HUGE milestones today and why I needed to read our story before I wrote it

Today, Clara turned 18 months old. Can we just take a minute to celebrate that? She’s a year and a half on this earth and she is beyond THRIVING.

I started this blog the night before. The night before the operation that would tell us if Clara was “viable” – except I didn’t know that at the time. We got home from NICU around 11pm and I was due to express and go to bed and be up and out the door by 6am to go back to visit Clara for another 17 hours. But that night I felt the need to offload everything in my brain – clearly my brain knew it had to reset itself before the big news to come the next day. I knew I had to share our story. I had to ensure if just one other family googled to find out what would happen to a short gut baby and their family, they would feel the hope I couldn’t find. I searched Google high and low – it wasn’t there. I had to write the story I needed to read.

The next morning we were greeted with the news Clara would be operated on once more – and we needed to discuss palliative care, make choices for an “end of life” plan. No – you never ever should have to plan for that. Not accepting it. Thanks but no thanks. For the outcome of the operation was to set Clara’s fate – whatever they saw when they went in would determine what choices we may have – except it didn’t really, she did. She’s owned this world from the minute she arrived.

But back to today. Fast forward 18 months and Clara is no longer fed intravenously by the primary vein entering her heart, she’s no longer under surgical paediatric care, she’s no longer considered ‘life limited’. She lives at home, no longer in a Children’s Hospital, and she goes to childcare on the days I work.

Today, her gastro consultant told us he doesn’t need us back in clinic for a year. A YEAR!! A YEAR!! Clara will be TWO AND A HALF before she returns to Gastro Paeds Outpatients. I can’t even comprehend that – in my head it doesn’t feel long ago we’d see her consultant every morning and night to monitor her progress, or even weekly appointments.

But it gets better.

We were always told Clara’s biggest challenge would be oral aversion. Being fed intravenously meant she wouldn’t use her mouth to feed – and therefore taste and texture would be foreign to here. So from 4 months corrected age, she was weaned. Food has been fun ever since.

I’ve worked out she’s dairy, soya, lactose, and gluten intolerant – and her Gastro team now agree. We lead her on a low FODMAP diet, it works for her (we tweak it slightly as she can tolerate apples etc). She eats SO much, I bake for her SO much – because shop bought snacks are near on impossible and everything needs to be cooked fresh.

But it’s paid off. It’s beyond worth it. I’ll smile every time I pay £2.50 for 8 mini half slices of Gluten Free bread, or £4.50 for a pack of salmon that will last her two meals. Because food has helped Clara to thrive.

She was born on the 0.4 centile, battled through TPN feeds to eventually make it to the 25th centile, surprised us by reaching the 50th centile through oral feeds alone. And then today absolutely blew our minds when she weighed in on the 75th centile. WHAT!! And to think I was nervous she’d maybe fallen below the 50th again and they’d question me over how well she was doing. 75th centile!! This means that 75% of children Clara’s age weigh less than her – AND SHE’S SHORT GUT!!

In between her appointments and her blood test today, Clara was running around outside – going off on her own to find the outdoor toys and the slide, coming back in to the rocking horse. She was independent and having fun. Munching on a banana in between. It didn’t matter to her she was in a hospital environment. Life was- is – good.

When I started this blog I was looking for this. Evidence if the world came crashing in, everything could still be okay. I didn’t need Google to show me medical journals, I needed to know we could still experience life as a family.

And here it is.

3 thoughts on “HUGE milestones today and why I needed to read our story before I wrote it

  1. Thank you for your blog!! I was googling experiences of looking after a baby post colostomy reversal to find some tips and advice and came across your blog. I’ve since been reading your posts and it was emotional for me reading Clara’s story having just left Tom’s Ward myself after my daughter’s fourth operation.

    I wish I had read your blog before our whole journey as I think I would have found it so helpful but what an encouragement to read it now. It can sometimes be quite disheartening reading parents experiences online to the extent where I did wonder if I should even go through with her reversal as so many parents seem to have an awful time afterwards for various reasons. But a friend said to me, well the parents that are grateful they did it and everything turned out to be a success, don’t tend to be the ones who hang around asking for advice on Facebook groups. I realised that she had a point. People need to post more ‘it was tough but we did it and everything is okay’ stories to help parents going through it to keep positive. Hopefully I’ll be-able to do that one day if things continue to go well.

    So thank you again and also thank you for all of the fundraising you’ve done to help Tom’s Ward. I’ve certainly made good use of the recliner chairs over these past few months.


    1. Thanks for taking the time to comment Danni – I had been debating how valuable keeping the website up was now Clara has come home and is doing so well, but I remember thinking when I wrote it that I wish there’d been something I could have read at the time to educate me and keep me positive. There was either nothing, or stories that filled me with fear. You’ve inspired me to keep going and share more of our journey, so thank you.

      I really hope your daughter is doing well now she’s home – there’s no place like it. Clara’s reversal was one of the best decisions, in fact it was brought forward earlier than planned and to this day I’m glad it was.

      I’m also so glad the recliner chairs really helped you stay close to your daughter, they were rare when we were there, but invaluable to me especially post op.

      All the best x


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