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.

Monday, 29 June 2015

Four years on from the first step

This time four years ago, Jessica had just taken the firstbig step on her journey, having come through her very first heart surgery whilst still in the womb.  Four years on from being given that glimmer of hope, it is wonderful to see Jessica continuing to do well.  We will always be so thankful to the wonderful team from the John Radcliffe who took that chance on a risky and new procedure four years ago in order to give our little girl a chance to survive.


 
We’ve had a couple of hospital appointments in the last month.  Jessica had her cardiology check-up at Oxford towards the end of last month and her heart function continues to be good, with no plans for any intervention to take place this year which is reassuring, and the next check-up due to take place in early September.  She also had a check-up for her squint and the ophthalmology team are happy that Jessica’s vision is developing well with the squint continuing to flick from one eye to the other so neither eye is dominant.  At present, the plan is to continue monitoring although it may be that she will need surgery for this at some stage.




Jessica had her first sports day at preschool last week which was a very proud moment.  As she crossed the finish line a long way behind her friends, she gave Mummy a big grin and said “Look Mummy, I’m the winner!”  It was such a joy to see how much she enjoyed taking part even though she couldn’t quite keep up with the pace of her friends.






We’ve had lots of lovely days out at Legoland; visited two gold lock controls on the Thames as a slight variation to our gold postbox challenge; went on a hunt around London to find all 50 Shaun the Sheep sculptures; saw In the Night Garden Live with our friend Denise and godmummy Katy and enjoyed a day out at the Charlie Jones Foundation family fun day. 










Four years on – what a blessing it is to be able to look back with our beautiful, happy girl here with us and doing so well.  Laughing whilst chasing Sophie around the garden, chattering away and coming out with phrases that make us giggle (“come on Mummy, tuck in!” was one that made me laugh today) – our little miracle continues to be a ray of sunshine and we are very thankful for her.


Little Hearts Big Love
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1 comment:

  1. Sounding Like My Mother15 July 2015 at 18:18

    Aww, so pleased she is doing so well - a miracle indeed! I know what you mean about being able to look back on things. So many things we do as a family that can be taken for granted until you realise that they were never even on your radar in the beginning!

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