Tuesday, 1 October 2013

Too good to be true


Daddy, Osh, Isabella & Martha














I think I'd imagined the worst for too long. I didn't allow myself the luxury of thinking that things might actually go to plan. I hadn't even bought the little girl any clothes or bottles because I was too afraid of them never being used by their rightful owner.

We were so focused on the birth and the operation we wouldn't dare look any further in to the future.

You can't blame us.

An "Interrupted Aortic Arch" affects 3 per million
Live Births. Somehow even with odds like that our baby girl managed to be one of the 3 in a million. We wouldn't have won the lottery with odds like that. The mortality rate for babies undergoing surgery to repair an Interrupted Aortic Aortic Arch is 5%, so for every 100 babies having that procedure - 5 of them will not survive. The surgeons Registrar warned us on the morning of the operation that this 5% mortality rate was quite high for Great Ormond Street who are used to 98-99% success rates.

The thing is, if we could have been one of the "3 per million" then we could also be one of the "5 out of a hundred".

But, Thankfully - this was not the case. We've now been home for over two weeks :-)

But something isn't sitting right with me and I can't quite explain it. It's as thought this all seems too good to be true. Like we're only borrowing Martha.

I think the main reason I feel like this is because she needs more surgery in a few months time (to close the VSD) and so I know she has to go back to GOSH, so we've only been allowed to bring her home for a short while before we have to take her back there.

Or maybe it's because I am not the one making her decisions for her, simple things like increasing her feeds I have to call the dietician to see if and how much I am allowed to give her. While I understand the importance of her feeds for her to gain weight and appreciate that we do have such a strong team of professionals involved in her care - it does make me feel a bit pushed out.

I think I just need to get a grip. Everyone to tell me to just look at the bigger picture rather than focusing on trivial things like this and they're absolutely right. Just wish I could stop feeling like this.

GM
x


My perfect babies