Days 177–274: happy days!

I don’t know how it happened this quickly, but today Hugo is nine months post transplant. Nine! We can now say that Hugo has officially been ‘healthy’ for longer than he was poorly. I say ‘healthy’ because things aren’t quite settled down yet, but still – how bloody incredible is that?! Incidentally, it’s also just over a year since we were first told that he would need a transplant, and also just over a year since I first published my blog.

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Happy to be nine months post transplant!

It never really occurred to me that it was only just over three months between us being told Hugo needed a new liver and the transplant happening. It certainly didn’t feel like it at the time, but three months is not that long. Obviously, when you’re in the whirlwind of end stage liver disease, every day can feel like a year in itself, but now looking back at how quickly it really happened, it seems completely unreal. We went from having a poorly but stable baby in March, to living in hospital by the end of April on a continuous feed, regular albumin infusions and ascitic taps, with two failed attempts at the transplant in May before it finally happened at the beginning of June. What really strikes me now, though, when looking back, is how calm everything really is at the moment. Sure, things still aren’t completely settled, but it the insane and hellish rollercoaster of last year finally seems well and truly behind us.

There have been various points in the months since Hugo’s transplant that we’ve felt like this. Life begins to take shape again, we start to relax and then something happens that dumps a great bit load of uncertainty and anxiety straight back into the middle of our lives. And even though I know that the bumps over the past few months are really nothing in comparison to what we were fighting before, they can still hurt. Because essentially, all we want is for Hugo to be healthy, to be happy. And at the moment, touching wood, he is.

In fact, he’s doing so well that we’ve got a plan in place again to get his Hickman line out. Of course, there’s a million and one things that could change and prevent this happening again – not to mention Hugo’s tendency to never, ever play by the rules – so we’re not going to get our hopes up too much (unlike last time) but the fact we’ve got a plan in place again is a massive step forward in itself. The last time this was being discussed was back in September, before his EBV became a real issue. Now, though, his bloods all seem to be heading in the right direction – I’m convinced that the new iron supplement he started a month ago is behind the improvement in his results; I don’t think King’s would ever officially agree with me, but given the consequences of anaemia can include low Hb and becoming more prone to infection, it seems to add up. Three weeks after starting the supplement, his Hb and albumin are back to normal, and the EBV is now the lowest it’s been since it first poked its nasty head up last summer. And the other really happy news is that his histology (biopsy) results from last week are now back and are all good. There are some tiny traces of EBV DNA in some of the cells, and a little bit of inflammation in the oesophagus relating to reflux, but most of the results are EBV-negative. They can effectively all but rule out PTLD, which was one of the major reasons the line was being kept in. It feels a little bit like Groundhog Day – they thought they had ruled it out in November, but this time it feels more believable, because this time he actually looks and feels like he really is well. And even though he’s been off his main immunosuppressant since November, his liver function is still amazing. So IF his bloods next week are good, they will be stretched out to monthly. And IF the next set is ok, and his ultrasound and review look good, then they will book him in for the line to come out. He’ll have one more set of bloods before the surgery date, and IF they are stable, then we’re going ahead. They are three great big fat ‘ifs’, but they’re tangible hurdles now rather than a never-ending stretch of not knowing. It’s a better, rather brilliant, place to be.

When we found out at his routine clinic in January that Hugo was anaemic, we did a bit of research about iron and the supplement he was given. Listed among the signs of anemia is lethargy and lack of energy, but he didn’t suffer from either of those things. The thing with Hugo is that, given that he became progressively poorlier from birth up to his transplant at eight months of age, we’ve never had a real gauge for how much energy he should have. He just kind of got on with whatever reserves he had, so every time we’d get on top of one part of his health and he’d improve, we’d kind of assume that we’d reached his optimum. So when King’s tested for the iron levels and asked if he had been lethargic, we said no. Because we really, truly didn’t think that he was – he’s always been so playful, so active, we had no cause to think that.

Well, it turns out we were wrong. So, so wrong. At every stage of his life so far, he has amazed us with his tenacity, his jollity, his sheer strength. Now though, he is Hugo – but powered by rocket fuel.

His physical, cognitive and behavioural development has taken such strides forward that he’s pretty much hitting most of his milestones now, and following the normal patterns of mental leaps –given the obstacles he’s faced in his first 18 months, that blows my mind a bit! He now has some serious pace on him (he is all but running on his hands and knees), and is getting so close to walking; before the iron, he was only just able to pull himself up – and he didn’t enjoy it much at all. Now, he is cruising around the furniture and is taking steps with our help. Things seem to have just clicked into place mentally, almost overnight. He really knows his own mind now – and he certainly knows how to tell us exactly what he wants; he mostly enjoys being upside down, playing hide and seek in his tent and throwing balls all around the flat. He is a real bookworm, and loves cuddling up reading stories with us. He is a master stacker of all toys. He sings, he kisses, he chats, he claps, he cuddles, he climbs, and he laughs – all the time. He’s just incredibly self contained and incredibly happy. He’s also becoming increasingly cheeky and naughty, deliberately disobeying us when we tell him not to do something. He bites us, he throws tantrums and he grinds his teeth. As much as I don’t want a naughty child, even all of this makes me very happy (apart from the teeth grinding. I can’t STAND it). Partly because he has a real cheeky, knowing glint in his eye when he is doing it – we really need to learn to tell him off as he just makes us laugh too much. But mostly, it makes me happy because it is just completely and utterly normal.

These are the kind of things that I expected to happen as a mum. They’re the kind of things that our friends and family experience day to day. It feels like we finally have something they can relate to with Hugo, and us with their kids. That’s what’s really lovely about life at the moment – it feels like we’ve finally got ours back. Yeah, it’s not the same as it was, and we’re still a bit restricted, but our new version of normal is actually bloody great! And we’re slowly starting to relax in terms of what we feel comfortable doing with Hugo – he’s having more play dates (and loving them – he’s a very sociable and friendly little boy), but we’re still avoiding baby groups and soft plays until at least after this flu season. We’ve got a good balance of routine and variety, and Hugo is thriving on it. He’s no longer spending 24 hours a day with me, and although it’d have been nice for him to have missed me just a little bit more when I went back to work in January, it’s been really good for him. Good for both of us, actually – being his mum is the single most amazing, fulfilling job I could ever have, but I totally lost all sense of myself when I was a hospital mum, and it’s nice to have a bit of ‘me’ back now. He absolutely loves spending a couple of days a week with his grandma and having more time with his daddy again, and what’s even better is he’s always really happy to see me when he’s not been with me for the day.

So yeah, life is pretty good right now. This is, without a doubt, the healthiest and happiest Hugo has ever been – and in turn the happiest Ross and I have been, too, in a long time. It’s impossible not to smile when you’re around that little boy – he is just so full of joy and life. I have to keep reminding myself we can’t take this for granted, that there are no guarantees, that we don’t know what may come around the corner; heaven knows we’ve had the rug pulled from beneath us enough times now. But equally, we’ve been through a hell of a lot to get to the stage we’re at now, and I just want to enjoy it while it lasts.

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Happy Woodings xx

Days 110 – 176: excuses and reflections

Well. This is a bit awkward. I seem to have taken an unplanned and unintentional two months off from blogging. I feel as if I owe everyone a bit of an explanation.

The last couple of months have been a bit of everything and nothing. Of course, things have been happening (mostly good with some bad), but as the weeks have passed by nothing has really felt blogworthy. Each time I sat down to write, I faltered. I started questioning whether or not I wanted to continue with it. I’ve been back and forth on it so much, I’m sure Ross and my mum are both sick of me debating with myself over it. Essentially, because this blog means so much to me, I don’t want to ruin it by carrying it on when it’s run its natural course. I’m not sure what its natural end would be, but after Hugo’s birthday, with little on the horizon apart from just being his mum, I wondered whether I’d reached it. Although it’s entitled ‘Life of a Liver Mum’, it is totally centered around Hugo, so when there wasn’t much to say about him I worried that the next post would be bland and boring, and I’d end up ruining something quite special, so I put it off. I worried that starting to write about something other than Hugo might turn it into just another generic mummy blog. Don’t get me wrong, I follow a few of these blogs, and I find them amusing, if a bit ‘trendy’; I just don’t want my blog to trip over and fall unwittingly into that category.

Then there’s the flip side. I truly love writing it. It’s become really precious to me; it’s given me such a source of comfort, an outlet for everything that’s happened this year, and it’s been such a positive thing for me. I know I’ve helped others by sharing our experience; being contacted by other liver mums (or their families) to say thank you has been incredibly touching and humbling. I’ve been contacted, too, by mums who are years further down the line than we are to reassure me that we’ll get there, it’s normal to feel the way we do, everything will be ok. It’s also heart-warming to know that there are so many people (friends, family, nurses and total strangers) invested in Hugo, who encourage me to keep going. And all of that spurs me on to keep doing it.

Even though I haven’t quite decided what to do in the long run, one thing I have decided is that I wouldn’t want to stop writing without actually telling people these reasons. I would want to explain. I’m hoping that I’ve achieved that today. But right now, I’m still not ready to wrap it up for good, so you can take this as a precursory explanation, for when the time does come. It’s quite likely, though, that even if I’m carrying on with the blog, I won’t be posting as much as I have done this year. I have, however, set up a Facebook page to support the blog. Please feel free to find it and follow 🙂

It probably goes without saying that the time I’ve spent away from the keyboard has been a bit up and down. To start with, it was very up. In fact, very little was happening that was worth sharing – which is another excuse for not keeping it up to date. Hugo was making the most of being at home, and I was getting on with being his mum; we were just living our lives. It felt quite normal, and not blogging felt like a part of that. We had our longest ever stretch out of hospital (four glorious months with nothing but scheduled check ups). We had our first holiday with Hugo; a wonderful few days spent in the New Forest with my family. Hugo has come on in absolute leaps and bounds, being a little treasure and giving us so much joy. I may be a tad biased, but I have to say he’s pretty clever. He’s building an increasing repertoire of animal sounds – so far he’s nailed monkey (obvs) cow, snake, lion and, most recently, sheep. He’s becoming increasingly independent – and bossy! He definitely knows how to tell us what he wants. I can only guess who he gets that from… He’s become even more funny and cheeky, if that were even possible. He’s finally sprouted his first teeth. And he crawls! Forwards, not just backwards (as he did for a few weeks). He’s bloody good at it, too, and it fills us with so much happiness seeing him scurry across the floor. My little Mr speedy. Major physical and developmental milestone: smashed. The fact that he decided the perfect time to start crawling was the day before we were due to take him to be admitted back onto Rays of Sunshine ward just made us laugh; his timing, as ever, is impeccable.

Even though we’ve had a great bit chunk of positive and happy in the last two months, the last few weeks have had their fair share of stress and upset. Hugo has been getting really miserable when going to the toilet, something we’re trying (and so far failing) to help him with; even a strong dose of laxative at hospital as part of his bowel prep for a procedure last week hasn’t really helped. It’s really affecting his moods, which is in turn upsetting for us. Thankfully, we’re still getting good glimpses of his happy, cheeky self. It just feels like an unnecessary discomfort for him. Then there’s the blip we’re currently navigating. We spent five days last week admitted on Rays of Sunshine (although it felt like a LOT longer), where Hugo was nil by mouth for four consecutive days for three procedures (MRI, endoscopy and colonoscopy, and a CT scan, all of which involved either a sedative or a general anaesthetic) to look into possible PTLD (as his EBV level shot up to 7 million) and an issue with his portal vein that was picked up at his last clinic appointment at the end of October, as well as a blood transfusion. As much as it was a shock to the system being back in the nursery, it didn’t take long to settle back into it, and it was really lovely to see Gill, Justine, all of the nurses and the rest of the team on the ward. We were also lucky to catch up with some of our liver family friends from our previous stays on the ward. Everyone was so surprised at how big Hugo was, how amazing he looked and how much he’d progressed, so even though I was really bummed to be up there again, I also felt buoyed up by them. I will always feel lucky to have the friendships and trust we’ve built up there.

Despite the week being more stressful that it needed to be, right now things are starting to look up. We heard last night that Hugo’s EBV is now down to about 134,000 (still a high reading, but MUCH improved), and the consultant is happy that he isn’t developing PTLD. It goes without saying this is a HUGE relief; having a potential cancer developing after everything Hugo has been through was really taking it’s toll. We still don’t know what is happening with the vein; it might need intervention or just more close monitoring. This blip isn’t quite over, but we’re feeling on a steadier foot, and I’ve started to see the light at the end of the tunnel. I’ve really struggled with this blip, which seems odd as Hugo’s been much, much poorlier in the past, but I guess I’ve felt the effect of that rug being whipped out from beneath us even harder after such a long and happy stint at home. Hugo still isn’t quite right, but he’s getting there – he’s sleeping better (which in turn makes us much happier), his appetite is picking up, and he’s getting happier. And, very importantly, his liver function is – and I quote – “remarkable”. It all helps.

This week, apart from spending pretty much the whole week glued to the phone waiting to hear Hugo’s results, I’ve been reflecting a lot. It was a year ago today that we found out that our two-month-old baby had Biliary Atresia. At the time it was, without a doubt, the worst day of our lives; since then, we’ve had our worst day time and time again. It would be so easy to spend today focusing on the fact that a year ago we essentially lost our healthy baby; a year ago, he became chronically ill. I’ve spent so much time over the last year mourning his health, him being ‘normal’, and not knowing whether he would survive, and it’s made me tired. Instead, I’m going to spend today being thankful for the fact that he’s still here, and in the grand scheme of things, he’s very well. I want to celebrate how far he’s come; how far we’ve come. Celebrate what makes him special – and there is so much that does. The fact he has his daddy’s liver – there aren’t many people out there lucky enough to share something so magical. The fact that he’s proved time and time again that he’s strong, and that he’s made us strong. The fact that he hasn’t been defined by his illness; instead, he’s defined himself with his strength and courage. The fact that a year ago, we suddenly couldn’t see into his future, and now we are living life as we should have been all year. The fact that he’s learning and developing as he should be, in spite of all the obstacles he’s faced. The fact that it’s taken a bloody long time to get to where we are, and it’s still not a smooth ride, but we’re happy.

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My gorgeous family, a year on from diagnosis 🙂

I think all of that is well worth celebrating. Here’s to Hugo – my hero.

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