Tuesday, 17 May 2016

A Martha Grace update: May 2016

Last Thursday was probably the most nervous I've ever been before an Outpatients Appointment; the whole train journey to London reminded me of the first time we ever went while I was still 22 weeks pregnant. It was a similar gorgeous sunny day and I had a horrible feeling in the pit of my stomach.

I had decided on a best and worst case scenario, had discussed with Mark that as long as the results fell somewhere in between those options then we could cope and it wouldn't be the end of the world.

You can most definitely tell that Martha Grace has grown used to ECHO's now; from when she was about 1 years old she would be hysterical and would make a grab for the probe/doppler and we'd all have to sing and play YouTube video's to try to distract her but the past few times she has been so brave and lay quietly on the bed. We had the loveliest technician who really interacted with her and let her hold on to the probe to suss it out before he started, he was really calming and as a result, the ECHO took much less time than usual because he could get clearer images.

As the ECHO images needed to be seen by a Cardiologist we took Martha to have her Pacemaker check and an ECG. The EP we met was just as lovely and chatty with Martha, she sat perfectly still while Mark held the device against her back. During Martha's last admission we were warned that Martha's battery had less than 11 months remaining, but they had a play about with her settings and amazingly seven months later she still has a minimum of 1 year longevity on her battery (maximum 2 years) Because the leads run through a fair bit of scar tissue, the Pacemaker does have to use a lot more energy to make Martha's ventricle contract efficiently - which of course is why we aren't getting as much life out of her battery. 

Sunday, 15 May 2016

Siblings || May 2016

May Day Bank Holiday was a bit of a bust; we'd packed up a picnic and headed up for Llyn Geirionydd (a lake near Betws-Y-Coed) and I thought I'd get the loveliest photo's of the kids playing/paddling in the lake. But we missed the turning and ended up on a single track road with nowhere to turn around for miles. We ended up just parking the car and having our picnic in there. 

I got quite upset, it was our last full day off together as a family before Martha's appointment and I'd built up this idea of a perfect day out in my head. It's one of the things that frustrates Mark the most about me - that I try to plan everything down to the last detail that I get myself in such a state when things don't go according to my plan.

Tuesday, 3 May 2016

A letter to Martha Grace || May 2016

My Beautiful Baby Girl,
My mind is racing at a thousand thoughts per minute. We are now in May and the safety of knowing that we have until your next appointment to enjoy "normal" life is almost over. We are off to London next week. 

We've had countless days out and you've settled in at school, we shared a family Holiday to Center Parcs and we've just enjoyed being a family of 5 and I've loved every minute...even the tantrums and the cheek!

It was three years ago today that we went for our second opinion to Great Ormond Street and met with Dr Ian Sullivan for the first time. It's amazing because we've shared almost three years with you that at one point - we didn't think we'd be lucky enough to have.