Little Clara has only gone and done it again. She’s defied the odds, surprised the professionals, and proved to us all what a fighting spirit she really does have.
She’s a survivor.
Just days before we were told to prepare for palliative care. We were offered an introduction to the Helen & Douglas House Hospice team to understand how we could make Clara’s last few days comfortable. We declined. We would cross that bridge if the time came. That was the best decision we made – keeping our faith in Clara kept her strength up. She knew we didn’t need to have that talk.
Yesterday’s operation went well. In fact, it went in line with the best case scenario. After everything that’s happened on Clara’s journey so far we very much welcome that option!
Clara has had another few centimetres of dead bowel removed that had previously attached to her stoma. What’s left is 30cm of healthy gut, plus another few centimetres that I’ll explain another time but isn’t being used at the moment. She has a small plastic pipe in her bowel now that is exposed outside on her tummy. This was the alternative to having a stoma which would have used up another valuable 2-3 cm of bowel – with Clara every cm of bowel left inside counts. Her stomach waste currently leaves her body via this tube into a longer plastic tube and into a bag. In 2-3 months time, if all goes well, they will operate again and join her bowel back up.
The surgery should have taken around two hours, plus an hour of transport time to the operating theatre and set up we were told. Five hours later we got the call that Clara was ready to be collected by the nurses. No words can accurately describe the feelings we experienced during those hours. The closest words I can think of are hope and desperation. The outcome of the surgery was literally life or death – it’s indescribable.
When the time came (finally!) to collect Clara, her nurse Ali asked if we’d like to walk to theatre with them. I jumped at the chance, waiting any longer in that chair for news was no longer possible. The walk from NICU to theatre is a long one – various corridors, a lift, and lots of doors. We got to the doors of the theatre corridor and we waited outside. I was unable to stand still. Pacing up and down, up and down, I clutched Clara’s pink blanket in one hand, my head in the other. The next thing I know, Dean barks “Acacia!” and spins me round to face the operating theatre corridor doors. There, behind the glass, was Clara’s nurse Ali shaking two thumb up in excitement with a huge smile on her face. At that moment I knew we’d be okay.
It’s a long road ahead. Clara will need a huge amount of medical support for years to come. There’ll be complications and other medical issues, but it’s now promising she’ll grow up to be a happy little girl. We know now, with her determination, Clara is destined for great things.
Clara and the Gutcracker 
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