Wednesday, 12 April 2017

Easter 2017


I've felt really anxious and unsettled this week. It took me a while to figure out a possible reason why, but I think it's down to the fact that we're almost at an important anniversary.

16th April will mark 4 years since my husband and I innocently walked into our local Hospital to see our unborn baby at our 20-week scan, to find out if we were having a boy or a girl and to confirm that everything was well and my pregnancy was progressing as it should.

16th April was the day our lives changed forever.

I still define our lives as before and after this date. We are totally different people now. I can't tell you what we worried about before we found out about Martha's Heart condition but they would probably seem trivial now.



I've been keeping up with Charlie Gard's court case this week, this might also be a contributing factor to my mood. We weren't happy with the treatment that the Cardiologist at Alder Hey was suggesting and reached out to my Brother's Cardiologist, who personally referred us to Dr. Sullivan who was happy to take over our unborn baby's care. With a plan which we hoped would give our baby a chance of a decent quality of life if she survived the surgery. The emphasis being on "if" because we knew from the onset that this type of surgery carried an extremely high mortality rate.

I can't imagine not having the choice back in 2013 to move Hospitals, to a team we believed were offering us a better treatment plan, a team who believed they could successfully operate on our tiny neonate and potentially save her life.

 In an attempt to distract myself, I've been tidying up around the house...sorting cupboards and organising them in the kitchen and bathroom, making plans to redecorate the lounge and trying to plan the garden for the summer. 

We've lived in this house for 4 years next month. It was the house we bought when we found out I was pregnant with Martha. At the time we moved in we didn't know if our baby would ever actually get to step inside the house we bought for her. We did some basic decorating to get the house habitable before the new baby "arrived" but being 5+ months pregnant with a baby we couldn't risk being born early and in our local hospital - there wasn't much I was physically allowed to do around the house. 

But I want to change things up, freshen it up and make it a lovely home for our family.



My Mam had booked the day off work today, we had planned on taking the kids on an Easter Egg Hunt at our local National Trust property. However, the clouds looked like they were threatening to rain this morning so we decided instead to take the kids to Piggery Pottery in Cwm-y-Glo. Osh chose to paint an Owl money box, Isabella wanted to paint a Cupcake money box and Martha wanted to paint a bunny.

We'd never been there before and I was totally impressed this morning. It was the perfect rainy day activity. Our three had a great time and I could see the other children there were clearly enjoying themselves. There were a few grown ups there taking the whole thing very seriously too. We've left our pots there with them to varnish and dry for us and we'll collect them sometime over the next few days.




For lunch, we headed to "Scoops" in Caernarfon, a little pancake house. We love pancakes so this was the perfect Easter Holiday treat. 




When we met Dr. Sullivan on Friday 3rd May 2013 we discussed Martha's Heart Condition in great detail. He warned us that he couldn't see her Thymus Gland which was a marker for Chromosome 22 deletion, he warned us that her Aortic Valve could become narrow and need repairing and that she might need a pacemaker one day.

I asked him that if she somehow survived all of the above, would she be left with a reasonable quality of life. He was hugely insulted and scoffed "well I'd like to think my Surgeons would give her that, yes!"

Watching her paint a bunny in all shades of pink, blue and glitter and then scoff down a Marshmallow and Hot Chocolate Pancake almost 4 years later...I'd say they've given her an excellent quality of life.

GM
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