A letter to Martha Grace || March 2017

To the bravest little Lady in the whole world,

On the day of my 30th Birthday, it was your half birthday and you turned three and a half years old. I have to keep pinching myself that you are almost four years old. Four years ago we didn't even know that you would be born ready to face as many battles as you've had to - and look at you now.

This month is going to be another tough one for us, especially you. Your pacemaker generator will be getting changed before the end of the month. It means another operation for you. It means another trip to London and it means that once again we have to put you through a procedure that we would do anything to go in your place.

I'm not worried about the operation itself, not because I'm complacent - I know there are still risks involved. But this time we won't be stopping your heart and you won't need to go on the Cardiopulmonary By-Pass. The incision will be on your left side just above your left kidney rather than a sternotomy and should be easier to protect.

What I am worried about it the pre-op ECHO that we'll have done in preparation. I'm worried that the obstruction to your left ventricular outflow tract would have returned. It's been a couple of months since we were last at Great Ormond Street Hospital for an outpatients appointment and so much can change in a couple of months. You've has never displayed any symptoms of how your heart is coping, you've always looked so well even when the Hospital tell us there is a real need to operate on you. 

Dr Sullivan was so happy with you in January, I just hope that everything will still be the same this time. I'd like a nice year for us all this year, which is why I'm glad you're having your pacemaker changed so early this year - hopefully, we'll have the rest of the year to enjoy "normal" family life. You've been asked to be a Flower Girl with Isabella at your Aunty Jemma's wedding so you have that to look forward to.

I'm sorry that you have to have another operation, I'm sorry that you're going to be in pain again - this isn't your fault. If I could swap places with you I would, I hate that you have to go through all of this just to survive. But we promised we'd give you every opportunity that was offered to us - this is another one. Without your pacemaker, you wouldn't be here. Hopefully, we can be in and out within a few days again, I know you will miss your Brother and Sister - your Mammi and Daddy will miss them too. But it's just a few days apart and it will all be worth it to get you "charged" again.

We love you more than you'll ever know, we are so proud of the little girl you have become - even if you are a nightmare with your temper at the moment.

Can't wait to get this month over and done with.

From Mammi xxxxx

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