To My Beautiful Amazing Girl,
It's been months and months since I've written you a letter, I have no excuses but I'm sorry for not keeping up with them.
It's been such an amazing year for us as a family, but mostly for you...and it's all down to you.
You recovered remarkably well from the Pacemaker Generator replacement surgery back in March, and because you had an ECHO and an ECG during your pre-op appointment it was decided that you wouldn't need to be seen again for 6 months.
I was quite reluctant to go that long without you being seen, but your Daddy talked me round and I learnt to trust my instincts and that the hospital was happy with your progress so I should embrace it and try to enjoy the summer without worrying.
The last two summers have been spent waiting for a call from the hospital with the date for your open heart surgery, but we didn't have that hanging over us this year. Me and your Daddy even took the risk of booking a week's holiday from work. It was amazing to have that much time off together as a family.
The highlight of the summer had to be when us girls were Bridesmaids for your Aunty Jemma and Uncle David. I prayed so hard during your operation last year that you'd make it through just so we could see you walk down the aisle in your Bridesmaid dress, and I'm so glad that you've been able to enjoy my wish for you.
Your first day at School was a day I was dreading. I had a horrible feeling in my stomach all morning, the same feeling that I have on the morning before you have an operation. The thing is, the only people that we've left you with for 6 or more hours is your Naini's and Taidi's...and the theatre staff at GOSH. I didn't know how I was going to cope trusting someone else to look after you.
I broke my heart crying watching you go in, you were such a good girl and were so happy to go in. It's a moment we didn't think we'd have with you, a milestone that at times had seemed unattainable. But there you were, a living and breathing miracle on her first day at school. We worried that you'd be so tired once you got home yet somehow you have not once needed a nap after school. I had visions of you falling asleep in the car or crashing out on the sofa once we got home but you have been your usual happy and chatty self.
We couldn't hide away from London too long, you had an appointment booked for October 9th. It was an appointment we were all so nervous for, which wasn't helped by the fact that we found out the amazing Dr Ian Sullivan had retired and you're now under the care of a new Cardiologist.
Dr Sullivan is the reason you are still here, all decisions regarding your care had gone through him. We felt safe with him and trusted him implicitly.
Dr Luke Starling is your new Consultant and he runs his clinic on a Monday afternoon. You were so well behaved all the way on your 3hr 20 minute train journey, we packed a picnic for you to eat on the way so that you wouldn't be hungry at the hospital.
You didn't make a single fuss, you've done it all so many times that you take it all in your stride. Mammi and Daddy have learnt to collect the sticky tabs from your ECG and you spend the rest of the afternoon pretending to be a nurse and performing an ECG on the three of us.
That appointment was one of the best ones we've ever had and if we hadn't have been in such a rush to catch the train to go home, I would have cried in the cafe. The Left Ventricular Outflow Tract Obstruction had not reoccurred, the velocity was measuring at 1.9 mps, it was 1.6mps after surgery last year (it was above 5mps before surgery) Your atriums and ventricles weren't dilated and you had excellent cardiac function. Your mitral and atrial valves were leaking a little bit, but not enough for us to be concerned at this stage.
We don't need to go back to London until April, and if things remain the same we'll keep you on 6 month appointments. If you didn't have a pacemaker they would be happy to let you go 9 months between appointments (I don't know how I'd feel about that though)
I want you to remember this year, a year where Mammi and Daddy didn't put you through major surgery. I want you to remember being a Bridesmaid and staring big school like a normal 4 year old little girl. That's all we've ever wanted for you. I hope you believe that what you've been through was worth it to give you the life that you have.
Thank you for being you, for being braver than I could.
Love from Mammi xxxxxx