Days 275–380: the first liverversary and mummy wobbles

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.

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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.

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.

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.

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.

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My boys at the beach on Father’s Day
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It’s Christmaaaas… etc

I’m SO BLOODY excited about Christmas this year.

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!

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.

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!

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.

Days 110 – 176: excuses and reflections

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

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

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

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

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

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

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

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

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My gorgeous family, a year on from diagnosis 🙂

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

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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

Days 94–109: milestones

Hugo turns one in a week!

It’s got my head in a bit of a spin. A year ago, I’d just started maternity leave. I was happily nesting, eating cake and fantasising about what life would be like when my little boy came to greet us, totally oblivious to what the year had in store. Now, looking back, it all feels very surreal; blurry, yet very vivid at the same time. Somehow, time managed to slow down while the year flew by, and now we’re here. We’re nearly 16 weeks post transplant, we’ve been at home and hospital free for nearly three months (the longest EVER – touch wood, of course), and we’re fast approaching his first birthday. I feel like I don’t quite know how we got here.

Cheeky monkeys
Cheeky monkeys

Even though I’m obviously really super mega excited about it, I also feel a tinge of sadness when I look back over his first year. When I think about everything he has had to go through and overcome to get to this point, I can’t help but feel that way; no parent should ever have to question whether their baby will make their first birthday, but as his liver disease progressed, we did. I also feel a bit sad that we can’t throw Hugo a huge party to celebrate. Yes, I know he’s not going to know anything about it, and that throwing a party isn’t something I’d necessarily have done if things had turned out differently for us, but it’s one of the ‘normal’ things that I’m actually a bit miffed that we can’t do this year.

I know I shouldn’t really focus on it. I should just feel happy. But it’s hard not to reflect a bit; it’s just who I am. And honestly, I am INCREDIBLY happy and VERY excited. I also know that actually, we’re very lucky that we’re at home for his birthday (TOUCH WOOD!), as that has never been a given. We’ve made some tentative, weather-dependent plans – a picnic in the park this weekend with friends and family, and a trip to the zoo on his birthday. There will be a monkey cake and balloons, of course. And I know that wherever we spend the day, even if it buckets down with rain (as it has so far this week, grr) and we have to cancel all of our plans, we’re going to have a lovely day, because Hugo will be in it. We can’t fail to have smiles on our faces with him around.

Other than my tendency over the last few weeks to think a bit too much about all of that, things have been really bloody good! We’ve had one full set of blood results back and are awaiting the latest EBV results, but everything – as far as we know – looks good. His LFT’s this week are still all normal, which is fab considering one of his immunosuppression meds was reduced to allow him to fight the EBV. And as for the EBV, it has come down from 2million copies/ml (which was up from 70,000 copies/ml) to 200,000 copies/ml, which they seemed to be happy with (although I don’t actually know what the level should be). They’re continuing with the fortnightly bloods for now, and keeping a close eye on it, as ever.

We’re hoping that he will be going down to monthly bloods very soon, because we’ve had a bit of news from King’s this week. We’ve been given a date for his Hickman line to come out! Obviously, we know from experience not to focus on the date itself, but the fact that it’s booked in is a real positive. It’s not for a couple of months, so we’ve got time to get his bloods stable and to the point that they’re definitely happy for it to go. We’ve found the Hickman line to be such a double-edged sword. On the one hand it has been such a massive relief to have it there, so we’ve not had to hold Hugo down for the doctors to prick him to take bloods or insert cannulas. But on the other hand it’s such a restriction – we can’t give Hugo a proper bath or let him roll around without a vest on, in case he pulls at it (which he tries to do) or gets it wet or dirty; it’s a direct line to his heart and a massive infection risk. So now we can look forward to relaxing around him a bit more, and letting him splash around in water again, but we’ve also got to start taking him to hospital to be pricked for bloods again. It also means another stay at King’s, another surgery and general anaesthetic for Hugo (he’s notched up more operations in his first year than me and Ross put together). Ultimately, though, it’s a really good thing; it’s the last piece of plastic leftover from Hugo being critically ill, the last telltale sign (other than his scar, of course), and it’s going!

Proud of my boy and how far he's come
Proud of my boy and how far he’s come

In other news, Hugo started his physio sessions this week. Aside from us being absolutely soaked from head to toe by a passing white van speeding through a puddle on our way in to the hospital (about which I’m still fuming), and Hugo refusing to roll, prop himself up, or generally move at all while we were there after being a bit freaked out by one of the toys they wanted him to play with, it was pretty good. They went through some exercises for us to incorporate into his playtime to help him start to bear his weight on his legs and develop his core strength, and we’re already seeing a real difference! He can now plant both his feet on the floor with straight legs (before they were always a bit weak and ‘froggy’), and he can hold himself up on in the crawling position all fours on his own. All the while smiling and chuckling away at how exciting it is. I know this is going to sound really stupid, but even though I know that the reason he’s not done any of this yet is because of how long he’s spent in hospital, when I see all the younger babies achieving these milestones months before Hugo it makes me feel a bit of a failure. But hearing from the pros that actually, it’s just a lack of opportunity for Hugo that’s prevented him from doing it so far, and seeing such immediate progress, has really helped to snap me out of that particular mindset. He’s getting more and more motivated to move, and now I actually need him to slow down a little bit as I’ve STILL not baby proofed the flat…

So life, in general, is pretty good right now. We’re carrying on towards our own version of normal. Ross is fully back in the swing of work life, and I’m starting to think about going back to work now too, which fills me with all sorts of excitement and dread. We’ve had days out, nights out, baby playdates and visits from friends. I’ve somehow managed to stick to the exercise, although the weekly pizza has somehow wormed its way back into my diet (little sneak). We’ve got a mini break to the New Forest with the fam to look forward to in a few weeks, thanks to my mum. And Hugo is being a little gem to be with; he’s so happy, so cute, so funny, so lively and so loving, it melts my heart. He’s just so much fun to be around (even when his play starts to get a bit vicious and I lose chunks of my hair in his fists), and he seems to be changing and doing something new every day.

Although he STILL won’t say mumma. He just laughs and says dadda when I try and coax it out of him. He’s a little monkey, but I wouldn’t change him for the world.

Days 48–58: back to reality

We are now just over eight weeks post transplant. That time has just flown by in such a whirlwind. We’re over the initial, really crucial first six weeks, and Hugo is doing so well (touch wood, fingers crossed etc. As always.) We’re not yet in a position to relax the rules though; following those is what has got him this far. It’s been over two weeks since Hugo’s last hospital admission, which is just incredible. I can’t remember the last time we’ve been this long in our own environment! Life in general continues to get better, more ‘normal’ (urgh), but that’s not to say we haven’t had our struggles.

The boys had their scheduled liver reviews at the start of the week (I don’t count this as a hospital admission). Hugo had the usual – bloods, ultrasound and examination. The ultrasound was vastly improved; the amount of fluid in the abdomen around the cut surface of the liver is now tiny, and the blood flows are even better than before. There were no concerns from the doctor, and we’ve still (seven days on) not had his blood results. I’m taking no news as good news on this one; something I hope doesn’t prove to be naivety on my part. We also had Hugo’s weigh in, and the little man has done amazingly well. He’s now just shy of 9kg, and is on the 43rd centile for his age. For a liver kid, that’s pretty awesome. We saw the dietician, and she was full of praise; she said that the work that we put into weaning Hugo before his transplant has really paid off, as he’s eating really, really well. It was a massive relief for both of us.

Ross’s review was straightforward. He had his blood tests and a chat with the surgeon, and was sent on his way. He’ll need one more appointment and an ultrasound within the next few weeks, but then it’s pretty much a case of “see you in a year”. His liver will be pretty much back to full size now. Looking back, it really feels like transplant day could have been yesterday, not two months ago, and the fact that his liver has regenerated already is mind blowing. Ross has done amazingly with his recovery. It’s not been easy; he started doing a bit too much too soon, so he got a bit of a telling off at hospital and was told to take a step back to get a bit more R&R in. I think he’s (understandably) got a bit of cabin fever from being at home so much; he’s not been at work, and been physically restricted by his recovery so not been able to get back to his social life quite yet. But he’s nearly there now. He’s been far more patient than I could have been!

At the moment I’m finding life quite surreal. I’ve ended up seeing the last few months from different perspectives, which has been a bit eye opening. I spent one lunchtime while Hugo was napping scrolling back through my photos, enjoying all the happy memories we’ve created since being home… And then I hit the pre-transplant photos. They really shocked me. That probably sounds weird – I was there the whole time, so I knew how ill Hugo was, what he looked like. But that’s the thing. I was there the WHOLE time. I witnessed the progressive deterioration and saw the change gradually, over a matter of days, weeks and months. Unlike others (including Ross) who weren’t there 24/7, and would see a big change in his colour or belly size when they came up to London, I didn’t experience that. I never really had that shock while he was poorly. So when I was scrolling back and saw just how massively distended his stomach was, and how yellow he was – particularly his eyes – I was in shock. I could finally understand why people would sometimes be visibly affected by seeing him. I’m glad that I didn’t see him that way when he was that poorly; I don’t think I’d have coped at all well if I had. It makes me even prouder of how far he has come.

What a contrast!
What a contrast!

Then, on Thursday, we caught up with a BBC documentary called Transplant Tales. It really hit me hard, actually. I didn’t expect it to; I mean, we’ve lived it after all. But seeing it from the outside in was very strange – the wait, the uncertainty, the fear, the nerves of being taken into surgery. It all resonated very deeply. They even had a cancelled living donation transplant due to illness! I’ve done a fair bit of campaigning, of raising awareness, of the organ donor register since we were thrown into this – something that has been really well received through the blog, with friends, family and strangers all signing up (thank you, everyone!) – and this programme just highlighted yet again how important it is. In the last year the amount of people on the waiting list was higher than ever, but the amount of suitable organs available had fallen. People are dying on the waiting list. It just doesn’t add up. I get that people will have their reasons for not being on it, but I’ve also heard people say that they don’t think their organs would be usable. My response to that is – let the NHS decide! Sign up, and give them the option. You never know what you have that might save someone’s life.

Anyway, it’s been a bit tough. I think I’ve had a bit of an adrenaline crash – the massive high of being home has slowly petered down to just being in normal life, and as amazingly wonderful that is, during the high I wasn’t really conscious of the massive adjustment period I was in. Adjusting to being back home, living with Ross again, getting used to Hugo’s new routines, being both back in control again but now also having to share the control and responsibilities with Ross – all of them have taken their toll a bit.

I’m also on a mission to try and lose the weight I gained in hospital, and have found weaning myself off the diet I had up there has been harder than I thought; in theory, I want to go back to healthy, home cooked food, but in reality all I want is chips, pizzas and burgers. The carb withdrawal hasn’t been great for my mood, and I probably (definitely) haven’t been very nice to live with, but nine days in now and I think I’ve passed that period of grumpy hunger. I’ve also started exercising at a place called Boost (run by a friend) with my sister. It’s bloody hard work (especially since it’s been about 18 months since I last bothered to get off the sofa for anything other than a snack), but so far it’s also been really enjoyable. I’m getting a kick out of knowing that I’m doing something positive to help myself. None of that takes away from the fact that diets pretty much suck though, and I do spend a fair amount of time each day (and night) dreaming about pizza.

I guess it’s just life taking it’s course again. For pretty much this whole year, I didn’t have my own life; I had only one focus and that was getting Hugo a new liver. Now that’s happened, and we’ve had a really good stretch of him being stable and well, life has cropped back up again. It’s unsettled me a bit.

Don’t get me wrong; I’m not unhappy. Yes, it has at times been harder than I thought. I’ve been stressed and not the best company. But I’m LOVING being home. We’ve had some blooming wonderful days together, and a few firsts for Hugo. He had his first go on a slide on a family day out in Canterbury (he LOVED it!), he rolled over properly, he nearly said his first word this morning (“dadda”. There goes my determination that his first word would be “mumma”. Or “liver”), he went in his big boy car seat, and he met his (now four month old) cousin for the first time (he couldn’t keep his eyes off him!) We’ve spent lovely, long, lazy days at home, and had meandering family days out; just enjoying being together with no restrictions. I’ve caught up with friends over a few beers (and been gifted one or two hungover lie-ins), and we’ve spent some lovely days in the sunshine with sisters, babies, grandparents. Hugo continues to giggle and gurgle, and smiles his way through his day. It just takes one look at him to remember that actually, everything will be ok.

Updates (days 1–13) and ground rules

Sorry for the delay between blog posts again. I know everyone has wanted an update. But I’m sure you‘ll all understand that my boys have been keeping me pretty busy… We’re now at day 13 post-transplant, and things (SO FAR!) seem to be ticking along in the right direction. Touch wood, fingers crossed, and all that.

Overall, Hugo is doing pretty blooming well. His bloods are generally within normal range now, with a few exceptions – and nothing the doctors are currently concerned about; they expect them to fluctuate a bit as things settle post-op. His ultrasounds haven’t highlighted any major issues. He’s now rid of all of the surgical plastic that adorned him for the first few days – arterial and neck lines, ventilators and breathing support, catheter and drain ALL GONE. And his jaundice is all but cleared (and his bilirubin is currently normal!!!) – his skin and eyes look amazing, even if I am scrutinising them somewhat for tinges of creaminess out of paranoia (and yes, my mum, Justine and Gill are all telling me off for doing this!), his wee is clear and his poo is dark! He’s still not drinking his bottle yet, but he’s tolerating the NG feeds and he’s doing incredibly well with his solids, and he’s gaining good weight – 100g in 4 days is pretty swift!

The important thing in amongst all of the ups and downs happening every day is that his liver is still working. His daddy’s liver is doing its job. His body is still dealing with what was, essentially, a major trauma, so it is natural for things to peak and trough as the days go on. They’re monitoring his bloods daily, keeping a close eye on liver and kidney function, immunity and immunosuppression. So far, it seems to be going quite smoothly. But this is Hugo, and he doesn’t like to do things the easy way. We’re all expecting a bit of turbulence. But one major comfort, to me, anyway, is that turbulence is expected, and isn’t by any means catastrophic. And because they’re keeping such a close eye, they’ll spot any potential problems at their very early stages. They’re on top of it.

The other thing I must mention is his mood. I’ve always been super proud of Hugo for maintaining such a sunny disposition throughout his life so far. And even though I was told to expect a difference in him post-transplant, I didn’t really think he could get much happier. Well, I was wrong. It turns out, he can be MUCH happier! On Wednesday evening (day 5), something suddenly clicked in him, and he just started kicking around, gurgling and smiling. It was almost as if he realised how bloody amazing he felt! And then on Saturday (day 8), he started laughing for the first time. Ever. A proper little belly-laugh – without a doubt the best sound I’ve heard in my entire life. It’s like he’s seeing everything again through new eyes – new, mesmerising white eyes – he never knew he was ill, so I guess he just didn’t know how well he could feel. It’s made me pretty giddy with happiness. The only thing missing from the picture right now is Ross, and home.

As far as Ross goes, he’s been back at home now getting some serious R&R in before Hugo and I eventually make it back. He’s got a long old road ahead of him – 3 months off work – but he’s doing amazingly well so far. He’s had his first check up since being discharged and the Prof is happy with everything. Luckily, he’s had his mum with him the majority of the time while he’s been at home and I’ve been up here, with other family members all pitching in with a food shop, taking dinner round or just giving him some company and a helping hand. It’s taken a massive weight off my mind, and even though I miss him to bits, it’s much better for him to be home than for me to keep trying to look after both of them up here so soon after they’ve both had major surgery.

As for home… well, I’ve deliberately not been asking the doctors about home yet. And although they’re starting to mention the H-word, I don’t want to get fixated on a possible date, only for it to move and then to feel deflated. So even though I’m dreaming of it – my sofa, my bed, my bathroom, my family and my friends – I’m making myself remain focused on getting Hugo home WELL. If that takes more time, then so be it.

We have, however, started to thing about home in terms of the reality of Hugo now being a post-transplant kid. He no longer has Biliary Atresia. However – and this is a BIG however – his transplant is not a cure, and even though it has made him better, in that he is no longer a chronically and critically ill baby, it is not the end of his liver journey. His challenges have not disappeared; rather, they have changed. So I wanted to explain a bit about what this means in real terms for Hugo, and lay out some ground rules for when we do get him home. I’m sorry if this dampens the mood of Hugo being well a bit. I don’t mean to put a downer on the party. But it’s necessary. Ross and I don’t want to take the fun out of us being home, or out of Hugo’s life, but the simple fact is we have fought long and hard to get him back to being well. And we want to blooming well keep it that way!

Everyone following Hugo’s journey will know that he needed this transplant to give him life. But, even though it’s given him life, it’s not the same life as most other children will lead. In order for Hugo to do well with his new liver, he will be on immunosuppression (tacrolimus and prednisolone) for life. This means that he will be much more vulnerable than most when it comes to colds, viruses and infections. Yes, over the years, Hugo will need to develop his own immune system. And to do that, he will need to be exposed to various germs. But right now, at the start of this new – and hopefully improved – chapter of his life, he does not need to be exposed to anything unnecessary. For Hugo, certain viruses can actually be quite severe, and infections can be very high risk. Something that may just be mild to you or me could hospitalise him – he won’t be able to fight things in the same way. He will also be at a greater risk to some cancers because of his medication; glandular fever (EBV), in particular, is a known risk to him developing post transplant lymphoma.

So while we want to have the most “normal” (hate that word) life possible for Hugo, I’m sure you can all understand we’re not willing to take any unnecessary risks when it comes to his health. Particularly with Ross in his line of work! So, until we specify otherwise, these are the rules:

  • If you have any symptoms of a cold or virus at all, however mild you may deem them to be – STAY AWAY!
  • If you have chicken pox – STAY AWAY! Chicken pox can be very harmful to Hugo, so we must be informed if you think he may have been exposed to it at any time.
  • If you have a cold sore – STAY AWAY! One of the major risks he is exposed to is the cold sore (herpes simplex) virus. It is very contagious and can attack the liver directly, particularly in the first year.
  • No kissing Hugo on the face. See all of the above.
  • Always, always, always wash your hands – thoroughly. It’s the best defence we have against anything, particularly infections. Whenever you are interacting with Hugo, you must must must wash your hands. Before any contact, before feeding, after nappy changes etc. So don’t be surprised if you want a cuddle and we ask you to do this first. Hopefully, in time, this will become a matter of course – we know it already is for our close family. And I apologise in advance for the horrid dry hands you’ll get if you are around Hugo a lot – these are now part of the territory.
  • Speaking of cuddles – please don’t be surprised if we don’t hand him round for cuddles, particularly when we’re in groups. If we don’t offer Hugo cuddles, there’s probably a reason – so please don’t ask.
  • Please do not expose Hugo to smoke. Actually, this has always been one of our rules. We will not take him anywhere smoke-affected, and ask for you not to bring it to him.

The coming months and years are going to be tricky, but as things go on they will get easier. As Hugo slowly gets stronger, and his bloods start to stabilise, we will be able to slowly relax the rules. After all, he does need to go to school and work eventually – we can’t keep him wrapped up in cotton wool forever! But this process will take time. We are asking our friends and family to be patient and back us in this process.

One thing we don’t want is for people to feel like we have to be avoided. We would much rather you make plans and have to cancel them than avoid making plans to see us altogether.

The other thing we’ve discussed is the immediate few days after coming home. Although I’ve desperately missed everyone back home, we haven’t lived together as a family for nine weeks now. When we do get back home, we will want – and need – some time to adjust to Hugo’s new routine, his new meds and his new challenge, as well as just simply enjoying having him home and watching him flourish and start to catch up with his milestones (he’s already starting to sit unaided now). Just spend some much-needed time together as a family. Husband, wife and son. And jumparoo, of course! So for the first few days, we will not be seeing anyone – that means ANYONE. We won’t even answer the door. Once we’re bored of each other’s company, we’ll start to arrange to see people.

I hope everyone can understand and support us while we are in the transition period of being back home. It’s going to be hard enough, when the time comes, to be away from the safety net of the ward. Ultimately, the single goal we have – and we feel you share – is for Hugo to have a long, healthy and happy life. The last thing we want is to be under pressure to do things with Hugo that we’re not yet comfortable with. Please, give us time. We will get there. And, to be honest – if you don’t get it, tough. This is one area in which we are not prepared to compromise. But I know that those who are close to us will really get it and support us. So thank you, in advance, for that.

Third time lucky!

On Friday 5th June 2015, exactly 14 weeks after we were told that he needed a transplant and after two failed attempts, it finally happened.

HUGO GOT A NEW LIVER!!!

Yayyyyyy!!

A quick warning before I start – there are pictures of the livers further down. Read on at your own risk!

Hugo’s been stable over the last fortnight – which is why I haven’t blogged in a while; there wasn’t a huge amount to say. He’s been a very active and playful boy, and needed very little clinical intervention from the doctors; we were pretty much just lodging on the ward for the last week. However, as we’d had this date in mind for transplant since the first cancellation in May, and given the difficulties we’d had getting him into surgery, the team has remained incredibly focussed on getting him ready for his op. Everyone was determined that this would be the date – Hugo needed it to be done – and so they really did do everything possible to make sure it happened, including keeping him in isolation when he had cleared the adeno (although I think this was as much to do with my nagging about it as anything else – anything to shut up the anxious mother!) Despite him being in the best possible condition as the week progressed, Ross and I were still very nervous that we would get stuck at the intubation stage again, and had several chats with the team about whether they would take Hugo down first; we were scared that we would have the same situation when they were halfway through Ross’s surgery, and that we might lose Ross’s liver as a result. But on Thursday we were told – firmly – that this was not the way they did things, and they weren’t going to change their protocol. They were totally confident – and, we realised that if they weren’t totally confident, they probably shouldn’t be taking him down in the first place. We had to trust them.

Ross and I took time out to spend a nice evening together on the Thursday – we went to a local pub for dinner, and then just chilled out together until Ross was admitted onto his ward for the night. I wasn’t expecting either of us to get any sleep, but somehow we both managed to get some. I got up with Hugo at about 5am, and Ross came up at 7am in his surgical gown to have some cuddles before he went down. Mainly with Hugo, of course, but I managed to steal some. My sister had come up the night before and stayed at Ron Macs, so when Fiona (Ross’s lovely coordinator) and the Blues (as she called them) came to get Ross just after 8am, I left her with Hugo and went down with him, and I stayed with him until they kicked me out so they could get him under. It was scary leaving him, knowing that the surgery was happening – they had the first one of my boys.

Hugo, despite being hungry from being nil by mouth, was in a pretty playful mood when I got back up to him, so the time from then passed quite quickly. Fiona turned up at our room at 10am – I thought it was his turn to go down. But she’d come to tell us there was a delay because of another emergency that had happened. As frustrating as it was, there wasn’t anything I could do. Emily (my sister) later said how surprised she was that I hadn’t flown off the handle. But I knew there wasn’t any point, and I didn’t want to make myself any more stressed than was necessary. And as it turned out, Fiona was back up half an hour later, this time with Justine (Hugo’s lovely coordinator) and the Blues in tow, coming to collect my boy.

Even though I’ve done the walk down to the theatre before, this time it felt different. I knew it was really happening. I was so scared, but I was also relieved, as I knew that meant that Ross’s surgery must have been going to plan. After I handed Hugo over, I couldn’t feel my legs. Shock kicked in; all this time, we’ve been trying to get to this point, and now it was happening. I still didn’t believe it until I heard (quite quickly) that Hugo had been safely intubated! But it was real. Now I just had the wait.

The time actually passed quicker than I thought it would as the day progressed. Emily arranged for her boyfriend to bring my niece Violet up for the day, and she provided the perfect distraction. She didn’t know what was going on, and although I was incredibly grateful to the support I had (as well as my sister and Chris, Ross’s mum came up with a friend, and we had a huge amount of support from our friends and family at home and at the hospital for which I am incredibly grateful – although unfortunately my mum had a cold so I couldn’t let her come, which was really tough), Violet just lightened the mood, running round the garden at Ron Macs, waving at planes and playing on the swings. It’s very likely I would have been sat in silence just watching my phone, worrying and obsessing over what was or wasn’t happening if it wasn’t for her.

At about midday, I heard that Ross’s liver was out, and they were going to start closing him up. The news was that his liver was PERFECT. Hugo’s extraction, however, was taking much longer than anticipated, as he had lots of adhesions to his bowel. In the end, they had to remove a sizeable chunk (about 7cm) of his bowel and reconstruct it – it must have been pretty severe. But they got the liver out, and Ross’s went in. The plumbing-in of the arteries, veins and roux loop (the new bile flow system formed in the Kasai back in December) then went smoother than expected. By the time I was able to see Ross was in intensive care, late afternoon, I was given the news that Hugo was about to be sewn up!!

When I got to Ross in intensive care, I found out that the epidural that was meant to be providing his pain relief after surgery hadn’t worked, so he woke up from the operation (bearing in mind this is major abdominal surgery) with absolutely no pain relief. It took them a while (far too long, in my view) to get him sorted and comfortable; he ended up on a morphine pump, which he definitely made the most of (FYI, morphine-drunk Ross is HILARIOUS). But given the trauma that he went through, and the fact he had no pain relief at all to start with, he did AMAZINGLY. When I told him that Hugo had his liver, and that he was well and he just smiled. You could see the relief on his face. I think he’d have taken any amount of pain to hear that news.

Back on the ward - the morphine-drunk hubby. No. 1 dad!
Back on the ward – the morphine-drunk hubby. No. 1 dad!

When I saw the surgeon, Hector, he talked me through the operation. After I’d given him a huge hug, of course. All in all, they were very happy with how it had gone. He said, again, how good Ross’s liver was – if they could have designed the perfect liver for Hugo, that would have been it. It just goes to show how things are meant to be – if he’d had the cadaveric liver a fortnight previous, they wouldn’t have been able to close him up. But they managed to close him with Ross’s – muscle and skin. He was also happy with how the ‘plumbing’ had gone – the blood seemed to be flowing well, and it had showed early signs of functioning. The liver was good.

Hugo’s liver, on the other hand, had been in a terrible state. It was, essentially, a dead organ. Black, green, bilious and rock hard. Like a piece of evil that was squatting inside my son. Hector told Ross that it’s up there with the worst he’s seen in a baby that age. How Hugo lasted as long as he did, and how he found the strength to be as alert, as active, and as happy as he was, just astounds me. I knew he was doing well, but to see the real, stark truth of what was happening inside him was a real punch to the stomach. I think it’s safe to say that he couldn’t have lasted much longer without his transplant – and this was really why we were kept in hospital. So they didn’t let him die. It was incredibly upsetting, yet at the same time it just made me even prouder of him (if that was even possible) that he just carried on regardless. I knew he was very, very poorly, but as strange as it sounds, I never really saw it in him, as he never acted poorly. He had a resolute will to live. I am so in awe of my baby boy.

Because of the adhesions, and the severity of the diseased liver, Hugo is at a higher risk of complications post-transplant. His bowel walls are thin and damaged, so he may suffer a perforation. And his portal vein is at risk of blockage as it is very narrow, caused by the portal hypertension (his body had formed shunts to deliver blood to the liver, after which the veins can become narrow and collapse). If he does suffer a perforation or blockage, he will require more surgery. Suffice to say, they are keeping a very, very close eye on these things. And even though I hate the thought of him going in again, I don’t feel as scared, as I know he doesn’t have that thing inside him any more. I feel like we can conquer his obstacles now.

I finally got a call from Fiona at 7.30pm to tell me that Hugo was closed and up in PICU. When I got that phone call, the relief finally flooded out of me. Whereas that morning, I’d felt full of lead when both of my boys were in, I suddenly felt the weight lift. It was done. They were both safely out of surgery, and in intensive care. After 98 days of waiting, it was finally done. Hugo had a new liver; he no longer has Biliary Atresia. Even though we know the next stage won’t be easy, we are finally on the other side of that hurdle; one where we can believe our little boy will get better and start to have the life he so truly deserves. We can finally start to look forward.

We’re now at the end of day 5 post-transplant, and they’re both doing well. I’m trying my best to split my time between the two of them; it’s not easy, as I want to look after both of them as much as I can. But the exhaustion is so worth it as I see them both get better. Ross is still fragile, and he’s getting tired very quickly. But his scar is looking great and he’s getting stronger by the day. He’s now getting out of bed and has made it up to see Hugo a couple of times, and they’re now talking about his date for discharge. Unfortunately, he’s getting totally crap care on his ward. It’s surprising, as King’s is such a good hospital, but his nurses genuinely don’t seem to care that he’s had major surgery; on day 2 they removed his cannulas and told him to take paracetamol tablets instead of having IV. I mean, really?! Thankfully, Fiona has been kicking butt for us, and they’ve been bending their strict visiting hours for me so I can get in and help him out a bit, but it’s added to the stress of it all unnecessarily.

And Hugo… well, at the moment (touch wood and everything), Hugo looks just incredible. He’s had some ups and downs already – all par for the course – which made the weekend quite difficult. But he’s overcoming the challenges, hour by hour and day by day, and taking the small steps that we need him to take. His colour is already so improved – his bilirubin (the part of the blood that turns him yellow) is now at about 60, so he looks much less jaundiced. It should be under 10, but it went up to about 450 at it’s highest. His belly looks amazing – his ascites has totally gone (you’d hope so after they took over a litre of fluid away from his belly on Friday!) But that’s not the important thing. The important thing is that the liver is currently working! The liver function tests are all returning to normal ranges, so far. The graft seems to be working. It’s VERY early days, of course. We’ve been told to expect a bout of rejection – it’s quite normal. And although he’s off the breathing support, out of PICU and back on Rays, he’s still at risk of a range of complications. He’s not yet feeding orally, but he’s tolerating milk well and everyone seems confident it won’t be long until that picks up. We’re not out of the woods yet. We’re taking each day as it comes. And so far, so good.

I still can’t find the words to describe how I feel about what Ross did on Friday. I choke up when I think about it. Lots of people have called him a hero – including me – but it doesn’t really do it justice. Neither does proud, even though I am – VERY proud. I’m actually totally in awe of him. Ross is my best friend, he is a wonderful husband and an amazing father. But he’s done something in the last week that has touched my heart in a new way. He saved my baby’s life. He kept saying that it’s what anyone would do in this situation – that may well be true, but he actually did it. He gave Hugo another chance. What do you say to the man who does that? Thank you, I guess!

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Day 5 – I have a HERO and his name is DADDY – my boys, my world, back together

Third time really was lucky for us.

The thing about Hugo

It’s a strange thing, having a poorly baby.

In the time immediately after Hugo’s diagnosis it was near impossible to see beyond his illness; it will, after all, be with him (and us) for life. Our conversations about him centered around his liver, his colour, his treatment and whether we think he needs a transplant, rather than ‘normal’ baby talk. It took a while for me to really start to see him as my baby boy again – that feels really strange to say, but it’s true. Because of course he’s still our baby. Yes, he has a chronic liver disease, but that’s only one part of him. And if it wasn’t for the (currently few) physical signs – the scar, the swollen belly, the jaundice, the medicine – you wouldn’t know he was poorly.

He doesn’t act poorly. He acts in exactly the same way he did before he started being poked and prodded by the doctors on a weekly basis. It’s amazing. If it were me going through what he is going through, I would probably (definitely) be feeling more than a bit sorry for myself, and would probably be a massive pain in the arse because of it.

Three in a bed. One of his recent stays in hospital.
Three in a bed. One of his recent stays in hospital.

But not Hugo. He’s got such an awesome little character coming through now, there are times where I genuinely forget that he’s so poorly, which is a blessing in itself. I’m sure every parent reading this will understand that feeling of bursting with love for your baby; you think you couldn’t possibly love them any more, but every day you do.

So I thought, before the blog progresses into more difficult, sometimes serious topics, I’d share with you what makes him into the funny, brave little boy he is.

He’s strong. He bounces back from the physical pain he goes through at an incredible rate. The day after his operation, he did a big sneeze. Ross and I froze, worried that he would have really hurt himself (I was in so much pain after my c-section I couldn’t even laugh. Sneezing would have been agony. But we don’t need to go into what a wimp I am…) But Hugo didn’t even flinch. He just carried on like nothing had happened. And even though he’s had so many blood tests we’ve lost count, he just takes them in his stride – at his last one, he didn’t make a sound. He let the doctor get what he needed, and he carried on playing. I admire him so much for that.

Despite all of the fluid on his belly, he is still loves a bit of tummy time. As insignificant as this may seem, it makes me very proud.

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Poor, abused Mickey…

He’s awesome at playing. He really loves monkeys – give him a monkey toy to play with and he’ll happily smoosh it into his face for hours at a time. But more than anything, he just likes to have toys on his head. We regularly wake up to find him sleeping soundly with his Mickey Mouse teddy lying somewhat inappropriately on his head; goodness knows what poor Mickey goes through each night to get there.

He loves The Simpsons. We think he probably feels an affinity for them and their yellow skin…

He sleeps. Seems simple, but it’s something that eludes many of my mummy friends. Sure, some nights we need to help him settle every hour, but those nights are becoming the exception rather than the rule. Most nights, he’ll stir, do a cough and a fart, and go back to sleep. He’s such a boy. It genuinely makes my day.

He is a little chatterbox. He used to talk to us by poking his tongue out, but he’s now found his voice, and boy does he use it! It is the most perfect sound I’ve ever heard – it makes me melt every day.

My smiley boy.
My smiley boy.

And last, but most definitely not least, he always greets us in the morning with a whopping big smile. On the days where I wake up feeling like I can’t do it, I can’t cope with what lies ahead, he gets me through it, and manages to put a smile on my face and a spring in my step.

That’s the thing about Hugo. Despite everything he has to go through, he remains a thoroughly happy little boy. For every tear I’ve shed, he gives me a thousand more smiles; for every time I’ve felt helpless, upset or angry about his illness, how it will affect all of our lives and just how bloody unfair it is, he makes me feel ten times happier that I get to be the one to share all of this with him. Yes, being the mum of a baby with a liver disease is difficult, and completely heartbreaking at times, but the thing is that even through that, he makes me feel so lucky. I’m just so unbelievably proud of him.

A brief history…

A little bit about me and my family. My name is Polly. I’m a little bit weird (in a good way), I’m obsessed with food, I love dancing, and I’m known to be a bit of a control freak. I’m married to a wonderful, football-crazy man, Ross, and we have a little boy, Hugo, and a slightly chubby cat, Ronnie. We live in a lovely seaside town in Kent and enjoy quite an easy-going, simple life. On the whole, we count ourselves pretty lucky and we’re very happy.

In general, the first few weeks of Hugo’s life were pretty run-of-the-mill. He drank milk. He cried. He slept. He pooed (a LOT). We were tired, overwhelmed and incredibly in love. We felt very grateful that not only had we created the most gorgeous baby boy we’d ever seen, but also that he was so easy.

Mum and bub time
Enjoying some mumma and bubba time, back when everything was so much easier

When Hugo was about seven weeks old, I noticed a change in his routine. In particular, his nappies changed. His poo went from the bright English mustard yellow we learnt about in antenatal class, to a very pale cream. I did the usual checking – Google, Baby Centre and Mumsnet – but didn’t come across anything that worried me in particular. But as most new mums do, I decided to check with the doctor. I fully expected to be laughed out of the surgery as a neurotic first-time mum; I even made plans to go to a local playgroup with a mummy friend later that morning.

How I wish that is what had happened.

Instead, we were referred from one hospital to another, eventually ending up at (what is now our local) Margate. Bloods were taken, scans were done. Doctors spoke around us, but nothing meant anything to us. We didn’t have the slightest idea about what bombshell was about to hit us.

When the consultant finally came along at 8pm that night, he… well, I can’t really remember what he said. I recall he mentioned the words “specialist liver unit”, “London”, “bile flow”, “liver disease”, “surgery”. Other than that, I only remember a whooshing sound, and the distinct sensation that I was falling. We were told that Hugo would be referred to King’s College Hospital in London, and that it was vital that we had an appointment that week. We didn’t know what would happen beyond that. All we knew is our world, our little bubble with our new, perfect little boy, had suddenly changed beyond all recognition.

What followed was nothing short of a whirlwind – something I can now see as a bit of a blessing, simply because we didn’t have the time to stand still and really think about what was happening and how our lives were changing. We went to London for an assessment and diagnosis; more bloods, more ultrasounds, and a biopsy later, it was confirmed he had Biliary Atresia. We were told to expect a call within a week to book him in for urgent surgery; we didn’t expect it the very next day. We rushed around to get prepared – it was like packing for the worst holiday we could imagine.

One brave boy (and one exhausted hubby) at King's
One brave little boy (and one exhausted hubby) at King’s

Just ten days after I first took Hugo to my GP with pooey nappy in tow, he was taken down to theatre at King’s for major surgery.

The shock really hit me for the first time when we saw Hugo in recovery. Our ten-week-old baby boy was lying in a bed surrounded by wires, machines beeping all around him. We both suddenly felt like we’d run a marathon – it physically hit us like a ton of bricks. But, almost immediately, we both also felt a massive rush of relief – the anticipation of how awful it would be was gone; we’d jumped the first hurdle, and we were on the road to making him better.

Happily, we had Hugo back home for his first Christmas. It wasn’t really what we had pictured, as he was on intensive medication for the first few weeks (nine separate medicines in total, to start with), and because of this he had a suppressed immune system. We had to avoid big crowds and illnesses – not an easy feat during the festive season. However, we maneuvered around the family as best we could while keeping him as wrapped up in cotton wool as we could.

Home for our first Christmas
Home for our first Christmas

For three weeks, Hugo steadily made excellent progress. His poo was always very dark, he was gaining weight well, and his jaundice faded away until even the whites of his eyes had lost their creamy-yellow hue. We had regular contact with the Clinical Nurse Specialist and Dietician at King’s, and they were all happy with our accounts of his progress.

We had been told about several side effects of both his illness and the operation that we needed to look out for. So when Hugo woke up one morning in mid January with a fever and looking yellow-ish again, my stomach sank through the floor. Cholangitis. I just knew it. We had just got to the stage where his immune system was back up and running, and we’d been getting excited about being able to take him out and about, to baby groups and just even to Tesco. Have a bit of normality. But we instead packed up and headed to our local hospital, where he was given seven days of IV antibiotics to try and kick the infection.

During his stay in hospital, his liver symptoms got worse again. His jaundice came back, and his poos lost all colour again. Then, shortly after he was discharged from QEQM, we had his first check up at King’s. It didn’t go well. It was heartbreaking. One of the really frustrating parts of this illness is that there is never a prognosis (we’ve tried REALLY hard to get the doctors to give us one. They simply can’t). The worsening of his symptoms could have been caused by the infection he had picked up, or it could be the first indication that, in spite of the early good signs, his liver was failing and that he could well need a transplant (statistically, only about 25-30% of Kasai operations are successful; the rest result in a transplant). We were basically told that the best news we could hope for, in the immediate future at least, was no bad news – all the while we weren’t being told he would need a transplant, we could be positive. Or, at least, hopeful.

Not one to do things by half (he must take after me…), Hugo has since had a bout of gastroenteritis, a couple of colds, and has increased ascites. We’ve been in and out of hospital every week since he first took a turn for the worse. He’s had several albumin infusions and countless blood tests – to the point where he’s nearly run out of accessible veins. His bilirubin level (the jaundice indicator) is currently higher than it’s ever been. But on the flip side, his poo is regaining its colour. So we are seeing steps forward in some respects, while feeling like we are doing nothing but move backwards in others.

For me and Ross, we’re still learning how to cope with everything that has happened, and might happen. Having to come to turns with the fact that we can’t protect him from this, that we can’t influence what is going to happen, has been really hard. It goes against every basic instinct you have as a parent. So having to totally relinquish control of our lives to his illness is difficult, to say the least. We’re developing coping mechanisms and learning not to read too much into his changing symptoms. I’ve realised that being too hopeful is detrimental to my own ability to cope; being perpetually disappointed by the fact that his jaundice hasn’t disappeared when I wake him every morning will just slowly send me mad. So we’re just trying to be the upbeat and normal parents that Hugo needs us to be – the same ones we were before the bottom fell out of our world. And we’re counting ourselves incredibly lucky that he isn’t suffering directly as a result of the liver disease; he’s not in any pain, and he’s still the smiling, happy, cheeky chappy he’s always been. We know it could be so much worse.

Our playful little man
Our playful little man

That’s enough to keep us going for the moment.