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.

Wednesday, 18 January 2012

Settling back into being home

Our first week back at home has gone well. Jessica has been enjoying playing with some of the toys she received for Christmas and the activity mat has gone down particularly well. She is getting better at being able to reach out and grab her toys and is now at the stage that all her toys have to be tasted once she has managed to get hold of them!

Thankfully the feeding tube has stayed in place and Jessica is now managing to tolerate four-hourly feeds. She still brings up the occasional feed but the reflux is much better than it was a couple of weeks ago and she is gaining weight beautifully – now up to 4870g (10lb 11.5oz) and 57.8cm long. Gail, our lovely chiropractor has also been treating Jessica and hopefully this has also helped to ease the reflux.

The community nurse is visiting twice a week to check Jessica’s weight and oxygen saturation levels and all has been well with these. We had an appointment in Oxford on Friday for an echocardiogram. All looked good on scan and our cardiologist decided that the diuretics dosages that Jessica was on could be halved and hopefully stopped at the end of this week if she continues to do well.

Jessica attended her third wedding on Saturday – a wedding blessing for our friends Toby and Ange who got married in Australia at the end of August. We would have loved to have been there for their big day back then but it was too close to the due date to be able to fly out there so it was great to be able to celebrate their marriage with them and for them to be able to meet Jessica.

One of the good things about our recent hospital stay was that we got into a more established routine with Jessica which we have been able to continue since coming home. She continues to be a very happy and smiley little girl and brings so much joy to our lives. We are truly blessed with each and every day we have with our little miracle.

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