’s a truly terrible idea. But still it doesn’t sit comfortably with me yet. I can’t feel okay about it yet. When I hold my baby nephew sometimes something just catches in the back of my throat when I think about the fact I missed Alexandra being that age, and I’ll never get the chance to do it again. When I see people on forums who had babies in the same month as I did either planning to or actually falling pregnant again, I feel a little twang of something. There’s a huge physical need in me (can you feel your biological clock?) to have another baby. It’s something I feel much more acutely than I ever did before I had Alex.

Alexandra was the most wanted baby ever and it’s a miracle she’s here and alive and healthy and just absolutely wonderful all round. It’s even more of a miracle that I’m here to enjoy her. I think this a hundred million times a day. But I can’t help thinking about what might have. How might life with two have been different. Would we be trying again yet? Would we have got pregnant really quickly again? Would I get to be fully involved in (and maybe even enjoy) the newborn stage the second time around?

There’s so many questions that I can never have the answers to and there’s a whole lifetime of expectation that I have to drop. I just have to move on and get over it and deal with it. But one of the things making that even harder is the wealth of people queuing up to ask me when we’ll have another. Obviously those very close to me knows but anyone outside of that immediate circle seems to be popping up right now to ask the question. It’s like a timer’s gone off and now my baby is ten months old everyone wants to know when number two will be here.

I usually just give a short ‘there won’t be a number two due to medical advice’ sort of answer but every time it breaks my heart a little bit. I can’t even begin to imagine the pain of a couple unable to have children or who’ve lost a child. I wouldn’t ever compare myself to them. But this hurts too. It’s very real for me, the sadness, the sense of losing out on something I’d almost taken for granted I could have. I try to remember there was never any guarantee of number two but I know a ‘no’ is not the decision I would have come to.

The trauma of what happened to us has become much more acute over the past couple of months and I feel much worse about it than I did in the immediate aftermath when I was fighting to get physically better. It will take a long, long time to heal but my worry is I will never fully accept the decision my illness made for us about not having another child.

Harriet and Alexandra x