Days 589–770: close enough to perfect

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

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

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

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

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

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

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

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

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

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

IMG-20170605-WA0034
My handsome boys. My world.

Who needs perfect when you’ve got that?

 

Advertisements

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.

PhotoGrid_1464886872285
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.

DSC_1599
My boys at the beach on Father’s Day

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.

IMAG8554
My gorgeous family, a year on from diagnosis 🙂

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

f0caf95577f15dd48c385f03f6f80088

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 59 – 93: three months on and National Transplant Week

It’s hard to believe that Hugo’s transplant was three whole months ago. Where on earth has that time gone?! I realise that I’ve not written a blog, or given a Hugo update, for a while; we’ve had a pretty busy month, and thankfully it’s been without a single trip to hospital. August was officially full of home, fun and making memories. In fact, I think this is actually turning into our longest stretch at home with Hugo ever. Since he’s been born. TOUCHING WOOD!!

Before I get onto the Hugo update, I just wanted to do a bit more canvassing on behalf of the organ donation community. Tomorrow (Monday 7th September) is the start of National Transplant Week. The demand for organs is on the rise, due to a mixture of an aging population, alcohol and obesity. But there are fewer transplants happening; there are three people reportedly dying while waiting on the list every day. According to the British Liver Trust, 96% of us would take an organ if we needed one, but only 29% of the population is on the Organ Donor Register. It just doesn’t feel right; it DOESN’T ADD UP. Ross and I recently watched the BBC documentary, Transplant Tales, and we were shocked to discover that 40% of potential donor organs are refused by the family. This is one of the highest refusal rates in Europe. It’s not enough just to sign yourself up to the register; the NHS relies on your family’s consent to allow them to fulfil your wish. So this week, there is a call for everyone in the UK to discuss organ donation. Sign up to the register, but more than that, tell your loved ones what you would like to happen after you die. Talk about it. Actually, scrap that. Shout about it. Make it clear what your wishes are; one conversation could be the difference between you giving a desperately needed second chance to another family, or that opportunity being missed.

Of course, we didn’t end up needing a donor organ for Hugo. We were lucky enough that we could go down the living donor route. But this doesn’t detract from how we both feel about organ donation; we still lived on the torturous tenterhooks of the waiting list with Hugo for three months. He probably wouldn’t be here with us now, heading with great strides towards his first birthday, if he hadn’t had a transplant. His new liver has absolutely transformed him. We are living now, not just existing, not just waiting and watching.

This is a feeling that is only strengthened by the amazing and incredibly inspirational kids (and their families) we’ve met since we were thrown unexpectedly and unwillingly into the liver world nine months ago. Babies and children who suffer from an array of health problems, whose only chance of survival is to receive a life saving gift from a total stranger. Some of these kids have had their transplant; some are still waiting. We are lucky to be able to count these families as our friends, and watch with absolute joy and awe as they fight, thrive and survive against the odds. We go through their journeys with them, as they share in ours. If you ever needed another reason to sign up, then these kids are it.

We met all of these kids at some point during our various stays at King’s. All of them have had a new liver for different reasons. Eli had an liver disease that was so rare, they had to come up with a name for it – Notch 2 gene related liver disease; Tilly, Sam and Mali all had Biliary Atresia; Jess had pancreaticblastoma, a very rare form of cancer; and Harry had acute liver failure at 11 years old. They are all so strong, and such examples to all of us – all of the above pictures are post-transplant. They, along with anyone who has ever received a new organ, are the faces of National Transplant Week. They are why we need to turn the stats around. 29% of the population on the organ donor register?! It’s not enough.

So please, if there is one thing you do this week, it’s have that chat. And then tell the world. Get on Facebook, Twitter or Instagram, and use the hashtag #sayidonate and get people talking. Do it… Please.

As well as it being the start of Transplant Week, Monday also marks another milestone for us. After three months, Ross is declared ‘officially’ recovered and returns to work. He’s done incredibly well – for a man who can’t stand mess, and who happens to be married to a somewhat lazy woman, he must have been chomping at the bit to speed up his recovery at times. And aside from the few instances he’s been told off (both by me, and by King’s), he’s been very patient and let his recovery take priority. We’re both looking forward to him going back to work – it’s another step towards that thing we call ‘normal’, even though we don’t really know what that is anymore. It goes without saying that I’m incredibly proud of him.

As for Hugo… In general, he’s been really well. It’s not been totally smooth (when is it with Hugo?!), but nothing has happened that hasn’t been manageable. When his last bloods came in, the initial results were encouraging – liver function was normal, Tac levels were stable – so King’s told us his bloods would be going to monthly, a really positive step forward. But a few days later, we found out that his EBV DNA was raised. EBV is the virus that causes glandular fever. It is very common, and most people’s natural immune system is enough to keep the virus in check. But in immunosuppressed people, not only can it develop into glandular fever and result in that person being very poorly (and probably in hospital), but it can react with one of the meds and develop into PTLD – post-transplant lymphoproliferative disorder: cancer. King’s have reduced Hugo’s immunosuppressants to allow his body to fight the virus, and told us to watch out even more carefully (although I’m not sure that’s even possible) for signs of illness. This leaves him with a slightly increased risk of rejection, but this is something we’re going to have to get used to – the balance of risks being managed and decided by someone else. We have faith that the team at King’s know their stuff, and are always acting in his best interest. He’s had some repeat bloods now, and we’re just sitting tight for the EBV results. So fingers crossed, everyone!

As much as we feel like we’re settling into our groove now, when it comes to doing stuff with Hugo outside of my immediate comfort zone (that is, being at home, or out with Ross), I’m still struggling a bit. Yes, we’re having loads of fun, living life to the full and we’re making loads of lovely memories, but we’re still doing this within relatively tight boundaries at the moment. I want nothing more than to be able to completely relax and enjoy life as it is, to not worry about whether or not our plans might pose a threat to Hugo. I would LOVE to be a mum who could just take their baby to a social event or play group without a second thought, one who could happily hand her baby round groups of people without having to worry; not only is it good for him in developing his social skills, but he’s becoming such a heavy and wriggly lump now that it’s exhausting keeping hold of him! But I just can’t be that person… not yet, anyway.

Now that we’re starting to get back into (our own version of) normal life, we’re faced with the reality of what Hugo’s disease and treatment means for him, and for us. Although he’s no longer battling with end-stage liver disease, and he’s essentially healthy, he’s still not a ‘normal’ child. His liver disease has not been ‘cured’, it has been (and is still being) treated. On the face of it, he looks totally well, like any other child of his age, so I can understand that people think he’s totally ‘better’. But he’s at much more risk than he seems, and it can be hard to balance that knowledge with functioning in day-to-day life. I’m still too nervous to take Hugo anywhere crowded, so I either don’t take him, or I don’t go. We took him to a family wedding last week, and although the day was beautiful and it was amazing to be out with the family, I could also feel myself becoming increasingly anxious as the day went on; once he was at home being babysat for the evening, I finally felt able to relax. It still felt too soon. I’m slowly getting better at rationalising the risks and my need to be in control. I don’t feel myself physically tensing up when I sense a risk anymore – not as much, anyway – but I’m still a complete slave to antibac. The thing is, I know that as time goes on, he’s going to go off to nursery, to school, to work, and I’m not going to be able to protect him in the way that I can now. I’m just going to have to figure out a way to deal with that as and when the time comes, but for now I’ll keep doing what I can to protect him.

Anyway, Hugo’s really thriving in his own environment now. He’s a bit behind where he might have in his development been at this age, but I think that’s totally expected given how long he has spent in hospital beds during his short life so far. But he’s catching up incredibly well; at their recent visit, the local Occupational Therapist was surprised at how well he was doing, as his referral from King’s had suggested that he would need a lot of attention from them. He needs some physiotherapy; although he is rolling now, he needs some help in developing his leg strength to start crawling and standing. He is always trying to move about, so I’m sure once he’s shown how he’ll be off (that reminds me, I really need to baby proof the flat…) He’s taken to teething on my chin – something that’s becoming increasingly painful as his teeth get closer to coming through (any day now, we hope – he’s still 100% gummy bear at the moment!), but I love it all the same. He’s turned into a total chatterbox (dada, nana, bla bla, no and blowing raspberries are his favourites. Not mumma, of course), and he’s developed some incredibly cheeky characteristics. He knows when he’s being cheeky – he has a telling glint in his eye. It’s beautiful.

As the days go by Hugo is becoming more and more our baby, rather than our baby with a liver transplant. For so much of his short life, he has been defined by what he has been going through, and it feels as though we’ve finally turned a corner with this. Yes, it’s still a major part of him – it always will be, and we have absolutely no problem with that. But it’s just a part of him now, rather than being his all. He’s just gone from strength to strength over the last few weeks, even with a virus lurking in the background. I’m just so proud.

I love my famalam
I love my famalam

Days 37–47: new blood

I reckon some people won’t believe the U-turn we took after my last post. I almost feel a bit reluctant to write about the good side of life at the moment, in case I’m jinxing it. But then, I guess, if I were to follow that line of superstition I’d have driven myself so mad I’d have been sectioned by now.

We lasted about four hours after the last blog was posted before we were on our way back to QEQM with Hugo. Yes, I know. You can’t make this shit up. Thankfully, this time we had only short, if a bit too frequent, stays in hospital. And even more thankfully, something totally random allowed us to catch a brewing blip extra early.

On the Saturday, Hugo wasn’t quite himself – not quite so happy, a bit more lethargic, a bit whinier than usual. But it was a scorching hot day, so you could forgive him. And anyway, we’re all allowed an off day every so often. But we started to worry as every time we picked him up, he screamed in pain. We had Ross’s sister, Amy, over to spend some proper quality time with Hugo (and to have some bubbly with me), and as we were giving him his wash (normally his happiest and most excitable time of day), he was inconsolable. Crying to the point of exhaustion. We examined his underarms, and noticed that he was slightly red and swollen on his right side – the side where his Hickman line is. A quick phone call to Rays later, and we were on our way over to Rainbow.

in hospital
Back in hospital. Sigh.

Without wanting to sound all self-pitying about it (that’s not my style), I really did feel a bit fed up at that moment that every time I’ve tried to plan something for me, it doesn’t happen because we end up in hospital. Ross tells me that it will get better, that I will get my life back, but it can feel pretty bleak at times. I guess it’s all part of this journey, and I know that Ross is right, really (don’t tell him, though!) My mum told me to try and think longer term, essentially backing up what Ross had said; things WILL get easier, we WILL get our lives back. It’s just a case of WHEN. We’re still only just out of the eye of the storm, so we can’t expect it to happen just yet. And even though I know that, it can still be pretty deflating to keep losing my grip on having a life and to go back to hospital life.

We ended up only being at hospital for about 3 hours that night. Hugo perked up loads on the way over, and the redness and swelling had faded by the time we got there. Typical of Hugo, really. They gave him a thorough check over, x-rayed to check the line was in the right place, checked it was flushing and working properly, and took some routine bloods and line cultures (the immediate worry with anything unusual at the moment is a line infection). Everything seemed fine – his liver function tests had all come back ok, there was just the full blood count to come back, so we went back off home. The doctors said they would ring if anything was amiss.

And of course, at 8am the following morning, the phone rang. Hugo’s CRP (infection markers) was high. It should be below 10, but his was 116. They wanted him back ASAP for further bloods, observations and probably to start him on IV antibiotics, even though he had no signs of an infection – usually he has a temperature, but this time there was nothing. King’s wanted him started on antibiotics on Sunday after the CRP was even higher at 166, so we settled in to the room expecting to be there for a week. On the Monday, his CRP had come back down to 116, and the nurse told us that the antibiotics were just once a day, so we could actually take him home and have him treated there! He had a total of five days of antibiotics, and by the Thursday his CRP was down to 30 so King’s were happy that they had done their job. We had managed to nip it in the bud again, even though we didn’t suspect an infection when we took him to hospital; all the while these markers were raised, he still didn’t show any signs of infection – no temperatures, he wasn’t off his food (he even enjoyed his first hospital meal on the Monday, and we all know how rank they are), no cough, no cold. It was weird – where was the infection?!

Unfortunately, it turned out that the infection (we never discovered where it was, by the way) wasn’t the only thing we had to contend with last week. About two hours after we got Hugo home on the Monday, QEQM rang to say that his haemoglobin (HB) was really low, and that he needed an urgent overnight blood transfusion. Obviously, this was a really scary thing to be told. I took Hugo back over, and he had repeat bloods in the early evening. The sample eventually came back and it wasn’t as low as they had thought (it was 68 instead of 55; they want it about 70); the earlier bloods must have been contaminated, or diluted. They thought he would probably need a transfusion, but it wouldn’t happen overnight. So, again, I packed him off back home.

We eventually heard quite late on the Tuesday that King’s did want Hugo to have a transfusion the following day, as his HB had dropped to 66. By the time we’d been told this, the community nurse had been out to take more bloods, and shortly after speaking to QEQM they were back to take YET MORE bloods for the cross match. Now, I don’t know if it’s just me, but this seems totally stupid. Hugo had bloods taken on Saturday, Sunday, twice on Monday and twice on Tuesday. I mean, REALLY? No wonder his HB was dropping – they weren’t leaving him with anything!

Hugo had his blood transfusion on the Wednesday. It took about 3 hours, so we were there and back within a day. And he responded amazingly. His bilirubin had come back as normal on the Tuesday, which is excellent, but the community nurse thought he still looked a bit sallow, a bit pale. As soon as he’d been pumped full of fresh B+ blood he turned the most perfect, gorgeous colour. Pale pink, with rosy cheeks. We finally, for the first time in his life, know what colour our baby should be. We now have a benchmark for him. And not only did he look amazing, he became so much happier and full of energy. I know, I keep saying this is improving. But it really, really is.

Happily, the transfusion has boosted him so much that we haven’t needed to take him back in. So even though we’ve had a blip, since his discharge from King’s on July 1st, the time we’ve spent at home is currently outweighing the time spent in hospital. Hugo’s cheeky character is really starting to shine through now, and he’s doing new things all the time. He pulls funny faces at us. He is almost rolling, and is figuring out how to move to get what he wants. He dives upside down and chuckles with so much glee that I cry with laughter. He comes out on trips to town, for lunch or just a mooch, and is (almost) always as good as gold. He even let us both go out for Ross’s cousins 30th birthday; Ross’s dad and step-mum came to babysit, and instead of us ending up in hospital, we actually made it out. Ross had to take it very easy, of course, whereas I allowed myself to get a bit glammed up and let my hair down for the first time in months. It felt good… Ok I didn’t feel quite so good the next day! But I was buzzing from just getting out and seeing all the family, from having some normality, so it was worth the hangover.

After his transfusion, we saw a blood transfusion practitioner, and she spoke to us all about blood. The whole blood donation process is incredible – another amazing part of our NHS and what it does. There are so many things that you don’t even consider when you’re being treated by our medical system, that you take for granted. She told us that blood bags are measured into two sizes: neonatal, and adult. Nothing for paediatrics, nothing for those between three months and 18 years – not in our area, anyway. So although Hugo only needed 100ml of blood, his bag was the standard adult size of 300ml. The other 200ml has to go to waste. I very naively thought that the blood was stored in some kind of barrel, and they siphoned off what they needed. Donated blood also only lasts for 35 days. That feels like a really, really short period of time. It feels like there was potentially so much being wasted, which just makes the whole donation system even more valuable.

As soon as we got home from Hugo’s transfusion, we signed up to donate blood. I’ve never done it before as I’m rather squeamish – I hate even having blood tests. But I’ve kind of had to put all of that to one side while being in hospital with Hugo. And anyway, even if I didn’t feel a bit better about the actual process, the fact that Hugo has had so many blood products, and a few transfusions, it’s a no brainer to both Ross and me now. We then found out that there was a blood drive in Deal the following Monday, which happened to be our second wedding anniversary. We thought it was the ideal way to spend the day; to give a bit back to a system that has saved our boy countless times. Unfortunately, we weren’t able to get down there, but we’ve got the next date in our diaries and we’re both really excited about starting our donations.

If my blog can achieve anything, it’s to encourage people to buy into the amazing NHS that we have. To help raise awareness, to get people to sign up to the organ donor register, and to give blood. So many people being treated in our hospitals rely on the generosity of others, and sometimes it takes it being so close to home to really highlight the importance of it. Of course, I now wish I’d donated blood for the last twelve years. But I haven’t. And I’m not going to waste my energy regretting that. Rather, I’m going to do something – I’m going to give blood. I know Hugo would give a huge high five to anyone else doing the same.

Days 15–36: little things make all the difference

When your life is whipped out from beneath you, when you take your child to hospital for something relatively ‘simple’, expecting to take them home within a week only to be told that actually, you can’t, everything remains in a spin for quite some time. Living in hospital is a totally surreal existence, one that can only really be understood by those who have done it. I certainly became totally institutionalised up at King’s; barring two days at home and two days at QEQM we were there for 73 days, so I guess it isn’t really surprising.

Happily, we’re now back at home again. And Hugo has lasted an amazing ten days so far! Ok, we’ve spent two days at King’s in this time, but this was planned prior to his discharge. The team at King’s never figured out exactly what was behind his blip, despite all of the tests and scans. He seems to be over it, whatever it was. But because they didn’t diagnose, they couldn’t say for sure that it was dealt with, so they were nervous packing us back off home. Totally understandable. However, I had become rather desperate to get him out of there by then – he wasn’t receiving any treatment at that stage, only four-hourly obs by the nurses – so at ward round on Wednesday we pushed for discharge on the agreement that I would drive him up to London for day clinics whenever they wanted. And they agreed.

What a difference a month makes...
What a difference a month makes…

To start with, being back home was almost as surreal as living on the hospital ward. I had to find my feet again. It’s been a bit scary being away from the security blanket that the ward had become – and I’ll admit that I miss being there a little bit. Not in the sense that I want to go back; obviously, I don’t! But it became very familiar and I felt like I formed some real friendships up there (I’ve caught myself talking like some of the nurses, so I must have been around them for too long), so it’s strange not being around those faces and surroundings anymore. I’ve also been a bit nervous of getting too comfortable, just in case something else was to happen. But thankfully, things, so far, have been good. Really good.

There are so many things that I didn’t realise how much I had missed, how much I would appreciate when I got home. Little things that make all the difference. Such as…

  • Eating off a plate. Ok, that’s really boring. But it’s something I didn’t get in hospital – the canteen food came in polystyrene tubs and the ward only provided paper plates and plastic cutlery. Sure, I’d eat away from the hospital as much as possible, but even then you weren’t guaranteed a plate; burger on a board, anyone?! Chips in a mug?! NO. JUST NO. Put it on a plate, please.
  • Fresh, home cooked food. Mostly, anyway; I was pleased to see that the local pizza takeaway still had my number stored on their system. Having a fridge full of fresh food, and not having to label it ‘Hugo Wooding Bed 6’, is blooming lovely. I’m not even bothered with the washing up, something I NEVER used to do – it’s a symbol of normality to me, and I’m actually enjoying it… a little bit, anyway.
  • Being near my friends again. I’ve missed so much of their lives – growing babies, moving away, changing jobs; just life carrying on in general. It’s nice to finally feel like we’re back in the fold a bit. Everyone has been so excited for us to be back, but also really understanding of our restrictions at the moment, so we feel incredibly supported and very lucky. Which makes the whole transition a lot easier.
  • Living with my husband. Even though we spent as much time as we could together while we were at King’s, it felt a bit like we were back to dating – we’d spend a few hours together, maybe go for dinner, then we’d go and sleep in different places. It was a weird place to be in after seven years together, and it only really hit me how bloody awful it had been when I got back. Ross is still recovering, and is doing really well; his secret abs are healing (during his surgery, they discovered that his core muscles were actually really tight. Abs. They were a bit surprised, though, as no-one could see them…) and he’s getting stronger every day. Having some quality family time, on our own, and seeing my boys play together after everything they’ve been through is the best feeling in the world.
  • Having freedom. Having variety. Having my own transport. Not having to ask permission to take Hugo out for an hour. Being in charge again. Something that I definitely took for granted before, and something that I now appreciate more than anything. And we’ve certainly been making the most of it with slow walks and lazy days going where we want, when we want. Bliss.

Then, of course, there’s Hugo. Where do I start?! Well, first off, Hugo’s two day appointments at King’s were just that – DAY appointments. We’ve spent every night since being home in our own beds. His bloods are going in the right direction – his bilirubin is now nearly back to normal, his Gamma GT is now below 200, which is the best yet since transplant, although there’s still a way to go. His other key liver function tests are all within normal range, and his scan was fine. His colour is really good, his eyes are becoming beautifully clear, his poos are still nice and dark, and his pee clear. So far, so good.

Aside from Hugo’s clinical wellness, he has made one other major step forward since coming home. He drinks! Actually, he doesn’t just drink – he guzzles. We decided to try adding Nesquik to his milk last Wednesday, just to see whether it really was, as we suspected, the flavour that he didn’t like. And hey presto – just like that he started feeding, and he hasn’t looked back. He’s not even that bothered by taking his meds orally now. In fact, he’s doing so well that on Saturday, 116 days since we first started the NG feeding and 36 days post transplant, we took the tube out! This was a massive milestone for us – we didn’t think it would be out so soon. His feeding has been one of the biggest struggles we’ve had through all of this, and we’d have been happy if he was feeding and we could take the tube out by his first birthday in September, so for him to achieve it so soon is just incredible. And it’s made a huge difference to him, too.

Hugo has always been a happy boy. But his happiness has reached new levels, and losing the tube is a huge part of that. When he sees his bottle, instead of screaming and getting freaked out he goes crazy with excitement. Mealtimes have become so much more fun, as we don’t have to worry about him getting puree all over his tube tape; we can relax with him. He’s trying new flavours every day, and he’s even starting to eat some of the food I’ve made him. If he sees a Dairylea triangle, a yoghurt pot or a banana, he goes totally beserk. He HAS to have it fed to him NOW. He CAN’T wait, it HAS to be NOW. He’s a right little chunky bum, and it’s amazing. It feels like we really have our baby boy back now; he was always such a gannet in the first couple of months of his life, and we lost that part of him for a while. He has done us so, so proud.

Hugo is, in fact, so happy now that he won’t take naps. Even when he is clearly shattered, as soon as we put him into his bed he wakes up, ready to play. I genuinely think it’s because he now feels so well, he doesn’t want to lose any hours in the day to sleep. He has a jam-packed schedule of bouncing in his jumparoo, learning to roll (he’s really, really nearly there) on the play mat, sitting up, watching cartoons (normally Peppa Pig, which I absolutely love), flying, chatting, and laughing his head off to do. There’s just no more time for sleep.

I keep having to pinch myself to believe that this is our life at the moment; it seemed so far away at times, and every time it was nearly within my grasp it slipped away again. I know it may not last indefinitely; he’s going to face challenges as the days, weeks and months go on. But right now, this is what I imagined being a mum would be. He’s home, he’s happy and he’s thriving, and it makes the last few months so, so worth it.

My happy family :)
My happy family 🙂

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.

“I never liked roller coasters anyway…”

This week was turning out to be the best one we’ve had since we’ve been up at King’s. The sun’s been out, Hugo’s not only been a blast to be around but clinically, he’s been in the best condition since the Hickman line mishap, having appeared to have quickly kicked the adenovirus out of his system, and I had a trip home planned for some serious R&R (and a few bubbles, of course).

The week didn’t start brilliantly – it was Ross’s birthday on Monday, his first one as a daddy, and he didn’t get to see Hugo. Ross and I both stayed at Ron Mac’s on Sunday night, so I saw him briefly in the morning, but he had to leave really early to get to college – where, it turned out, there was a surprise mock exam awaiting him. We both felt a bit sad about how his birthday had turned out.

Hugo's first piece of art for his daddy's birthday. He's a clever one!
Hugo’s first piece of art for his daddy’s birthday. He’s a clever one!

Hugo, however, had other ideas. He kick-started our fifth week in hospital with some serious leaps forward in his mood and development. In spite of the discomfort he’s in from teething, his smiles have been bigger and better than ever this week. And they haven’t just been reserved for Ross, my mum or me. He’s charming the pants off of everyone who comes in to see him. He’s stepped his cheekiness up a notch, too, with lots of chatting and bubble blowing, learning to blow raspberries (although he’s still not quite there with the high fives – YET), and cuddling Mickey in the most inappropriate way. It’s so nice to have a lively, chirpy little man back in the room. It really gives me the strength to keep going and, more importantly, keep things as normal as they can be for Hugo up here.

It must help that we’ve been able to take him out almost every day. Obviously, if he requires anything clinical – albumin or antivirals, both of which take a few hours – we’re still confined to his room. But these requirements are becoming less frequent. So on the days where he is well enough, and the sun is shining, we’ve taken him out. Normally, we go for a wander around Ruskin Park to see the squirrels and ducks, and then head up Denmark Hill to get some supplies and to Café Pronto for lunch (I’d recommend it to anyone who comes to Camberwell and needs a decent lunch) before heading back to hospital. He is always so well behaved when we take him out – he must appreciate the change of scenery as much as we do. Having the freedom to do all of this is a real relief for all of us; it really puts a smile on all of our faces.

One of the major steps forward we’ve taken is with his feeding. Hugo’s still on the continuous milk feed, and we’ve been very cautious with increasing it for fear of him being sick, which is both counter-productive and unnecessarily distressing. So I’ve been really focusing on his solids. And on Wednesday we had the breakthrough we’ve been waiting for – we managed to give him three meals! He’s been happily eating breakfast for a couple of weeks now (and we’ve branched out from rice pudding too – he’s also wolfing down blueberry and pear baby brekkies and banana flavoured rice), but come lunch time or dinner time he would scream the place down when approached with anything. But something clicked on Wednesday. When I gave him his lunch of orchard chicken, followed by a chocolate biscuit and custard, his reaction was amazing. He was actually excited to be eating! I decided to try for a third meal, albeit a snackier one – a Laughing Cow soft cheese triangle, some yoghurt and a banana – and the same thing happened. In fact, I’d go as far as to say he LOVED it. Not only that, but as his arm fat dropped this week (his only true measurement at the moment) we decided we needed to be braver with his milk feeds and push them up to his target 30mls an hour. And he tolerated it. We’d finally cracked it and were able to get the calories he needs into him! I was so bloody proud of him, I treated the staff and other residents to a little dance up and down the ward!

This week was also my opportunity to get home for a couple of nights, recharge my batteries and let my hair down. I’d pretty much planned my time, filling Friday up with eating lots of imaginary chocolate with my niece Violet, seeing friends for some drinks and getting a bit of pampering in, too. Perfect, really (other than my boys being up in London and not at home with me, obviously). Ross came up from work on Wednesday, and on Thursday we had a brilliant family day – sun shining, ducks following us round the park (slightly scary!), lunch out. Hugo barely slept but was really happy nonetheless. We took him with us for an early dinner before I hopped in the car to drive home, and he was loving being in the pub playing with his toys. And then it happened.

We got The Call.

Actually, we got The Call seven times – our phones were on silent! Poor Gill (transplant coordinator) and Melissa (our lovely nurse for the day) had been desperately trying to catch us before I left for home. But we eventually picked up – a B+ liver was on its way to King’s, and Hugo might be the one to have it.

Hearing that news was like boarding the biggest and scariest roller coaster we’ve ever been on. Neither of us could finish dinner. We stopped Hugo’s feed and sped back to the ward. When we got back, we were told that the liver was definitely intended for Hugo, and that everyone was happy that Hugo was well enough to go through the operation; all that was left was for Hector, the surgeon, to eyeball the liver when it arrived at King’s and make sure he was happy with it.

Things from then became very surreal, and went by in such a blur that it didn’t really feel like it was happening to us; time went both quickly and in slow motion. We asked for Hugo to be given an examination and X-ray, as it didn’t seem like they were planning on doing one routinely – Hugo had only been checked over by Emer, the consultant, two hours prior, and she was happy with his condition. However, we were conscious that we’d already had one surgery cancelled because he had adenovirus, so we wanted him checked over. Another doctor came and gave him the once over, and he had his X-ray. Everything was fine. We had to pack up our room, as we’d be discharged from Rays when he was taken down. We met the anesthetist, and the surgeon came up to go through the risks and get our consent. We were told that, if it was going ahead, it would happen very quickly – and they weren’t wrong. Hector came up at about 9.40pm and said that the liver was beautiful, albeit a bit bigger than they wanted him to have, but because of his ascites they were completely happy to go ahead. And then about two minutes later, our room was full of nurses, anesthetists, and the on call transplant coordinator Matilda, and we were on our way down with Hugo. Whirlwind doesn’t do it justice. At this point, he’d had about three hours sleep since waking up at 6am that morning and yet, rather than being overtired and grizzly, he was still giving us the biggest smiles and blowing raspberries at the team.

Fitting in a cuddle with Mickey before going down to theatre. And yes, Mickey has a name badge on...
Fitting in a cuddle with Mickey before going down to theatre. And yes, Mickey has a name band on…

We took the call from Gill at 6.30pm, and at 10.10pm Hugo was officially in surgery.

After calling our parents and sisters to tell them, and putting our stuff in the store on the ward, we headed back to our room at Ron Mac’s to get our head around what was happening; the next time we’d see Hugo, he’d have had his liver! We’d told ourselves that until he was taken down, we wouldn’t believe it was happening. But it was happening. In a few hours, we’d be on the other side of the hurdle we’d been heading towards for three months – it was so exciting and nerve wracking at the same time. Matilda told us she would call after the first three hours, and then every couple of hours after that until he was out. The operation was expected to take anything from six to ten hours, so we’d see him in PICU the following morning. We were told to try and get some sleep – hah!

But. And I’ve said this before. There is ALWAYS a ‘but’ with Hugo. My phone rang at midnight, less than two hours in. It was Matilda. She told us not to worry, but asked for us to come to PICU to see Hector. Those of you who know me well, know I don’t run. But I learned how to run at that moment. I ran so fast that Ross couldn’t even keep up. We both knew in that moment that it hadn’t happened, but we didn’t know why, and the fear I felt in those ten minutes are the most gut wrenching I’ve ever felt in my life.

When we finally got there and saw Hector and the anesthetist, they explained to us that when they’d put Hugo under and ventilated him, his saturation (lung function) had dropped significantly. They found the bottom of his lungs were full of secretions, probably from the adeno, which had been compressed and hidden by the ascites restricting his lung capacity. When they had fully inflated his lungs, it came loose, and became a problem. They had decided that they couldn’t continue with the transplant.

As awful as it was to crash that hard, Hector explained that if they had gone ahead, the potential complications that Hugo may have suffered could well have been so severe, they may have killed him. We knew, even through the shock, that they had made the right call. These guys are the best in the world at what they do, and there is a reason for that; they make the right calls when the chips are down.

The next day in PICU
The next day in PICU

Hugo was kept sedated and on the ventilator overnight, and we spent the day in PICU with him on Friday. PICU is a weird place; I don’t think it can really be explained. Hugo coped with it characteristically well. They suctioned a lot of secretions from his lungs over the day, and at 2pm they took him off the ventilator. When we saw him after that, he was pretty much back to normal, kicking around and ravenously hungry. At 6pm, the nurses came from Rays to take us back to the ward – less than 24 hours after we got the call – and I decided I wanted to try and feed him a bottle, rather than just start the NG up. Bearing in mind that he hasn’t taken a bottle in weeks, he went to town on it! After the massive highs and lows of the day leading up to that, he gave me what I needed. He gave me a boost, he let me cuddle and feed him, and he gave us a glimmer of hope that when the time does come, we’ll be able to feed him orally and not need the tube. He’s back on the NG feed now, but still… It felt amazing.

It probably goes without saying that Ross and I have been left reeling a bit from this ride. I mean, how close can you actually get to it happening without it being taken away?! All of the doctors and nurses we saw on Friday were totally gutted for us and shell-shocked – many of them are so invested in his care and well being, and know him (and us) so well after five weeks here, that they really felt the blow. Everyone we’ve spoken to has said this hasn’t happened before – they’ve never had a child get as far as going into the theatre, only to be wheeled straight back out. Thankfully, they hadn’t started to split the liver when they found this problem, and the whole piece went to an adult in need of it. It wasn’t wasted. The family that had lost a loved one that day will still have the precious knowledge that a life has been saved. That has been a massive comfort to me.

The next big question in our minds is how to get Hugo over this before the next date for Ross to be the donor. It doesn’t even bear thinking about what would have happened had this not been discovered during his surgery – we would have lost Ross’s liver as an option. This is where we can believe that, although it was a rough ride, it happened for a reason. It happened so that we can do everything in our power to get Hugo’s lungs clear for the next date. We’ve been very explicit to the team in our concerns about this, and that even though we fully trust the judgment of the consultants and surgeons, we now need to trust that Hugo is ready for the surgery to happen. It’s not going to be easy.

Now, back on the ward, we’re not in a much different place than we would have been had this not happened at all. Obviously, we are totally gutted to have lost a high quality B+ liver. But we still have Ross as an option. Hugo is still feeling the effects of the anesthetic and tube a bit, so even though he’s still given us smiles today he’s also rather grizzly and much sleepier than normal. I didn’t get my break at home, but that can wait. We still have a date for the transplant to happen. And we know more about his condition than we would have done had this not happened.

Back on Rays and waking up smiley again
Back on Rays and waking up smiley again

My sister put it right when she said that if someone could try to devise a way to torture us, they couldn’t get much closer than this. We’ve felt more emotions in 24 hours than we thought possible – shock that a liver had actually come up, and fear about Hugo going in for surgery. We finally allowed ourselves to be excited about the prospect of getting Hugo on the road to recovery, to then have the rug pulled from underneath us again just two hours later. Ross’s head has been in a spin from being geared up to be the donor, to accepting it couldn’t be him, for it then to change again. We’ve had adrenaline, numbness, and total and utter exhaustion. And the whole thing has been so surreal that it could actually not have happened at all.

I think it’s fair to say that this particular roller coaster has been totally horrendous. As Ross said – “I never liked roller coasters anyway”; this is one we desperately want to stop.

Mainly shits, and not many giggles

Those of you who have regularly read my blog so far will know that I try and maintain a positive stance on everything happening to Hugo, and our family. I’ve made a conscious decision to try and find the silver linings in each situation because a) I don’t think anyone would want to read a depressing blog and b) moping gets you nowhere. So I try to keep upbeat, laugh at what I can and remind myself that it could be worse.

However, being optimistic isn’t always possible. This goes for whether you lead a relatively ‘normal’ (sorry, I hate that word) life, or whether you have something shit to face every day. Unfortunately, the last couple of weeks have fallen into this bracket. Mainly because Hugo has been poorly. Normal (sorry, again) poorly, not liver poorly. And he’s been thoroughly miserable with it, which is fair enough. But we’ve really been missing our cheeky, happy little man, and not having him around has made it much tougher to deal with the daily grind.

Our days revolve quite heavily around numbers at the moment, with blood levels and feeding targets to try and keep on top of. So it seems fitting to tell you about our last couple of weeks in numbers.

3 – The number of trips to hospital we had last week. Also the number of blood tests he had. This shouldn’t have been the way the week panned out, but his first test on Monday (purely routine) clotted. So I had to take him back in the next day. We managed a couple of days at home after that, but then on Good Friday he was being very poorly (from both ends. I’m sure you don’t need the details) so we had to take him to hospital for IV fluids and observations overnight and through the Saturday.

1.5 – The number of albumin infusions Hugo had. The 0.5 happened on Tuesday. King’s advised that he didn’t need albumin, but I ruled against them as his albumin level, at 29, was low, he has a history of requiring infusions (his running total is now 10.5), his belly was getting larger and more tense, and (most importantly) he had a very precious cannula in that I was determined would be used; I didn’t see the point in taking it out and repeating bloods two days later, by which time he would have definitely needed albumin, when he had a working cannula in. It just seemed like needless pricking of my baby boy. So, anyway, we went ahead and gave him albumin. But the cannula wasn’t as effective as we’d hoped, it stopped working halfway through; Hugo’s hand started to swell and he was screaming in pain – even our nurse commented it was very unusual for him to be so upset. So they took it out and he got half the infusion (and a LOT of cuddles). Still, better than nothing, I guess.

30 – My new age. Yes, I turned 30 on Saturday. Waking up on one of QEQM’s blue plastic pullout chair-beds with Hugo being poorly (he was sick on the stroke of midnight, and then sneezed his tube out at 7am. I kid you not) and without my hubby was not an ideal way to start the day. But it got better as the day went on. Ross arrived early with a McDonald’s breakfast and some wonderful gifts (and my first ever Mummy birthday card). My mum and sister came and cheered the room up with banners, party hats and a lovely yellow cake. Instead of a pub lunch at the Jackdaw in Denton (where we got married a couple of years ago), I had a bizarre hospital canteen lunch picked by my mum (a very questionable shepherd’s pie and chips – she’s still being teased about this). We even managed to coax some smiles out of Hugo; these have been very rare the last couple of weeks, so this was a real treat. The doctors decided mid-afternoon to make use of Hugo’s cannula and gave him albumin before discharging him, so my sister took me home and we managed to go out for one or two (or ten) birthday drinks in the evening.

Also, 30 is the target minimum albumin level. Hugo’s is regularly below this. King’s have now said that there’s not much point in chasing that number, as he’s never going to hold the albumin. It’s now more a case of monitoring the ascites and not letting it get too bad. Hurry up, transplant…

22 – The number of days Hugo has been on the list, so far. He’s now also on the priority list, although we’ve been told the list for a B+ liver at King’s is very short, so we don’t think this will make much difference. We’re still jumping out of our seats whenever the phone goes. Ross is totally determined to be the donor, while I’m wishing for a cadaveric liver to become available before it comes to that. Either way, we’re still waiting.

2 – The number of cakes I got for my birthday. This is only worth a mention because the nurses on the ward very sweetly managed to source and decorate a cake for me when they found out it was my birthday. Becoming part of the furniture there has its perks.

Also, the number of times we had poo on our carpet over Easter. Poo. On our carpet. Once was Hugo, who managed to explode some out of the side of his nappy when bouncing in his jumparoo. The first we knew was when we looked up from our lunches (while hungover, may I add) to see him happily stamping away in a puddle of poo. He managed to totally avoid the jumparoo itself though, which was a stroke of luck as I don’t know what he’d have done without it while we were washing the seat. The second was a friend’s baby, who wriggled off the changing mat mid-change and onto the floor. Thankfully, Ross is a little obsessive over cleaning, and we therefore always have a cupboard full of Vanish and bleach.

Unknown – The amount of prosecco I drank on Saturday night. I had originally planned to go out with Ross and some friends, and Ross’s mum was going to babysit. However, when we had to take him into hospital on the Friday I decided to cancel – I was in a total state after the stressful week we’d had, and I couldn’t think of anything worse than facing people. Even people that I know wouldn’t care if I was a crying wreck all night. I couldn’t tell how Hugo was going to be, and I didn’t want to feel pressured to go out on top of caring for him, so I cancelled. However, as he perked up on the Saturday, and the doctors were happy for him to be discharged after the albumin, I decided that there’d be no harm in having one or two drinks with my sister. We ended up meeting up with one of my school friends who Ross had arranged to come down from Norwich as a surprise, and another couple of friends. And I ended up having a brilliant night and getting totally shitfaced.

Hair officially let down for the night.
Hair officially let down for the night.

6 – Hugo’s age, in months. I won’t go too deeply into how it makes me feel, that he’s six months old (and I’m six months through maternity leave already!), and we’ve spent four of those months living in and out of hospital. Suffice to say, it doesn’t fill me with happiness. Don’t get me wrong. I love the bloody bones of him. He’s totally and utterly completed our lives, and I cherish every day with him more than I could ever put into words. But I so desperately want to be able to really enjoy being his mum, just for a bit, without the constant stress, anxiety and heartache that we’ve suffered with him. To obsess again about sleepless nights, vaccinations and whether he’s hitting his milestones would be such a privilege at the moment. Rather than albumin, bilirubin (which, incidentally, is currently about three times higher than it was before his Kasai in December, and is steadily climbing), hernias and medicines. To my mummy friends reading this – please don’t misconstrue that as me belittling the day to day challenges we all face as parents, or thinking that they are insignificant. I’m not, at all. I know being a parent can be incredibly difficult, whether your baby is well or not. I just wish, from time to time, almost ruefully, that they were my only worries.

5 – The number of NG tubes that poor Hugo has had since last Monday. The first one was a routine replacement, and that should have been it for a month. But for some reason, the tube that we’d been sent as our spare was really short. Not useable, in fact. So just a few minutes after that was put in, it was taken back out again and replaced with a longer one. Then, at 7am on my birthday, Hugo did the most almighty sneeze, and out popped the tube. He managed to pull the third replacement out on Tuesday night, and then sneeze the fourth one out the following morning. His fifth tube of the fortnight, so far (and MASSIVELY TOUCHING WOOD), is still firmly in place. It’s such a shame, as his mood when the tube is out is so different. It’s probably because, when he doesn’t have it in, we’re not forcing a huge volume of milk (800mls a day is the current target from King’s) into him that he doesn’t want (but absolutely needs). I can only guess it’s like when you’re nine months pregnant, and not feeling much like eating, but being forced to eat a giant roast dinner five times a day. It’s going to make you grouchy, uncomfortable, and a bit vomity. On a positive though, we’ve now started to put most of his meds down the tube, too. We know it might mean he has it for slightly longer, but the little guy just needs a bit of a break, and this is one way we can give that to him. He’s even started to let us feed him real, actual food now, without screaming. Which is pretty lovely, and very, very messy.

And finally…

1,989

The number of people who have looked at my blog (and a total of 3,634 views) at the last count. Am a bit amazed by this. Thank you!