It feels like only yesterday that we were holding you in our arms for the first time, overwhelmed by everything you already were before you’d even opened your eyes for the first time. From the moment you entered our world, you filled a hole that we didn’t even know needed filling. It’s been so hard at times, and I don’t think I’ll ever stop feeling the pain and injustice I feel when I think about everything you have had to endure in your four years of life so far. But my goodness Hugo, the way you have dealt with everything that’s been thrown at you at such a tender age is, truly and simply, inspiring; even in the hardest of times, you’ve somehow made it all seem so easy. And while I wish I could take away all of the nastiness, the relentlessness, the challenges your liver disease brought to your life, I wouldn’t change who it has made you for even one second.
Because, my darling Hugo, you really are a superhero, and I’m so proud of the little boy you have become.
I love the way you see the world, the way you question everything, the way you learn – and the way you continue to teach me about life, too. You have opened my eyes up again to all of the beauty around us, and you’ve reminded me to be curious, to find joy in the smallest of things. To, quite literally, stop and smell the roses. You are so kind, so loving, so thoughtful, and you make us laugh constantly. And even though you can (and do) drive us completely up the wall with your tantrums and stubbornness, I actually feel very proud to have such a confident little boy who feels secure and able enough to stand up for himself the way you so often do. Being your mummy is an absolute privilege, and I’ll eternally be grateful for the way in which you fill our days with so much happiness and love.
More than anything, your strength and bravery fills me with so much admiration; how am I lucky enough to have a son that can not only cope with all he has to, but does it all with such wisdom and character – and all at just four years of age? I don’t blame you for hating blood tests, and I don’t blame you for fighting against us – sometimes quite literally – with all of your strength to try and get a break from that side of your life. But I love so much the way in which you bounce back, the way you tell the nurses they should say sorry to you afterwards, the way you somehow always leave the hospital with a smile and a story to tell; the way that you deal with it all with such maturity – way beyond your years. It blows me away.
You just fill us with so much joy and pride, Hugo. You haven’t let anything that has happened in your life define you, and I admire you so much for that. And I can’t wait to see what the next year has in store for you, because if the last four are anything to go by, I just know it’ll be an amazing adventure.
Happy fourth birthday, my darling boy. You are my inspiration, my reason, my world.
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.
Three years on – what a difference!
He adores Blaze!
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.
Soft play anxiety!
Pen control practise
That smile though
Happy holiday
Too cheeky
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.
Poorly poxy sausage
But he kept on laughing even at hospital!
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.
He loves a game
It’s a Blaze takeover!
Down by the sea
Living his best chocolate life
A little number work before bed
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.
My superhero
These two
My world
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.
In the UK, 36% of the population are currently signed up to the organ donor register. There are around 6,500 people waiting for a transplant. There are about 5,000 people who die each year in circumstances where they could donate their organs. And approximately three people die each day waiting for a transplant.
These are the stats. And let’s be honest – they suck. We need to change them.
Organ donation really is a miracle; it’s a simple fact that Hugo would not be here today without it. But as the stats above allude to, there is a real shortage of organs. Too many people are waiting for too long for their gift, because too many people are saying no. Many people believe that all you need to do to donate your organs is to be on the organ donor register, but this is not the case. It’s a great starting point, of course, but it won’t guarantee your wishes will be fulfilled. If you die in circumstances where you could donate organs, your family also needs to give their consent. And sadly, less than half of the families approached about donating their loved one’s organs agree to donate if they don’t know that was their relative’s wish.
As you’d expect, given our journey, that question would be a no-brainer for us. But for many families in that situation it can actually be a real burden; having to make a big decision at such a difficult time cannot be easy. We mustn’t pass judgement on the families that say no; we don’t know them or their situations, their reasons. But we can try to make their decisions easier, by talking about it. By having the conversation with our loved ones. It really is a matter of life and death for so many people – it may sound like a meaningless platitude, something that’s “easy to say” (it’s really, really not, by the way), but it’s the real, harsh reality of it.
Unfortunately I know this because last year, my extended family lost two very young baby girls within just a few days of each other. Daisy, part of my liver family, needed a liver. Marnie, whose mummy is one of my oldest childhood friends, needed a heart. Two families lost their darling girls – daughters, sisters, nieces – because their new organ simply didn’t come in time. These beautiful girls were just months old. They should still be here. It still breaks my heart to see their parents and families having to carry on without them. In spite of their heartache, both families have done wonders in keeping Marnie and Daisy’s legacies going, campaigning for awareness and a change in the currently opting-in system (something I’ve talked about before), and not letting their babies’ lives be in vain. Marnie’s parents were even able to donate some of her heart valves after she died; they managed to give hope to other families when their own had been shattered. Their strength is simply inspiring, and their girls will never be forgotten.
Marnie Brace, 10/5/16 – 26/10/16
Daisy Williamson, 14/7/16 – 24/10/16
While we will never, ever forget these beautiful girls, it’s important to spread a message of hope this week for them. To use their legacies to focus us on what we can do, what we can change – and what a positive story organ donation can be, too. Just as Marnie and Daisy’s wonderful parents are doing, many of my liver family are also campaigning and spreading awareness this week. These children are the lucky ones whose organs came in time, even though some of them had agonisingly long waits – Conor waited over two years. These families have been kept together through the strength, bravery and kindness of their donor heroes; mostly strangers but some living donors (like Hugo’s superhero daddy). They’ve been able to reach milestones that they, at one stage, couldn’t believe would happen – first birthdays, first days at nursery or school, passing driving tests. I’m blown away whenever I see how well these kids are doing, especially those we knew closely at King’s – to see them looking so amazing now just puts the biggest smile on my face, and I’m so proud and privileged to know each and every one of these families. Most of these kids are here and living their lives on behalf of their angel donor, and all of them carry a truly special message – that organ donation works, and is so, so worthwhile.
Hugo
Eli
Mali
Sam
Jack
Tilly
Jess
Conor
Albie
Harry
Tiffany
Lilah
We count ourselves lucky every single day that Hugo got his liver in time and that he is still doing very, very well (of course, touching wood). His clinic appointment at King’s back in July was perfect; the email from his doctor the following week simply said “bloods all good – see you in six months”. It still makes my head spin, really – I don’t think that feeling will ever leave me. At eight months old the chances of him reaching his first birthday were getting narrower by the day (after transplant, we were told he probably only had a couple of weeks left), and now he’s speeding towards his third birthday. His life will never be a straightforward one – he’ll always be under treatment for the transplant with regular bloods (the next set is today, gulp) and daily medication. But he is clever, cheeky and funny, strong-willed, independent and full of wonder. And above all, he is here. He has so much fight in him, and is so full of life and love (mostly for Thomas, obvs), and that is all thanks to the miracle of organ donation. It could have been so different, and I’ll never stop being grateful that it wasn’t that way for Hugo.
That’s what this week is about. Please, help us make a difference. Don’t let the world lose another Daisy or Marnie. Sign up to be an organ donor. Shout LOUD about it. Make it known to anyone that will listen – share the shit out of it on whatever social media you have. Have the conversation that could give one more person the chance to live, that could keep one more family together.
Let’s change the stats.
Watch this video from the 2017 Organ Donation Week campaign here:
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.
Morning chill with one of his many trains
We love our beach life
Sharking around at the paddling pool
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.
Post hospital treat! Wowser!
Growing boy
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.
Standard tantrum
My clever sausage
Scooting!
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.
Found some goblins!
Monkeying around with mumma
Daddy and son on their liver birthday
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.
So, 2016 flew past a bit, didn’t it? It genuinely doesn’t feel like seven months since I last sat down to write and update on Hugo… but apparently, it has been. It seems we’ve been too busy working, buying and doing up our new family home and generally just enjoying life to find the time to write anything. Awkward. Sorry about that.
Of course, the real reason for not writing for such a long time is that there has been very little to say. Thankfully. Life has been… well, just ‘normal’. When I started this blog, it was very much a diary and means of sharing our liver journey with the world, and ‘normal’ isn’t very easy to write about. I know, though, that when I was searching the web just over two years ago for something to give me a real, honest account of living with BA, to give me hope in a devastating situation, I would have loved to know that there was a chance of life just being normal again. Something that went beyond the really intense, hospital-bound months pre and post transplant. So here we are.
Happily, we are starting the year on a positive step in terms of Hugo’s health. We’ve gone nearly a full year without a single admission and no trips to hospital aside from routine blood tests and clinic appointments. His blood results have been consistently stable, and he seems to be doing well – touching wood – on few medications. The blood tests themselves are still totally horrendous without the Hickman line, but we’re slowly finding coping mechanisms as we go; ice cream for breakfast and cuddles with his Be Brave Bear worked a treat last time! And even though they’re tough, they’re currently only every six weeks, and the change in life in general since losing the Hickman more than makes up for it – even if Hugo doesn’t quite understand that just yet. He hasn’t had a full review at King’s since July – his next one is tomorrow, and we’re hoping that all the signs from the last few months mean we won’t have anything to worry about; of course, I’m not taking this for granted, and I’ll still be travelling to London with an overnight bag packed!
I’ve been brave – cuddles with his Dino after a blood test
PUDDLES!
In all honesty, I’m a bit taken aback at how quiet things have been on the liver front. It was something that we’d always hoped we’d achieve one day; a semblance of ‘normality’ for Hugo, less of the nasty stuff that inherently comes with liver disease. But I never expected for us to get there so quickly. At risk of sounding like a broken record, I know how incredibly lucky we are that he has done so well since transplant, and that his blips have, so far, been just that – blips. I have to pinch myself quite regularly. I’m also acutely aware that none of this is a given, and that even the slightest thing could tip the balance for him and pull the rug out from under out feet once again. But we just try to manage that knowledge and make the right decisions to allow him to live as full and normal a life as possible while keeping him as protected as possible. It’s a tightrope, but one we’re accustomed to, and one that has worked – so far, anyway. And although we have loosened the reigns quite substantially over the last few months, there is still a way to go.
One of the things I’ve learned in the last few months is that I’ve never really realised of just how serious my approach to life has become. I think it’s pretty understandable and natural, really, for that to have happened, and I also think I’ve done a pretty good job of letting go of the stress and anxiety that comes hand in hand with being the mum of a poorly child – to a point. But last year I got a bit of a wake up call. While it was a good year for us, 2016 also hurt a lot of people. Our liver family lost several children over the year, and one of my school friends also lost her baby girl while waiting for a new heart. I spent much of October and November in a daze, feeling numb after the quick passing of four children, and not really knowing how to process how there could be that much pain inflicted on so many beautiful, innocent children and their families. I also felt guilty about how lucky we are; that Hugo got his gift and is well, and that we now, touch wood, have the freedom and ability to really enjoy life. And even though I know we have been making the most of every day with Hugo, and I genuinely do count my blessings every day, I realised then that in the months we’ve had with Hugo in good health, I haven’t really felt totally free from the prison that the liver disease created for us. Life was just still very serious, when it needn’t have been. It’s not that I’m not happy – I truly am very happy – but more that I’ve forgotten how to ‘be’ happy. If that even makes sense. How to relax, how to laugh. How to enjoy. I’ve decided that it needs to change. No more dwelling, no more letting the ‘what ifs’ rule. No more being serious – when it’s not needed, anyway. Just more letting go, more laughing, more silliness, more variety – more fun.
Monkey finding!
My boys.
Leaves!
Away from the liver side of life, Hugo has just gone from strength to strength. At his one-year review with the health visitor, he was behind on nearly every single milestone. At age two, he was hitting or ahead of his all but one of his targets. No-one would have been surprised if he was still a bit behind, given the start he had to life and the mountains he’s had to climb… but no. There seems to be no stopping him.
His cognitive development has always been pretty strong; one of our strategies during the hospital months was to keep reading to him and playing with him constantly, and generally give him as much mental stimulation as was suitable, and that has paid dividends when it comes to his understanding and ability to learn. Physically, he’s now doing exactly what he should be; he runs, he jumps (mainly in puddles, given half a chance), he dances, he climbs, he kicks balls, he falls over. There was one area, though, that was still worrying me – his speech.
Water play
He loves helping daddy work
Christmas happy face!
When Hugo turned two in September, he didn’t really talk. He could make distinctive sounds, say a few words, and we knew he could understand us, but that was about it. Since then, his speech has exploded at an unbelievable pace. I can’t keep up with what he can say, and he genuinely surprises me every day. He can copy nearly everything we say (cue me having to start censoring my sometimes spectacular potty mouth, especially in the car – ‘you f**king idiot’ has been replaced with ‘oh, silly driver’). He can string logical sentences together, and we can now have proper conversations with him. He loves singing, and most of his songs are now recognisable (and unbelievably sweet), although when he sings the alphabet he invariably skips from HIJ to QRS (and his W is the cutest – ‘double-ooo’), and his current preferred method of counting to ten is ‘one – three – two – TEN’! He’s just so chatty, and he comes out with so many funny and adorable little things every day; my absolute favourite is ‘love you so much’ (‘hello mate’ is a close second). The best part of this is that he’s at that stage where not many people other than Ross and me can understand him. It feels like we’ve got our own secret language. It’s heaven.
There is, of course, a downside to his newfound talkativeness. His attitude. He has well and truly turned into a ‘terrible’ two year old. Major Meltdown Mode has become a regular feature of life, his tantrums can border on the insane, and he’s started having a go at the in-public kicking, screaming and hitting parties. ‘No’ is his go-to answer for pretty much anything and everything you could ask him, and when you offer him something you know he really wants (normally chocolate, the iPad, or anything related to Thomas and his bloody Friends), his answer is a very unenthusiastic and underwhelming ‘OK’ – he may as well just shrug his shoulders. Probably my least favourite thing is his current automatic response when I walk into a room – he just shouts ‘NO! BYE BYE MUMMY’ and pushes me from the room. I know he doesn’t mean it, but still – ouch. And although at the moment I am struggling with how to cope with this new and difficult side to him, I know that it is normal. It’s not us doing anything wrong. And as cheesy as it sounds, even when I’m stressed to the eyeballs by his behaviour I’m still (mostly) grateful that he has the fight in him to behave this way, that he has a strong and independent streak in him. Of course, it’s not all the time – in the grand scheme of things, he is by no means a badly behaved toddler, and even when he is being a little terror he can still somehow make us smile. It doesn’t stop me wanting it to be a short-lived phase, though.
Having a toddle on the pier
Hugo’s second birthday!
So that, in a nutshell, is that. Life is going on, and we’re just getting on with it. Normal.
Two weeks ago, on 5th June, we celebrated the best milestone of this whole liver journey so far – Hugo’s first liver transplant birthday! I remember the disbelief I felt when we’d reached nine months post-transplant, so you can imagine the emotion that came with the first liverversary. I managed to hold it together for a little family party in the morning, but once we’d got back home it hit me and there were more than a few tears shed – happy ones, of course.
What a difference a year makes!
It still sends shivers down my spine, to be honest with you; how Ross gave what remains to me to be the most heroic, loving and generous gift anyone can give in life – the gift of life – to our son, and how lucky we really are, in spite of the blips and bumps we are still experiencing, to all be here and living life together. That feeling of awe of what he did, and the joy of watching his unbreakable bond with Hugo, brings me happiness every day.
In the last three months, life has been hurtling past us. Mainly because Hugo is now hurtling past us; not only has our boy learnt to walk, he is now running around. All the time. Proud doesn’t even come close to the feeling we get when we watch him running around the park, bending down to smell flowers and chasing his ball around. It’s incredible. He has also, almost overnight, developed a total obsession for anything round or with wheels; now, rather than our flat being overrun with all things monkey, we are contending with trains, cars and tracks. He’s taken that momentous step from baby to toddler – you know, the one that makes you burst with pride while also suddenly and simultaneously realising, with a tinge of sadness, that your baby is growing up way too fast. And of course, part and parcel of toddlerdom is the tantrum, which Hugo is most certainly trying on for size now. He knows what he wants (normally Peppa Pig or chocolate), and if he doesn’t get it – especially when he shouts ‘TA’ at us (we can’t fault him for being polite at such a young age, although it makes it much harder for us to stick to our guns and enforce ‘no’) – he can activate Major Meltdown Mode at the drop of a hat. Although it is undoubtedly hard work, I’m also quietly a bit pleased that we have a son confident enough to be a bit headstrong, and – let’s be honest – that we’re experiencing the normal, shitty parts of parenthood as well.
Cool dude running
TRAIN!
The funny thing is, even though life in general has been getting better by the week, in the last few months I think I’ve actually suffered more mummy wobbles than I did during most of his first 18 months. Before Hugo’s diagnosis, I was a completely stereotypical new mum, obsessing about every decision and scared that I wasn’t doing right by him. Then, of course, everything got taken out of our hands and our focus shifted to just getting him through, getting him the treatment he needed to get him home again. In that time, I didn’t really have much of a chance to over-think our parenting methods or choices, and I kind of thought that once we were through the experience I would inherently have the confidence or perspective not to worry like that any more. Well, I was wrong – it turns out that even surviving the storm we have doesn’t give you any immunity to the fears that existed before; even though I can see how well he is doing, and despite the fact that I know there is a much bigger picture to consider with Hugo, I still find myself worrying that I’m failing him somehow.
Whether it’s his diet (my major obsession), his physical milestones or his speech, I seem to be able to find something to worry about on a regular basis. I know in the rational part of my brain that Hugo actually has a quite good and varied diet – he eats loads of fruit, a fair amount of veggies, home cooked curries and broccoli muffins – but I still feel guilty that we buy him Ella’s Kitchen meals, and feed him waffles and nuggets. I know I shouldn’t, but I take it personally that some other kids of his age will eat everything and he doesn’t; I was so determined when he was born that he wouldn’t be fussy, so the fact that he is a bit makes me feel like I’ve failed, even though I know it’s totally normal. With his physical development, I know deep down that there is nothing to worry about – the fact that he is literally running and climbing everywhere now given he didn’t even have a chance to roll until he was about ten months old speaks for itself. It’s amazing, really. But, rather than delete it, I still worry when I get a generic BabyCentre email telling me what a typical 20-month-old should be doing and see a long list of things that Hugo hasn’t done yet. And even though he shows great levels of understanding, I still find myself focusing on the fact that he doesn’t say more than ten words yet, or that he can’t string a basic sentence together, rather than focusing on what he can do verbally.
I know it’s ridiculous, but I can’t help it. Mummy wobbles don’t listen to logic. In fact, they actively ignore the rational part of the brain. It’s not that I’m not proud of him, because I am – immensely – and it also doesn’t matter that I know all of this stuff is very normal; I just don’t know whether I’m doing enough for him as his mum.
Happy Woodings
First proper paddle was a hit!
Luckily, I have a new positive force to reckon with – Hugo’s childminder, Emma. Putting him in childcare in the first place was a really nerve-wracking, but positive, step forward for all of us. The first time we went to meet her I mentioned these worries to her, and she set me straight there and then. She told me to focus on what he is doing, not on what he isn’t, because he will develop differently to every other child, liver disease or not. Straight away I knew that she was going to be a great influence on him and me. The fact that she is giving me reassurance from a new and independent place (she had no involvement in Hugo during his illness, and only knows him as the child he is now) has really helped my confidence, and thankfully Hugo absolutely loves going there – he literally can’t get out of my arms and into the playroom quick enough when I drop him off.
My latest guilt is about his Hickman line. The team at King’s weren’t overly keen on taking it out; they wanted it to stay in a bit longer, but we were reaching a stage where he was pulling at it, scratching at the dressing, wanting baths – he just wanted to be free. We discussed it at length and they agreed it was clinically safe enough for it to come out, so in early May, just over a year after it was put in, we finally took the trip back to King’s to get it out. Life without his Hickman has been absolutely bloody brilliant – I never knew how much I would appreciate regular pj’s, and not having to put him in a blasted vest every day! He loves his baths and the paddling pool, although we still haven’t been swimming yet. More than anything, he just likes being nuddy, especially on the rare occasions that the sun gets its hat on and he deems it too warm for clothes! Unfortunately, it also means stabby bloods at hospital again, and the first set we had at QEQM a fortnight ago were really traumatic. And even more unfortunately, one of his liver functions was a bit high (still in range, but above his normal), so King’s have asked for a repeat this week; because his immunosuppression is currently at such a low level, he is at a greater risk of rejection and they have to make sure this isn’t an early sign of it. We then have his routine clinic at the start of July, so that means three sets of stabby bloods in a month, which is not what we’d hoped for. And of course, I’m worrying now that his body is starting to reject the liver, in which case he’ll need IV treatment that will be now be much nastier for him. I feel responsible for putting him through this nastiness, and even though both Ross and I stand by our decision – the improvement in his life makes it worth it overall – it doesn’t mean it’s easy to go back to it.
Playin’ silly waiting for his Hickman to come out at King’s
Loving his baths now 🙂
Having said all of that, I’ve also learned a very valuable lesson in the last few months. To pick my battles. So even though I may worry about that stuff, sometimes on a daily basis, I’m no longer letting myself get to the stage where I’m obsessing; I know that there may well be bigger, tougher battles that we’ll need to face at some point in the future, and I need to save my strength for them. And that in itself feels like a bit of a victory; I doubt any mum really gets away without any mum-guilt in their lives, but the trick is not to let it take over. I think I’ve become quite good at that in the last year, and I’m quite proud of myself for it.
The thing is, for all intents and purposes Hugo is a very happy, content little boy. I can sit there and worry about whether or not we are doing the best thing for him, or making the right choices, but he proves to me every day that we must be. He is learning, developing, laughing and growing into a headstrong, loving, clever little boy. And that (along with the odd glass of wine) is enough to keep me on the sane side of the fence – for now, anyway.
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.
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.
Day at the park with ViVi
Books. Just books.
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.
Still a swing junkie
Cuddles with daddy
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.
Playing hide and seek with his ball
Story time with grandma
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.
Last year was a bit of a write off. Yes, we were incredibly fortunate to be home for it, and we had a nice enough time, but the reality of Hugo’s diagnosis, his recovery, and what it meant for us was still sinking in. It certainly wasn’t how we envisaged our first Christmas with our boy. This year, however, we’re well and truly going for it. We’re (just about) getting a firm grip back on our world after that horrid blip that gave me a big wallop to the stomach in November. Our fridge is now stocked with wine (yum), cheese (yummer) and sprouts (yuk), and our Christmas jumpers are dusted off ready to be unleashed. We’ve taken a great amount of pleasure in spoiling Hugo rotten this year, with a mound of pressies wrapped and ready for him under the tree – which he is pretty obsessed with, by the way. He’s just fascinated by all the lights and the baubles. I took him to visit Father Christmas for the first time with my sister and his cousin; one of the ‘normal’ things we’ve now ticked off the list that I wasn’t sure I’d ever have the opportunity, or confidence, to do (and yes, Hugo and Violet are both officially on the Nice list – phew!) We’re also hosting Christmas dinner for the first time ever, so I’ve been practicing and perfecting my roasties for the fam, who all happen to be bloody good cooks. No pressure then!
Mesmerised by the lights at the grotto
Cosy, Hugo? 🙂
Looking back over this year, as we all tend to do at this time of year, it kind of goes without saying that it was beyond tough. It certainly wasn’t a year we thought we’d ever have to endure. But here’s the thing: we did endure it. 2015 tried to destroy us, but we fought – hard – and we won. So rather than feeling sad, or lost, or scared about what my family has been through in the last 12 months (and as I felt this time last year), looking back now I feel strong, proud and extremely, extremely lucky. And ready to move forwards into 2016 with my best foot forward.
It feels bizarre to say that we’re amongst the lucky ones, given all the trauma and stress we’ve lived through, but we are. Because Hugo made it. We faced the shitty hand he was dealt, and we got through it. Yes, we’ve had blips since his transplant – and we’ll probably continue to have blips into 2016 – but we’re finishing the year stronger and happier than we started it, and we’re together. At home. Healthy. And as cheesy as it may seem, that’s the best thing I could have ever wished for, because I know it’s not the case for so many out there; it was never a given. The meaning of Christmas has changed so much for us this year (as I’m sure it does when you become a parent, anyway). The festivities, family fun, presents, pigs in blankets and glasses of prosecco – they all have a place, absolutely. And I’m certainly looking forward to all of that. But I’m no longer taking it for granted; if those pieces of Christmas didn’t happen, and we still had Hugo at home, it would still be perfect.
Daily chaos. With Mariah on the TV, obvs.
Cutest Santa ever?!
As we’ve been building up to Christmas, I just feel so grateful that we are able to enjoy it at home with the boy, playing lots of Christmassy films and tunes, and watching him play, laugh and discover. I’m not going to lie; once or twice (ok, several times) I’ve found myself getting completely and utterly overwhelmed and shedding a few (happy) tears at the most seemingly insignificant situations – just sitting playing a game or reading a book with Hugo when one of my fave festive songs comes on, for instance. Goodness knows what I’ll do when Christmas day comes; waterproof mascara, I guess.
And then on top of all of that, Hugo is doing really well at the moment. He’s had a happy, fun-filled month, and we’ve both been able to relax and do a bit more for ourselves; taking that invaluable step back to be us rather than ‘just’ parents, from time to time. His bloods last week were perfect again (barring his EBV level which has crept up – but I’m trying to put that to one side until the repeat next week before freaking out again). His cognitive and physical development is incredible; the physiotherapists were blown away by him last week. He is learning new tricks at impressive speed, and is well on his way to standing up on his own – he is so determined. Actually the main things concerning us at the moment are ‘normal’ baby things. Like him not sleeping. As comforting as it is that these are our only current worries, we’d really like him to go back to sleeping soundly at night soon, please!
Slight happy faces…
My smart boys, out for lunch
It’s safe to say that all of that makes me feel pretty lucky.
So this year, while I’ll be most certainly be holding those who are forced to spend the day in hospital or without their loved ones in my thoughts, I’ll also be making the most of every sleep-deprived second at home with my boys and my family. Hopefully with the best roast potatoes ever.
Merry Christmas and Happy New Year, everyone! Wherever you are, whoever you spend it with, I hope it’s magical.
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 🙂
Family time in the New Forest
Yoga baby
Peek-a-boo!
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.
Boys at the beach
Boy on the move!
Laughs at home
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.
Our first day in hospital with Hugo, when he was two months old
Much needed daddy cuddles
And one year on! Our superstar
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.
My gorgeous family, a year on from diagnosis 🙂
I think all of that is well worth celebrating. Here’s to Hugo – my hero.
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 ❤
Happy birthday, my darling boy. Here’s to many, many more.
Life of a Liver Mum 