Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Friday 24 August 2012

Another check-up




It has been lovely having Daddy back home again this week, and we have been making the most of the sunshine and enjoying trips to the park and Jessica enjoyed celebrating Daddy’s birthday with him yesterday and getting her first taste of birthday cake.


We also had our check-up in Oxford yesterday and Jessica is continuing to do well.  The echocardiogram was reassuring; her tricuspid valve is slightly leaky but we have been told that this is not unusual with the kind of circulation that Jessica has and the amount of captopril that she is on has been slightly increased to help with this.

We also saw Dr Wilson (who performed the in-utero surgery) again which was lovely.  Jessica is due to have another cardiac catheter investigation in October and our next check-up in Oxford will be towards the end of November.

Thursday 16 August 2012

Getting here, there and everywhere


Our little social butterfly has had quite a busy time over the last couple of weeks – another trip to the Olympics to watch the canoe sprint (which she didn’t seem to enjoy quite as much as the rowing), an open house afternoon with lots of friends from church popping in, a couple of funerals (not so good), a visit from Auntie Maxine and cousin Kieran, a few days staying with Nanny and catching up with various aunties, uncles and cousins, a trip to the park with Auntie Twinny and cousins Ebony and Erin and a picnic in the park where she got to see some farm animals for the first time.  She has also ‘helped’ Mummy and Daddy out at a couple of coffee mornings at church raising money for Friends of PICU and Little Hearts Matter.

 

Whilst she hasn’t yet worked out how to crawl, she is getting more and more mobile and is quite quick at rolling across the floor and working out how to get to where she wants to go.  She’s always been quite a wrigglebottom but now she’s constantly on the move and nappy changing and getting her dressed have become quite a challenge as a result!  She has also just started clapping her hands and it is delightful to watch her doing this whenever she gets excited over some new discovery or is pleased with herself over something.  She has also started giving us sloppy baby kisses, which is very sweet, although is very, very selective about when she bestows them and coaxing so far has had little effect!


 
She is continuing to grow and thrive – now weighing in at 7330g (16lb 2oz) – and is still breastfeeding well (with Infatrini top-ups) and enjoying her food at mealtimes, particularly when she has finger foods and can be Little Miss Independent!  The community nurse is now visiting fortnightly as Jessica’s oxygen saturations have been nice and stable (staying in the mid 80s) and we are due to have our next check-up at Oxford towards the end of next week.  We are also looking forward to having Daddy back home tomorrow as he has been working away in Germany this week.

Thursday 2 August 2012

A few firsts


 It’s been a week of firsts for Jessica – waving bye-bye for the first time, saying “Nan-Nan” for the first time, first bus and train journeys and first trip to an Olympic event (not to mention going to watch the torch as it came through Uxbridge).  She is such a happy and sociable baby and really seemed to enjoy her day out watching the rowing today although the rather loud cheering as Team GB won a silver medal frightened her a bit and she wasn’t quite so happy about that!  



Jessica now says three words  - “mum-mum”, “da-da” and “nan-nan” and is very confident now with sitting unsupported – so much so that she doesn’t want to lie down on her mat anymore and prefers to sit and play with her toys instead – particularly those that are musical ones.  It looks like she has definitely inherited our love of music!



It is wonderful to see how well she is developing – she seems to discover something new almost every day at the moment – yesterday she discovered waving and now waves at everyone, and today she worked out how to rock her swing if Mummy is a bit slow turning it on!  When we look at her now, we are seeing more of the little girl she is becoming than the baby she was, which is lovely but bittersweet too – lovely as it is to see her develop and learn about the world around her, we don’t want her to grow up too quickly!  She brings so much joy to our lives and we love every moment of seeing her grow and thrive.