Days 275–380: the first liverversary and mummy wobbles

Two weeks ago, on 5th June, we celebrated the best milestone of this whole liver journey so far – Hugo’s first liver transplant birthday! I remember the disbelief I felt when we’d reached nine months post-transplant, so you can imagine the emotion that came with the first liverversary. I managed to hold it together for a little family party in the morning, but once we’d got back home it hit me and there were more than a few tears shed – happy ones, of course.

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What a difference a year makes!

It still sends shivers down my spine, to be honest with you; how Ross gave what remains to me to be the most heroic, loving and generous gift anyone can give in life – the gift of life – to our son, and how lucky we really are, in spite of the blips and bumps we are still experiencing, to all be here and living life together. That feeling of awe of what he did, and the joy of watching his unbreakable bond with Hugo, brings me happiness every day.

In the last three months, life has been hurtling past us. Mainly because Hugo is now hurtling past us; not only has our boy learnt to walk, he is now running around. All the time. Proud doesn’t even come close to the feeling we get when we watch him running around the park, bending down to smell flowers and chasing his ball around. It’s incredible. He has also, almost overnight, developed a total obsession for anything round or with wheels; now, rather than our flat being overrun with all things monkey, we are contending with trains, cars and tracks. He’s taken that momentous step from baby to toddler – you know, the one that makes you burst with pride while also suddenly and simultaneously realising, with a tinge of sadness, that your baby is growing up way too fast. And of course, part and parcel of toddlerdom is the tantrum, which Hugo is most certainly trying on for size now. He knows what he wants (normally Peppa Pig or chocolate), and if he doesn’t get it – especially when he shouts ‘TA’ at us (we can’t fault him for being polite at such a young age, although it makes it much harder for us to stick to our guns and enforce ‘no’) – he can activate Major Meltdown Mode at the drop of a hat. Although it is undoubtedly hard work, I’m also quietly a bit pleased that we have a son confident enough to be a bit headstrong, and – let’s be honest – that we’re experiencing the normal, shitty parts of parenthood as well.

The funny thing is, even though life in general has been getting better by the week, in the last few months I think I’ve actually suffered more mummy wobbles than I did during most of his first 18 months. Before Hugo’s diagnosis, I was a completely stereotypical new mum, obsessing about every decision and scared that I wasn’t doing right by him. Then, of course, everything got taken out of our hands and our focus shifted to just getting him through, getting him the treatment he needed to get him home again. In that time, I didn’t really have much of a chance to over-think our parenting methods or choices, and I kind of thought that once we were through the experience I would inherently have the confidence or perspective not to worry like that any more. Well, I was wrong – it turns out that even surviving the storm we have doesn’t give you any immunity to the fears that existed before; even though I can see how well he is doing, and despite the fact that I know there is a much bigger picture to consider with Hugo, I still find myself worrying that I’m failing him somehow.

Whether it’s his diet (my major obsession), his physical milestones or his speech, I seem to be able to find something to worry about on a regular basis. I know in the rational part of my brain that Hugo actually has a quite good and varied diet – he eats loads of fruit, a fair amount of veggies, home cooked curries and broccoli muffins – but I still feel guilty that we buy him Ella’s Kitchen meals, and feed him waffles and nuggets. I know I shouldn’t, but I take it personally that some other kids of his age will eat everything and he doesn’t; I was so determined when he was born that he wouldn’t be fussy, so the fact that he is a bit makes me feel like I’ve failed, even though I know it’s totally normal. With his physical development, I know deep down that there is nothing to worry about – the fact that he is literally running and climbing everywhere now given he didn’t even have a chance to roll until he was about ten months old speaks for itself. It’s amazing, really. But, rather than delete it, I still worry when I get a generic BabyCentre email telling me what a typical 20-month-old should be doing and see a long list of things that Hugo hasn’t done yet. And even though he shows great levels of understanding, I still find myself focusing on the fact that he doesn’t say more than ten words yet, or that he can’t string a basic sentence together, rather than focusing on what he can do verbally.

I know it’s ridiculous, but I can’t help it. Mummy wobbles don’t listen to logic. In fact, they actively ignore the rational part of the brain. It’s not that I’m not proud of him, because I am – immensely – and it also doesn’t matter that I know all of this stuff is very normal; I just don’t know whether I’m doing enough for him as his mum.

Luckily, I have a new positive force to reckon with – Hugo’s childminder, Emma. Putting him in childcare in the first place was a really nerve-wracking, but positive, step forward for all of us. The first time we went to meet her I mentioned these worries to her, and she set me straight there and then. She told me to focus on what he is doing, not on what he isn’t, because he will develop differently to every other child, liver disease or not. Straight away I knew that she was going to be a great influence on him and me. The fact that she is giving me reassurance from a new and independent place (she had no involvement in Hugo during his illness, and only knows him as the child he is now) has really helped my confidence, and thankfully Hugo absolutely loves going there – he literally can’t get out of my arms and into the playroom quick enough when I drop him off.

My latest guilt is about his Hickman line. The team at King’s weren’t overly keen on taking it out; they wanted it to stay in a bit longer, but we were reaching a stage where he was pulling at it, scratching at the dressing, wanting baths – he just wanted to be free. We discussed it at length and they agreed it was clinically safe enough for it to come out, so in early May, just over a year after it was put in, we finally took the trip back to King’s to get it out. Life without his Hickman has been absolutely bloody brilliant – I never knew how much I would appreciate regular pj’s, and not having to put him in a blasted vest every day! He loves his baths and the paddling pool, although we still haven’t been swimming yet. More than anything, he just likes being nuddy, especially on the rare occasions that the sun gets its hat on and he deems it too warm for clothes! Unfortunately, it also means stabby bloods at hospital again, and the first set we had at QEQM a fortnight ago were really traumatic. And even more unfortunately, one of his liver functions was a bit high (still in range, but above his normal), so King’s have asked for a repeat this week; because his immunosuppression is currently at such a low level, he is at a greater risk of rejection and they have to make sure this isn’t an early sign of it. We then have his routine clinic at the start of July, so that means three sets of stabby bloods in a month, which is not what we’d hoped for. And of course, I’m worrying now that his body is starting to reject the liver, in which case he’ll need IV treatment that will be now be much nastier for him. I feel responsible for putting him through this nastiness, and even though both Ross and I stand by our decision – the improvement in his life makes it worth it overall – it doesn’t mean it’s easy to go back to it.

Having said all of that, I’ve also learned a very valuable lesson in the last few months. To pick my battles. So even though I may worry about that stuff, sometimes on a daily basis, I’m no longer letting myself get to the stage where I’m obsessing; I know that there may well be bigger, tougher battles that we’ll need to face at some point in the future, and I need to save my strength for them. And that in itself feels like a bit of a victory; I doubt any mum really gets away without any mum-guilt in their lives, but the trick is not to let it take over. I think I’ve become quite good at that in the last year, and I’m quite proud of myself for it.

The thing is, for all intents and purposes Hugo is a very happy, content little boy. I can sit there and worry about whether or not we are doing the best thing for him, or making the right choices, but he proves to me every day that we must be. He is learning, developing, laughing and growing into a headstrong, loving, clever little boy. And that (along with the odd glass of wine) is enough to keep me on the sane side of the fence – for now, anyway.

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My boys at the beach on Father’s Day
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A tribute to Team Hugo

This is the first blog (for about four months, anyway) that isn’t going to be an update on Hugo, on how he’s doing. Partly because, really, there isn’t a huge amount to say at the moment (YAY). But mostly because this blog isn’t about Hugo, or us. It’s about the people that got us through the last few months, to where we are now; it’s about Team Hugo. During this journey, and where it has taken us so far, we have met some incredible people with equally incredible talents, and we’ve been touched by the overwhelming surge of support we’ve received at every corner. I’ve not really gone too much into this in my blogs so far, just because I really think that these people are so bloody special that they deserve more than a cursory nod here and there.

So here goes.

Anyone who knows me, or who has kept up to date with the blog so far, will know how pro-NHS I’ve always been, and how fiercely protective I am of it now. That’s because it is just purely and simply a bloody wonderful thing – I absolutely love it. It doesn’t even bear thinking about where we would be right now if it didn’t exist, or if we lived somewhere else in the world. We would either be financially destitute, or we wouldn’t have been able to get Hugo the treatment he needed. But we’re not in that situation, and that is 100% because of the NHS.

Aside from the specific people I’m about to mention, there were SO many people that were part of Hugo’s care at King’s. Doctors, consultants, the ward matron and housekeepers, anesthetists and the rest of the surgical team, Clinical Nurse Specialists, intensivists, dieticians, sonographers, radiologists, pathologists, occupational therapists, physiotherapists, social workers and psychologists… All do such varied roles, but each made such a huge difference to us – and they’ll continue to make a difference over Hugo’s childhood as he remains under their care. Each of them really does deserve their own tribute, but then I don’t think this post would ever end. So to all of these wonderful people, I just have to say thank you for being there; whether you were there on call in the middle of the night or as part of your routine day, you made a REAL difference, and one we will never forget.

It goes without saying, of course, that the nurses and doctors at QEQM are equally brilliant. They’ve also provided a lot of friendship and support, and shown great warmth when we’ve been on Rainbow. After being in and out like a yo-yo for the first part of the year, we then didn’t see them for over three months, and they still remembered all of us when we ended up back there. It makes our inevitable trips to hospitals less daunting, which I guess is the best we can hope for.

Nurses

It’s hard to know what to say about the nurses that we got to know at King’s. This is a team of people that work several 12 hour shifts a week, on top of their studies, courses and catch-up admin they have to do after their shift. They are dealing with very poorly children, some babies just days old, and anxious parents. Yet they do their job with such unassuming kindness, care and attention that it doesn’t really feel like they are working. For me, while I was living on Rays for nine weeks, it really felt like we were all in it together. They comforted me when I was upset, they got me tea when I was struggling, they babysat Hugo and sent me away to Ronald McDonalds for some catch up sleep when I was wandering around like a zombie. They let me have nights off with Ross to get some quality time together, and mocked us for leaving hospital to go and watch hospital dramas. They listened to my rants and ramblings, and always put up with my moods with understanding. They took the mickey out of my sleep talking. I got the girls opinions of some dodgy purchases (I accidentally ordered a very dodgy pair of hairy trainers – don’t ask). They really took the time to get to know me, Ross and Hugo; they became our friends. I still feel a bit bereft without them. They are just absolute angels, such unsung heroes, and I wholeheartedly love them all.

Melissa, Bethany, Emma and Niamh - just four of the beautiful Rays nurses
Melissa, Bethany, Emma and Niamh – just four of the beautiful Rays nurses

Transplant Coordinators

Seeing Justine and Gill (Hugo’s advocates) really became a highlight in the day when they were around. They just did so much for us over the weeks we were there. They helped to alleviate our fears, and answered our often confused and difficult questions. They always really fought for Hugo’s corner, making sure they asked the right people the right questions to get the preferred outcome. They always came for a chat and a play with Hugo before or after ward round. Both of them really helped to keep me grounded in being Hugo’s mum, and reminded me of that whenever things were starting to get the better of me. They made me laugh, often (Gill, in particular, when she pointed out my unfortunate builders bum to the passing ward round – consultants and all!), and they appreciated and encouraged my love of wine. They are just genuinely lovely, kind and funny women, and I really miss them both. I know they know just how much their friendship and support meant to all of us.

Hugo and Mickey loving the Gill and Justine cuddles
Hugo and Mickey loving the Gill (L) and Justine (R) cuddles

I had a little less contact with Fiona, Ross’s advocate, but she was equally as lovely. Hugo’s transplant wouldn’t have happened as it did without her, as she does the unenviable task of coordinating the living donor programme. I clearly remember our first conversation, where she told me that her interest was not with Hugo, but with the donor. I remember being a bit taken aback by this, but when we met and she went through it, I totally understood why she had to be so firm – she’s dealing with parents of very poorly children who, quite understandably, want (actually, need) their child to be top priority, so would often have high-running emotions (yes, even me – I know, you’d never believe it!) And she does an incredible job. They have to make sure that they’re not going to put someone’s life or health at risk unnecessarily by going through the living donor programme – yes, Hugo needed a liver, but if it would have caused harm to Ross, it would not have happened. Everything she did was to ensure that Hugo DID get his liver, and as soon as possible, but in the safest way to Ross. And then, on the day, she was there in her scrubs, in and out of the theatres, keeping me informed all day. And always with a kind smile on her face. She, like Justine and Gill, made everything so much more bearable, and we’ll always have so much to thank them all for.

Fiona and Ross at the pub
Fiona and Ross at the pub

Surgeons

I always thought that the surgeons would be among the more arrogant of the people we would encounter at hospital (I blame the TV for this impression) – surgeons have to be super confident to do their job, and get paid a fair whack to do it, so that would mean a big ego, right? No, wrong. We had two top surgeons in charge of Hugo’s transplant. Professor Nigel Heaton, who was on Ross’s side of things, and Hector (I don’t actually know his surname – that’s how informal it was) on Hugo’s. They’re both at the very top of their fields, which was reassuring as I had to put the lives of my son and my husband in their hands. What really struck me about them as I got to know them was their unassuming nature. Hector was so gentle, kind and friendly – he would always pop his head in or stop to talk to us when he was on the ward, asking after Hugo. I had many bear hugs with Hector, he was just so comforting. Prof was more reserved than Hector, less chatty, but never rude or obnoxious with it. I wanted to give him the biggest hug once the transplant was over, too, but opted for a handshake instead. I am just so incredibly in awe of what they do. At the end of the day, they saved my son’s life, and they safeguarded my husband’s. There will never be the words to express just how grateful I am that we had such wonderful, talented men doing everything in their powers to do that. It’s very humbling.

Ronald McDonald House

The Ronald McDonald house really was a haven for us while we were there. The house is just so full of warmth and a sense of compassion. Each and every time my mum, sister, Ross or I went there we were greeted with a friendly face and conversation. The facilities are just amazing; it really helped to feel like you had some semblance of a home life. There is a misconception, I’ve found, that they are funded by McDonald’s restaurants; this isn’t true. The charity boxes you’ll find at the tills go towards the charity, but they don’t get much other support from the chain. Nor are they government funded. They provided us with such wonderful – and tangible – support; there is no way that we could have afforded for anyone to be with me in London as much as they were without the house, and we are all so incredibly thankful for that.

The house that love built
Ronald McDonald – the house that love built

Work

One thing that has really struck both me and Ross during this is how incredibly lucky we are with our employers – Canterbury City Council and Holiday Extras. I’m still on maternity leave, so I’ve not had to take any time off so far, but Ross has obviously been working full time since Hugo’s diagnosis. And his work could not have been more supportive. They’ve enabled him to be there as much as he could be, encouraging him to take the time to be with me and Hugo, letting him put his family first without any worries or guilt. It sounds such a simple thing, but it’s not something that would automatically happen in this situation, and I am so grateful to them for allowing Ross to support me as much as he’s been able to. I went to see my work just before we ended up on our extended stay, as I was worried about what would happen when my maternity leave ended; I knew I wouldn’t be able to return to work when they were expecting me to, but I didn’t know what that would mean. I didn’t want to lose my job. And I haven’t. They’ve basically told me that my job will be waiting for me as soon as Hugo is well enough to go into childcare. I thought that would be the case – they work very hard at being a top employer – but it’s such a comfort to know that. We’ve got a tough few months ahead now my maternity pay has stopped (something that has been alleviated somewhat by our family), but at least I haven’t got to start again at the bottom of the pile somewhere I probably don’t want to work when the time comes.

Hugo loves a bit of HX :)
Hugo loves a bit of HX 🙂

The best mum and sister in the world

I’ll get onto the whole family in a minute. But I have to just say something about these two women. They are, without a doubt, the best friends I could have ever hoped for. They’ve been absolute towers of strength and support during all of this. Before we were in London, my mum would be here every day, doing my washing up, chores, shopping, just getting me through the day until Ross got home from work when I was struggling with it all. And then when we were in London she was there almost every week – often doing her crosswords, but there to keep me company and help in any way she could, big or small. Emily, my sister, has done so much to keep me sane during it all; making me take days or evenings out to be myself, talking to me late at night when she had work to do but knew I needed her, just always being there. They’ve somehow perfected the balance of letting me kick off or wallow when it was necessary, but also always calling me up on it when I was being unfair or unreasonable (something I know Ross will also be very grateful for!) I feel very, very luck to have had them there the whole time – they are the best mum and sister in the world, without a doubt.

Friends, family and relative strangers

We have had SO much support from friends and family, it’s been really overwhelming. The family have rallied round so much over the weeks and provided all sorts of support. They’ve driven back and forth from London to ferry either Ross, Hugo or all of us home over various discharges – sometimes at the drop of a hat. They looked after Ross when he came back from London first. They’ve provided shopping, dinners, and evenings off for the pair of us. Two of Ross’s sisters and his mum also set up a Go Fund Me page for us, to help us pay our bills in the period before I go back to work, which has given us such security and peace of mind to be able to focus on getting Hugo well, and not rushing him into nursery or childcare before his immune system is ready. They’ve given so much help, and we’re so grateful for it all.

Our friends have really kept us going. They’ve been so thoughtful and caring throughout everything, always taking the time to get in touch and ask how we all are, but what I really appreciate now that we’re home is the fact that they’re not pussyfooting around us. Many of our friends are also parents and they are, very rightly, not hiding or masking their own highs and lows for fear of upsetting us. We want to share in their joys and comfort them when it’s needed, too. Life goes on – something that is very easy to forget when you’re in the weird time bubble of hospital life – and it’s been so enjoyable coming home and slotting back into it. As much as our world totally revolves around Hugo, it’s also nice to be distracted from it and reminded about the wider world; that was something I really missed when we were up there, and something my friends have given back to me.

We’ve also developed a new and invaluable circle of support through all of this – the liver family. The mums and dads that we’ve met at King’s are the only people who REALLY get what we’ve been through with Hugo. Because they’ve been through it too. And even though they all have their own trials and tribulations to deal with, they still have the strength to offer advice and comfort (or a bottle of wine at the pub) when we really need it. They’re all incredibly inspirational and we feel like we’ve made some true friends during this journey, ones that we hope to keep for life. We’ve also had a lot of support from people we barely know, and some that we’ve never met. People who have commented on the blog, who have messaged me on Facebook, who have sent cards and presents to the hospital when we were there. Just random acts of kindness that are totally out of the blue and really lift our spirits.

A touching card and present sent to us at King's the night before Hugo's transplant
A touching card and present sent to us at King’s the night before Hugo’s transplant

It makes me feel very lucky, in amongst all the crap, to have such an incredible army of support behind us, that people are so invested in our baby boy. So to everyone reading this, whether you’ve been following Hugo’s journey so far or not, THANK YOU for being part of Team Hugo. We wouldn’t have got this far without any of you.

Days 14 – 24: follow your instincts!

I’m starting this blog with a couple of apologies, I’m afraid. I’m sorry (again) for the huge delay in between posts, but Hugo has been keeping me on my toes more than usual – if that were even possible! I’m also going to apologise in advance for this one. You will know that I’ve made a real effort to stay as positive as possible during this whole journey, in my blog and in real life. But the last ten days have been tough.

It actually started off really, really well. Hugo was discharged from King’s on day 14 – just two weeks after his op! When Natalie, our nurse, told me a couple of days before that this was the plan, I burst into (happy) tears on her. It was really surprising, as I was expecting to be there for a month PT; the average recovery time is about three weeks, and it can often be longer if they are very poorly beforehand, like Hugo was, and have severe ascites, like Hugo did. So to be told after two weeks that he was well enough to go was just staggering. I’ll be honest – I felt it was too soon, but if they really thought he was well enough then we were happy to take it!

When Friday came, I packed up the house and the bed space, hugged everyone in sight, gave lots of people wine and cake, and eventually made it off the ward with my sister in law and her other half to make the journey home. Being back home after nine weeks away was really surreal – I had become so used to living in a tiny bed space with no privacy and just a curtain for a wall, I forgot how big my flat really was! I cried as soon as Amy and Dan had left – I was just so relieved to be back.

My boys happy to be back together

For the most part, being at home was totally and utterly lush. We didn’t unlock the front door for the weekend (apart from to let in a bit of shopping – after two months of solidly eating crap I was craving something fresh and home cooked). We did very little apart from getting used to our new routine and getting on with some proper playing. And actually, Hugo’s meds weren’t too daunting at all – they’re far easier than they were pre-transplant, at any rate! Hugo looked a bit bemused by the jumparoo, but soon remembered how much fun it was. I caught up on Hollyoaks (yes, trashy I know, but I love it) and lazed on the sofa with Ross, a Bud and a box of maltesers (which, I realised, taste so much better out of a box than out of a bag! Anyone ever notice that?!) Hugo slept amazingly well in his own bed, and I slept amazingly well in mine. I had marmite on toast for the first time in two months – a little thing, yes, but a luxury to me. Ross was thrilled to have his boy home for his first ever Father’s day. I got back in the kitchen and cooked dinner for us and for Hugo for the first time in months. Unfortunately, Hugo’s become too accustomed to jarred foods now, which I’m really gutted about; I love cooking and had planned to cook all of Hugo’s food when it came to weaning, so I was really excited about making him something fresh and delicious. But no, he hated it. Cheers, son!

Tea in a proper mug, and marmite on toast. The breakfast of dreams.
Not totally sure about the jumparoo yet!

I say it was perfect for the most part. Ross was still really fragile by the time we got home (let’s not forget that he was only two weeks post-op, too), so wasn’t able to lend a hand getting stuck in with any of the chores. Obviously, that’s completely to be expected and I was totally fine with it, but I wasn’t quite prepared for the relentlessness of the tasks at hand – tending to Hugo (including meds, feeding, playing, changing stinkybums, bathing, settling overnight etc), unpacking, doing washing, cooking, clearing up, washing up… those who know us will know that Ross is a very, VERY hands-on husband. He does a huge amount around the house (yes, I’m very lucky!) So going from being in the hospital environment, with nurses buzzing around to lend a hand 24 hours a day, to being at home without that support was a bit of a shock to the system.

On Sunday, Hugo was a tad unsettled. We put it down to the change in routine and environment, but I started to keep a close eye. He was feeling a bit warm, so I started to check his temperatures. It was going a bit high, but not to worrying levels. In the evening he was happy and chirpy again, giving us lots of laughs during his bathtime and going to bed happy. But from about 10pm, he started crying, and he didn’t stop – all night. In the middle of the night, he was radiating heat, so I checked again, and he had spiked to 38.3. So on Monday morning (day 16), two days after getting Hugo home, I was packing the car back up and getting ready to head back over to QEQM.

Even though I knew there were going to be bumps in the road (it was only Sunday afternoon that I was on the phone to my sister saying how I was expecting it, that it was nothing to be frightened of, etc), I didn’t handle Monday well. At all. I was almost at the anxiety attack stage – crying, couldn’t breathe, couldn’t stand. To be honest, I hadn’t expected us to be heading back to hospital quite so quickly, even though I had felt that we had been discharged slightly too early. It didn’t help that I was totally sleep deprived. Or that I had decided to leave the washing up from Sunday. Or that I thought Hugo looked a tinge yellow again, that his belly looked a tad bigger, and his pee a teensy tiny bit too dark – something I think Ross and my mum didn’t quite agree with, but the gut feeling – the instinct – was there; Hugo wasn’t right, and I couldn’t shake it. I called my mum quite early to come and help (she is affectionately known as “pot wash” at both mine and my sister’s houses), so she got on with the leftover chores and allowed me to prepare, and by the time we left I had got myself together a bit.

Crazy-hair Hugo, not looking too fussed about being back at QEQM

We spent one night at QEQM, which is pretty much a blur. They were really good when we got there – took Hugo straight into a room so he wasn’t exposed to the other kids on the ward, did his vitals and his bloods early, and left us to wait. About six hours down the line – by which time one of the lovely nurses, Jess (who actually used to work on Rays), had ushered me off to the parents room round the corner to get some sleep; she could see how I wasn’t coping and even though she wasn’t looking after Hugo, she really stepped in to help – the doctor came back with some results and started Hugo on IV antibiotics. The worry was that he had an infection, and his bile-related liver markers (bilirubin and Gamma GT) had both increased; his bili had riseen from 19 (normal levels) to 68. So I wasn’t going crazy when I thought he was yellower! The plan was 48 hours of IV antibiotics and then hopefully, he’d be ok to go back home.

However. As always. This is, of course, Hugo. He doesn’t follow a plan. He actually responded really well to the antibiotics; he slept amazingly well on Monday night, and was much perkier on Tuesday. But, on Tuesday evening, his poo went white. Not just pale – WHITE. And not just one nappy – three. I lost it; I went from an almost anxiety attack on Monday morning to a full blown panic induced meltdown. The first thing that entered my head was that it was all happening again. We’ve spent the last six months pretty much just focused getting Hugo through, getting him to the point where he was able to start being well, and he wouldn’t have the fated pale poo anymore, and suddenly they were back. I think my heart actually stopped for a few seconds when I saw it. I’m sorry if that sounds melodramatic, but it’s the only way I can describe it. The thought of having to do it all again was heartbreaking. The worry about what it could mean, and not knowing whether his new liver was ok, was just crippling. The doctor phoned King’s straight away, and when he came in to say King’s wanted Hugo back, I was actually relieved. I knew he needed to be back there. The fact that they decided to transport him by ambulance in the middle of the night was perhaps a bit unnecessary. Amy brought Ross over to QEQM so that I wasn’t on my own all evening, and he brought some more things for me to take to London (again, I had two t-shirts, and this time Hugo had pooed all down one of them). I was just so happy to see him; he gives me such strength, even just by being with us. It was the little boost I needed.

We arrived back at King’s at about 4am on Wednesday morning (day 18), and it was pretty much straight back to business. I was still shattered, but I immediately felt more secure. My mum dropped her plans and came up, as she has done every week since we’ve been here. The woman is my rock. Even though I’m happier here than at QEQM, it’s still not been easy. Because they’ve been trying to diagnose what is behind the white poo, they’ve had to do various investigations on Hugo; biopsies, MRI scans, abdiominal taps, all of which require him to be nil by mouth for a minimum of six hours. And many of which have been cancelled at the last minute (biopsies), or failed (MRI). They thought it was a stricture, a swelling or blockage of the bile ducts; it’s not. They thought it could be a possible bile leak (which is serious, and would require more surgery); it’s not. They’ve not yet investigated rejection, which surprises me, although I have faith in their thought process. And although I have faith in them, I found it incredibly hard having to starve my baby boy for four days running. Today is a fifth day nil by mouth, as they thought he still needed a biopsy, but we’ve just been told it isn’t happening again.  I’ve tried to see their reasoning, but I’ve had a couple of breakdowns about it. And as much as they understand, they can’t put him at risk just to placate my instincts as his mum.

 

Happy Hugo at King’s
  

Daddy’s beard is a legitimate toy

Now, we’re on day 24. Ross is up in London with us (my mum took the train home on Friday afternoon so she could drive him up on Saturday. Seriously. She’s my rock), so I’m feeling stronger than I have been. We had a family dawdle out on Saturday (Ross can’t go any faster yet!) which lifted all of our spirits. The glass of prosecco certainly helped mine! Hugo seems to be doing well, despite still not knowing what happened; Hector (his surgeon) said we may well not know what caused this particular blip. That’s fine by me, if we get past it. From what they have been saying, it sounds like he was possibly brewing an infection, which caused an inflammation in his bile ducts and has now been dealt with by the antibiotics. That’s what I’m hoping, anyway. His colour and his belly both seem to have improved, his pee is nice and clear and his poo has been lovely and yellow/brown/orange for three days now. He has been chuckling away at the most random things – the blue curtain, Ross pretending to be Daddy Pig, a chair. It definitely feels like he’s better. And I feel better for it. But I know the doctors won’t let him back home again until they are confident that they have treated whatever it is, or that it has righted itself. So he’s been treated for infection with IV antibiotics for a week now – that’s one possible cause dealt with. I did ask why they couldn’t just treat for both infection and rejection; it’s because they are at opposite ends of the spectrum for treatment. Infection requires antibiotics. Rejection requires steroids, which suppresses the immune system. So if he did have an infection, and they gave the steroid, they could well make him sicker. They really have always got his back.

I think the hard thing this week has been being suddenly thrusted back into the unknown, the unexpected. To know that something was up with Hugo, but not what it was or what could be done. Going home was such a high, but the week that followed has been such a huge crash that I’ve not coped at all well. We were the closest we’ve been since April to having our lives back. Being home consists of so many little things – not living out of a suitcase, having space and toys for Hugo, being able to eat well and have proper tea again – together, they make a massive difference to daily life. Hugo also turns nine months old today, too, and I think that has had an effect on me. My maternity leave is essentially up, but I’m nowhere near able to go back to work. I’ve been reflecting on the maternity leave I’ve had, and I feel really sad about it. I’ve spent most of it in hospital with Hugo, which wasn’t part of the plan at all. We’ve not been able to do anything that we had dreamed of doing, and it feels really unfair. I’ve tried really hard not to let myself rue the situation and what we’ve missed out on, as it’s totally out of our control, but it’s hard to keep that up all the time. Hugo has given us a huge amount of joy during his nine months, yes, and we really do feel very lucky that he is our baby. But this last week I’ve also felt the grief for the life we have lost. I just want to get to the stage where we’re home for more time than we’re at hospital, able to enjoy our family life, and to just be happy again.

He really is mummy’s little tough guy

I know that, actually, we’re not in a different situation than we would have been had we not been discharged on day 14. I expected to still be here at this point in time. But it’s that blasted rollercoaster again. I had my home life within my grasp, and as much as we loved our weekend at home, it being so short lived was a blow. I’m relieved that I followed my gut again, though, and that they started treating him early. Instinct is a powerful thing, and I’m glad that’s one thing I don’t have to leave up here when we do eventually get out of King’s for Hugo’s homecoming #2… although this time, I’m definitely going to smuggle one of the nurses home with us as well. You just can’t be too careful, and I know my little flirty Bertie boy would love it!

The home-to-hospital yo-yo

After the recent disaster of going to London unprepared to stay, and more regular trips now on the cards, I thought it would be a good time to share my experience of being in and out of hospital, and give some tips for anyone in the same situation.

First and foremost, it’s the ultimate Boy Scout rule – always be prepared! Living in and out of hospital can be totally exhausting, so to be as ready as you can be is really important. I keep a bag packed to make the last minute calls in easier to manage; rather than running round like a blue-arsed fly when Hugo takes a turn for the worse, everything is there ready to go. Bit depressing that this is necessary, yes. But necessary it is.

I’ve now perfected my hospital bag. Here is what I’ve found most helpful in way of preparation:

  • Always, always, always have hand cream on you. It’s essential. You wash your hands more times than you’ll think possible, and without a good cream you may get what I call ‘hospital hands’ – dry, cracked and bleeding knuckles. My favourite is Nivea’s staple hand creme.
  • Keep a spare set of essential toiletries packed at all times – toothbrush and toothpaste, deodorant, face wipes and everything you need for a good shower. You don’t want to be rushing around trying to remember what you need as you will, inevitably, forget something.
  • Pack plenty of clean underwear! Socks, too. No explanation needed, really. You don’t want to be caught short here.
  • Always carry pjs. Whether you’re the type to wear pyjamas as standard at home, you will want to (and probably have to) wear them at hospital.
  • Take spare clothes. At the very least, some basic tops and a warm, cosy jumper. Again, pretty self-explanatory, but it took me a few trips to remember to keep some packed in a bag.
  • Something to alleviate the boredom. You will, inevitably, be waiting around for a long time when you visit hospital. Even with the best will in the world, treatments and procedures cannot always run to time, so you need to be ready to amuse yourself. If you are planning on taking devices (or anything of value), I’d check first there is somewhere secure for you to leave things. On Rays, most of the bed spaces (I believe) have a coin-operated locker. Don’t take anything valuable if you can’t lock it away!
  • Chargers, for your phone and any other devices you take. Particularly if they are with you to combat boredom! (And don’t do what I’ve done on several occasions and leave them behind. It becomes expensive, fast.)

I would also urge you to take whatever makes you feel yourself and able to face the day head-on. Being with your poorly baby in hospital can be incredibly difficult and upsetting. Some people are happy wandering around in their pjs, while others need to have their hair done and full face of slap on to feel ready to face the world. Just go with whatever you feel you need to do to make the best of being in that environment. Don’t worry about other people, or what they think. They don’t matter – your sanity does. I’m a bit middle-of-the-road here; I take my make-up and GHD’s with me so I can make myself feel and look a bit better, but I also tend to live in my pjs from the moment we’re admitted (and yes, that includes going to the shop or the canteen. I’m not fussed; I have nice pjs). There’s no right or wrong.

It’s harder to keep a bag ready and waiting for Hugo, as he uses everything on a daily basis – milk, dummies, meds (we’ve previously made the mistake of turning up at hospital without his meds, thinking they would provide them. They can, but it can take hours as they need new prescriptions. So always, always take the full set of meds. We don’t worry about the syringes though; they always provide them). We keep some spares packed (vests, baby grows, a blanket, nappies and wipes), but most of what we take has to be gathered up on the day. I would suggest that, even if you’re not expecting to stay overnight, be prepared to anyway. Especially if your child relies on a certain comforter to sleep – you don’t want to be without it! As annoying as it is to have to keep packing and unpacking, it is better to do that than the alternative of having to try and settle a crying baby (in my case, one who just wants Mickey Mouse’s bum on his head).

If you do end up staying in hospital for a few days, particularly if it’s a new hospital or a new ward, make sure you go out of your way to find out what the amenities provided are. We have stayed on the wards at both King’s (Rays of Sunshine) and QEQM (Rainbow), and our experiences were vastly different.

On our admission to Rays we were given a pretty decent overview of what was provided and where to find it. So we knew we had to provide our own breakfast; that tea and coffee was provided; where the extra blankets were. The only thing we didn’t know to start with was that there was a washing and drying facility on the ward.

On Rainbow, it was slightly different. We were shown where the tea and coffee was straight away, but that was it. Our first stay on the ward (in January) was for seven days, Friday to Friday. It wasn’t until the Thursday morning, after I’d had a bit of an emotional breakdown the previous day, that the nurse came in to see how we were and asked if we’d found everything ok. It transpired that the ward provides breakfast for parents; I’d gone for six days with just breakfast bars and tea for sustenance until my husband or mum arrived later in the morning to give me a chance to run to the canteen to buy something. And it was only on our latest stay (at the end of February) that we were told there is a parent’s room round the corner, with a fridge and facilities to provide your own meals. Considering we’ve stayed there for around three weeks in total, it was a bit annoying that we didn’t know this – we would have saved a lot of money and calories had we known and been able to avoid the canteen every day.

So, ask questions. If you’re in overnight, ask about breakfast, cooking facilities or whether there is a parents room (or even fridge). Don’t assume they will tell you; often, these wards are busy and it isn’t on their radar to tell you unless you ask.

It’s also worth establishing what provisions they have for baby’s food. Hugo is on special milk, so we have to take the formula with us when we’re at the local, but they provide disposable sterile bottles and teats so we don’t have to fuss with washing and sterilising his bottles as we do at home. At King’s, they provide both the bottles and the milk.

Finally, it is important to go to hospital with the expectation of waiting around fixed firmly in your mind. Timings change in hospitals. Emergencies happen. I must have made a dozen trips to Margate just for routine bloods, which can be done within ten minutes, only to be waiting for three or more hours for the doctor to get to us. It can be frustrating, but it’s the nature of hospitals. The staff at Rainbow now know we like being kept in the loop, so they tend to be pretty good at letting us know whether there are delays. You have to learn to be ok with it; it’s no good being anything else (and trust me, I’m not known for my patience. If I can do it, so can you).

So those are my top tips for surviving the home-to-hospital yo-yo. This is, of course, just from my experience, but having these preparations (both practical and mental) have really helped us deal with our trips.