Dear Martha Grace,
I am heartbroken (no pun intended) I prayed so hard before your check-up at Great Ormond Street at the beginning of March and I can't believe we didn't get the news we wanted.
It was an appointment that I'd been dreading since early February, you'd never gone 6 months without having an ECHO - ever, even before you were born the longest you went without an ECHO was 10 weeks. But Dr Christov delivered the devastating blow that your Sub-aortic stenosis is worsening and that realistically we are looking at listing you for theatre at some point in the next year.
My baby girl, I break down and cry each time I even think about bathing you and dressing you up in a surgical gown before Daddy carries you down to theatre. I can't even begin to think how it will be seeing you up in CICU when you back, with all the tubes and the wires and IV lines.
But I don't want to dwell on that, nothing is certain yet. But one thing is for sure - we're going to spend everychance we get making happy memories for you, Osh & Isabella. Mammi has started making little home movies for you which I'll play for you while you're recovering...I'm hoping that seeing videos of you having fun will encourage you to get better quicker, make you so desperate to get out of the hospital so you can enjoy days out as a family again.
But you've been doing so amazingly well at home, you've started using your push-along walker a lot more. You've been enjoying having Mammi cook home-made food for you. Oh and you've started calling your daddy by his first name - which he hates and refuses to answer you until you call him "Daddy". The other day you and Isabella broke my favourite MAC lipstick which was only 3 weeks old and if I'm being completely honest I think it was you who went in to my bag to get the lipstick - Isabella doesn't go in to my bag but you do.
It's Easter Holidays at the moment so we have a few lovely days out planned, the camera will be glued to my hand not wanting to miss a single moment of you having fun, happy - alive!
Anything and everything that we do, will be done because we love you and we are not giving up on you. I'm just sorry for the pain and discomfort you'll feel (but they'll give you morphine I promise)
Love you baby girl.