It’s been a few months since I first talked about starting this blog along with the Finn Henry Spain Instagram back in October, so here we go…
For those of you who haven’t ‘met’ Finn yet, he is a little legend!!
Baby Finn is 8 months old and was diagnosed with a rare condition called LUTO (lower urinary tract obstruction) when he was 20 weeks in my tummy – it’s where a small valve grew blocking his pee. Also known as a posterior urethral valve only in males apparently, which we didn’t realise at the time. We could visibly see his enlarged bladder on the scans. Our initial thoughts were, ‘ah that’s okay it’s only a big bladder, how bad can it be??’ Ha how naive were we!
The doctors believed the blockage had appeared to have fixed itself by the time it was found, but then to cut a long story short… the damage that had been done was so severe it had caused significant damage to his kidneys. Finn was born with tiny multi-cystic kidneys and now has chronic kidney disease / failure, currently just 5% kidney function.
Before Finn was born we were told that our baby had a 50/50% chance of survival and palliative care was very possible, which as you can imagine was absolutely crushing to hear. However, me being me had a complete breakdown for a couple of days and after a stern word with myself focussed on being positive all the way. And in the very first moments after Finny popped out he peed so we saw this as a good sign!!!
So far Finn has had 2 operations – day three operation no.1 was a vesicostomy, a hole in his abdomen where his pee has been rerouted to come out from (relieving any back pressure on his kidneys). And in October operation no.2 was to fit the feeding peg into his stomach as he doesn’t eat anything orally anymore. Update on operation no.3 to follow soon.
This blog is all about sharing our journey in a positive light! No matter how hard and horrible times might get.
Stay tuned friends 🙂