Days 771–1096: three years on!

Today is Hugo’s third liverversary!!!

I can’t quite believe it’s actually been three years since the transplant. Every moment of that day is still etched in my mind like it was yesterday; looking back it honestly feels as though time has simultaneously flown by and stood still. I’m not sure that feeling will ever really leave me. I’m still so tremendously thankful that Ross was able to do what he did, to give Hugo the greatest gift he’ll ever receive (although I reckon if you asked Hugo, he’d insist that the best gift he’s had is actually his flying Blaze toy!), and that Hugo was given the chance to lead the wonderful life he does. And I’m so grateful for the incredible NHS teams that have looked after him since he was eight weeks old, and got him to where he is today. He’s reached the point where if you didn’t know about it, you would never be able to guess what he has been through in his life; even his scar, the only physical clue, is hardly noticeable now. It all totally blows my mind, and there will never really be enough words to convey properly how it makes us all feel. It’s safe to say, we’re so lucky for the last three years of happy memories, and so proud of how incredibly brave and stoic our boy is.

Generally, life has been incredibly normal for us as a family since I last found the time to sit down and write. Hugo is learning and developing as a three year old should. He is bright, funny, confident, creative and so gloriously loving, and he is equally strong willed, assertive and can be bloody difficult when he wants to be. Medically, things have mostly been on a very even keel; his last clinic at King’s in January went perfectly, and his routine bloods have been consistently great. We’ve even been able to stretch them out from every six weeks to every eight weeks, which is a great step in the right direction for him. The fact he’s been doing so well from pretty much every angle has allowed us to relax enough to let him experience some of the things I’ve always felt too nervous to let him try before – namely, soft play. When we were on holiday in April we finally took the plunge (and some very deep breaths) and let him loose in the soft play. Of course, he LOVED it, and by the end of his third day of pretty much living in there, even I was able to relax while he was wearing himself out playing to his heart’s content. And when we packed up and headed home, I felt happy that we’d finally done the soft play thing, and that actually, nothing bad had come of it.

Or so I thought.

We’ve always known that life isn’t necessarily going to be plain sailing for Hugo. Even with how well he is doing medically, he is still potentially vulnerable to a lot more than other children of his age. It’s the main reason we’ve taken baby steps over the last three years to normalise his life, and why I’ve always avoided soft play centres – to me, they’re just germ factories, to be avoided. One illness that is a major red flag for post transplant patients, and an almost inevitable nightmare for us as parents, is chicken pox. Post liver transplant, chicken pox can be very dangerous; the virus itself can attack the liver, cause rejection, and lead to secondary complications such as pneumonia, bacterial infections, and so on. There are standard protocols from King’s of how to deal with either potential exposure or actually catching it, both of which require hospital trips and, in the case of catching it, an admission for IV treatment. In our minds, it’s up there with one of the worst childhood illnesses he could be exposed to.

So when I got Hugo out of bed a couple of weeks ago to find him covered in blister-like spots, my stomach all but fell through the floor. I wracked my brain to try and figure out where he’d picked it up, but pretty much everyone that we’re close enough to spend time with knows how risky chicken pox is, and they tell us if there’s even chance he’s been exposed. Based on the timing of when he came out in the spots and the incubation period, there’s only really one place he could have caught it: soft play. Of course. Urgh.

I packed a bag, knowing that this meant an admission and a very full on and probably very difficult week. There was just no doubt about it. But somehow, Hugo managed to dodge being admitted overnight. He was so well in himself (he actually found having chicken pox utterly hilarious), they didn’t think he needed the treatment and monitoring that we had been so certain he would have, so we were sent home with a prescription for oral acyclovir to start the following day if he worsened. He remained so well (leaving to one side the nasty tummy bug we also had that week) that apart from a second hospital visit for bloods, he rode it out at home on the oral meds. Of course, we were relieved that we weren’t staying in hospital (for one thing, I realised very quickly that having to keep an active, curious and playful three year old occupied while in hospital isolation was a LOT harder than it was when he was an immobile baby!), but I have to say there’s a little part of me that I think would have found it easier to cope if the treatment had been by the book.

After Hugo’s transplant, as part of our education in how to manage his health we were given a little yellow book which outlines various rules and protocols we need to follow if and when he becomes ill. But Hugo has, so far (and always, always, touching wood), seemed to go against the protocols. In fact, his only admissions post transplant were when he was being tested for PTLD at King’s in late 2015/early 2016. Every other time he has had a temperature or shown signs of becoming unwell, we’ve been advised to take him to the GP and manage his symptoms at home. Don’t get me wrong – the fact that he is allowed to fight so much on his own is amazing, but it also puts me a bit on edge, as I don’t really understand why it is different for him. I know that part of it will be down to the fact that he is on such minimal medication, and also possibly because he has now developed a bit of a track record for not needing admissions, but we just don’t really know. There’s a niggling part of me that worries that he’s almost been too lucky, and questions whether he can carry on being so well indefinitely; I’m frightened that he’s going to use up his luck one day. I actually asked the consultant at his clinic last summer this exact question about chicken pox – whether he would be allowed to fight it if he caught it, given how well he seemed to be doing. The answer was a firm ‘no’, as the risks are still considered too high. So the fact that when he did actually come out in chicken pox, he was allowed to fight it – and he fought it so well – has both confused and amazed me. He is due another set of bloods this week to make sure his liver functions have all returned to normal (one has become a bit high with him being so poorly, so we have to keep a close eye to make sure it’s nothing sinister), and after that we can hopefully draw a line under chicken pox for good. Fingers crossed.

Even though Hugo has coped typically well with being poorly, I don’t think I’ve struggled as much mentally or emotionally since the early post-transplant days as I have done in the last few weeks. I know we are incredibly lucky that this side of his life is so rare, and I am very, very grateful that his life since transplant has involved much less medical intervention than we imagined would be possible at this stage. I’ve taught myself to try and not feel too sorry for him, or for us, not to wonder ‘why him’, because I know it achieves nothing. Every time he has bloods it breaks me a little, but I always try and keep it together (in front of him, anyway) because I have to; I’m his mum. I have to be strong for him. But it’s not always easy. And during these last few weeks, it’s been really hard for me to wrap my head around everything.

I know it’s ok to feel like this at times, to struggle and feel totally overwhelmed by how totally bloody unfair it is that Hugo’s life isn’t as straightforward and free of pain as it should be. But I also know I can’t let the moments when I do feel like this take over. Now he’s feeling better I’m picking myself back up, and I’ll keep on keeping on like I know I can. And today, his liver birthday, just reminds me that even though at times life can be totally shit and unfair, my superhero boys have filled it with so much light, love, laughter and happiness that I know everything will be alright. We are just so lucky to have our Hugo, and even during the darkest hours I will never stop being thankful for him, and for his daddy.

As for soft play… well I’m hoping that when this has all settled down again, I can hold my nerves and let him go again. I don’t want his life to be restricted by his transplant (or my fear or what might happen). As hard as it might be for us to know that certain things might put him at some kind of risk, life is for living; reaching amazing milestones like today is a big reminder of that.

 
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Days 589–770: close enough to perfect

I’ve never been great at New Year’s resolutions. I know how useless I am at sticking to them, so I generally don’t bother. Last year, however, I decided that I would make some resolutions. They were mostly little things – the standard pledge to keep in shape (miserably failed here), remembering to take my make-up off every night before bed (awful habit I know, but now I mostly remember) – but one was to start writing more regularly again.

Well, that didn’t go very well, did it?

The truth is that all the while Hugo is doing so well, I feel a bit conflicted about keeping the blog going. It is tied so intrinsically to the torment of his first year that it almost feels farcical to keep it going. Some people agree with me – it should be left in the past, and life should move on. But more people tell me that there are so many reasons to keep it going, when I can. The biggest reason, aside from the help that I know it gives to other families who are on the same path as us (some wonderful families from the other side of the world have reached out to me to thank me for giving them something to hold on to when they staring to the same abyss at the start of their BA journey, which makes it all very worthwhile), is what it will give Hugo when he grows up. Ross is one of my biggest supporters here – he wants me to keep documenting our journey so that one day, when he is old enough, Hugo will be able to find the answers to the questions he will have. Answers that he will deeply need. And that, frankly, is more than enough of a reason to keep it going.

So far, I haven’t really done a huge amount of processing about how everything he has already been through, and will continue to go through, will affect him as he grows up. Both Ross and myself are extremely conscious that it’s not going to be easy (at least to start with) for him to process, and for us to help him understand it all. He’s already aware that he has to take medicine every day, and that when we go to the hospital he has to sit still and be brave for the doctor, and that he’ll have a plaster (or sometimes four) on his arm after. But when will he realise that this isn’t ‘normal’? At what age will he start to ask questions about this – and how do we answer them?! How do we start to explain to a child the reality of why he has the scars he does, what his medicines mean, why he has to take them when most other kids he knows don’t? When do we even attempt to try and explain to him that he has a piece of his daddy’s liver in his belly? How do we give him the confidence to be proud of what makes him different, and protect him from those who suggest otherwise, who might make him feel ashamed? How do we make decisions for him that we know could potentially put him in harms way, but that we don’t have much of a choice over – primary schools, for instance; do we send him to a tiny school which could offer better short term protection against the risks he faces, or do we send him to a larger school, knowing that he could well be at greater risk here, but equally knowing that socially it would be preferable, and that it will probably ease the risks longer term? It’s still a couple of years until we need to answer that particular question, but as you might be able to tell, I’m already borderline obsessing about it – and I have no idea how we’re going to find the right answer.

That’s what worries me about looking to the future – there is no easy answer, just a lot of conflicting possibilities; protecting his health vs living life to the full. Sure, they’re not mutually exclusive, but they clash. Regularly. We’ve just got to find a way to make the right choices for him, and teach him to do the same for himself, when the time comes. We’re much better at balancing the risks now; he’s been regularly going to a playgroup since April (which tested my nerves but was so worth it; he LOVES it), but I still can’t quite bring myself to take him to a soft play centre. I hope I’ll be brave enough to, one day, but as much as I desperately want to just be able to let him go off and do all these things without a second thought, it simply doesn’t work like that. It’s something we’ve got to figure out as each decision comes along, all the while hoping that he continues to beast the hell out of being a post-transplant patient and confound the doctors who treat him.

My last blog was posted the day before Hugo’s last routine clinic at King’s in January (incidentally – this post is going up just a few days before his next one). Thankfully, it went incredibly well; the consultant we saw actually called him a miracle! He explained that Hugo is a bit of a rare case; they don’t expect to see a child of his age, so soon post transplant, doing so well on so little medication. Somehow, his body seems to have balanced itself beautifully (for now – TOUCHING WOOD ALWAYS). Ross thinks it’s because the liver is so genetically close to his own DNA. Whatever the reason, he gives the professionals the jitters a bit, and they seemed genuinely amazed at how well he was doing. All of his blood tests since then have been perfect; he is doing SO well (see above disclaimer). And we couldn’t be happier about it. We’re just keeping all things crossed that next week brings the same results.

Away from liver life, Hugo’s continued to develop, learn and grow (literally – the boy is SO tall) at the rate of knots. Honestly, he is like a sponge; I can’t even begin to list the new things he can do, say or sing now. All I can say is he makes us burst with pride at every turn. I just love being able to have proper conversations with him now – my current favourite is when he asks to “build a plan” in the morning so he knows what we’re doing that day, and then when he races to the door when Ross gets home from work so he can tell his daddy what we did. Barring the odd mishap here and there, he is pretty much potty trained. And even though he still has his moments (yep, the tantrums are still hanging around. Ugh), he is just so sweet and loving that he can almost get away with them.

With nothing in the liver world preoccupying us in the last six months, we’ve managed to fit in quite a lot. Most of the time has been taken up renovating our new house; a total top-to-bottom overhaul in eight months was not an easy feat, and not one I intend on repeating any time soon (if ever), but one that has been totally worth it to create our perfect family home in time to relax and enjoy summer. Hugo had his second liver birthday on June 5th, which was lovely and low-key. Ross graduated with his NEBOSH diploma – given that he started his studies after we found out I was pregnant with Hugo, and everything that has happened since then, it’s an understatement to say this is an amazing achievement, and we are all beyond proud of him. I took a group of colleagues to volunteer at the Ronald McDonald house at King’s, which was awesome in every way possible. We’ve just made some wonderful memories with Hugo, our family and friends; we’ve even fitted in a couple of cheeky child-free nights just to add to the sense of ‘normal’, something I genuinely thought at one stage I’d never feel comfortable doing.

Even with all of the many positives of the last six months, I still face internal battles about so much on a daily basis that can sometimes put a downer on how I see things; that stop things being perfect. Barring sharing the odd Facebook post, I try to keep them private; they can be hard to talk about without coming across as a sympathy-seeker (or so it feels) – but if I ignored them here, it wouldn’t be true. One of my biggest struggles is whether people judge me, judge us, for the decisions we’ve made about Hugo. Decisions which, I have to say, we believe are what’s allowed him to thrive and stay well enough to the point where we can relax the rules and live life with more of a carefree attitude now. I certainly don’t feel like we should apologise for the fact that we’ve taken the time to ‘normalise’ Hugo’s life slowly, at his (and sometimes our) pace. I also know that what other people say or think doesn’t matter – we know the truth and reality of it, and those who get it don’t question it – but it still upsets me. I just need more confidence, to have courage in my convictions and stop second-guessing myself, particularly when it’s not needed, because I know these battles aren’t going anywhere. I’m working on it.

Looking forward to the next few weeks, we’ve got lots to be excited about. Thankfully, we’re rather good at keeping busy so I don’t have too much time to overthink these things (although I’m sure Ross would disagree!); some much needed work-free family time, weddings, a trip to the New Forest, a new baby due in the family (not ours, I hasten to add), plus lots of picnics, hours splashing in the paddling pool, riding scooters along the seafront and hunting for goblins in the woods… just lots of memories to be made. Me, my handsome, healthy boys, and our wonderful family and friends.

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My handsome boys. My world.

Who needs perfect when you’ve got that?

 

Happy birthday Hugo!

To Hugo

My little man. My squidge. My baby.

Happy birthday! You’re a WHOLE YEAR OLD!

And boy, what a year it’s been…

A year ago, I thought I was ready for you. I didn’t think you’d arrive quite so early, and end up sharing a birthday with your cousin, though. I knew that motherhood was going to be tough, that it would change me. But really, I had no idea; how could we have known what was to come a few weeks after you were born, seemingly a happy, healthy little boy?! Before you came along, I never knew my heart could hold so much love; that I could love in a way that you physically feel, that can make you cry for no reason, can make you feel winded (all in a good way, I should add!) I never knew that my heart could break so badly, into so many pieces. And I never knew that I could be as strong as I’ve been; as I’ve had to be. There’s one thing that’s got me – and your daddy – through it all. That’s you, Hugo.

You’ve been through so much in your 12 months of life, so much more than anyone ever should. And even through the really shitty, tough times, you’ve been incredible. So strong. So resilient. So patient. So inspiring. So much so that, actually, it breaks my heart a little. Because you shouldn’t have had to be all of those things at your tender age.

When I was told to expect you to be a different, much happier, baby after your transplant, I kind of laughed it off a bit. There’s no denying that you were very, very poorly. But you never showed it; you’d already been through four surgeries, five months of steady deterioration and countless weeks spent in hospital, and all with a smile on your face. Even when I was carrying you down for your transplant, when your daddy was already on the operating table, you were smiling away. I honestly couldn’t believe that you could get any happier. But my goodness – they were right! As the days, weeks and months have passed since you got your daddy’s liver, you have become SO different. You’ve become you. Not poorly Hugo, Hugo who lives in hospital, yellow Hugo with a giant belly. Just YOU. My handsome, cheeky, happy, giggly, hungry, loving little boy.

The thing is, while I wish I could change the path your life has taken in so many ways, there is one thing that I would never, ever change, and that’s you. You’ve taken your torrential first year well and truly in your stride. Much better than I have, for sure. Even though you were the one lying in a hospital bed, just about surviving on a failing liver, you kept our spirits up. You kept us laughing, and you kept us loving. You gave us a reason to keep going when everything felt so bleak, and I felt so trapped, that I didn’t know what to do or where to turn. How you’ve been strong enough to get through all that’s been thrown at you, and to do it all with such character, just blows my mind. You’ve been such an inspiration; you’ve taught me so much about life (and about myself), when it should have been the other way round. It’s not how things should have been, but you’ve made me strong enough to face what has to happen in our world now, and for that I feel truly lucky.

And now, you’re becoming a clever, sweet, cheeky, funny, cute, good-natured, charming little boy. You’re learning so much every day, and the excitement you show at each new achievement is just amazing. It doesn’t matter whether we’re just hunkered down at home with the curtains drawn and CBeebies on the box, or whether we’re off out somewhere, you give us so much joy. It’s such a privilege to be your mum, to be the one to spend the days with you. You take my breath away every single day.

So thank you. Thank you for being so amazing. Thank you for being so strong, so loving, for looking after me, and for making me who I am today. And thank you for being you.

My precious boy - look how far you've come <3
My precious boy – look how far you’ve come ❤

Happy birthday, my darling boy. Here’s to many, many more.

Love you, always

Mummy xxx