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.

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One thought on “Days 94–109: milestones

  1. Well done u its so lovely to read your blogs with living away as wedo its the only way to keep right up to date with hugos progress and you and ross of course well done all of u u r doing so well and hugos progress is amazing lots of love to u all xxxx xxxxx auntie judy xxxx

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