A letter to Martha Grace || February 2016

My beautiful Girl, where do I start?
It's taken me days to pluck up the courage to write your monthly letter, I've set myself a very strict time limit in the hope that today I can just power through and not have any time to cry.

What we hoped would happen last Thursday is that your Heart was still coping well with recovering from Surgery and that we just need to come back in three months. You had done so well to come home from the hospital just 5 days after such a major operation, we knew it was all too good to be true. We thought the wound infections were our punishment - how wrong were we!?

Martha, it kills me to say that the muscle tissue that they removed back in October because it was obstructing your LVOT has grown back. We always knew it would, it's a common trait of patients with an Interrupted Aortic Arch - but no one thought it would grow back this quickly. Your Aortic Arch is also narrowing at the end of the patch they made wider in October.

Worryingly, Dr. Sullivan himself said that you are far more complicated than they thought when you were first born. Of course, you are though - when have you ever done anything by the book?

I was so cross on Thursday, you never seem to catch a break. Daddy was just heartbroken for you - I haven't seen him cry since the morning of your 1st ever operation, he's taken the news really hard this time.

Martha Grace, everything we've done and everything we've put you through - we've done it because there is no way we are giving up on you. We are taking it as a positive sign that if they suggest further Surgery, it's because it's what's best for you and because you are worth it. Because the benefits outweigh the risks.

You waltzed into the meeting with Dr. Sullivan and he said it was "very reassuring" to see you like that. When I asked if I needed to organise a care plan for you when you start Playschool - he said that we didn't need to restrict your physical activities. He's happy to wait for another 3-month appointment and to see how much more the tissue grows in the meantime, and reviewing the situation in May. I'm taking all of this as a positive sign and keep reminding myself that I should just enjoy these next few months because I can't do anything to change what's happening inside your tiny chest.

You were so well behaved for your ECHO and Pacemaker test, thankfully we have a minimum of a year left on your battery before we need to think about replacing your pacing box.

Baby Girl, I don't want this letter to be all doom and gloom. We have so much to look forward to this month, it's half term next week and we have a few day's out planned. After half term, you are starting at Ysgol Feithrin (Playschool) which I know you will love. Mammi however, will be a wreck at the thought that my little Baby Girl is fast becoming a big girl like her sister.

I've made it this far without crying, so I'm going to leave it here.

We love you so much, everyone in your family is so proud of you and the little naughty character you have become. Please - carry on being you!!!

Love from Mammi xx

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