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.

Saturday 13 January 2018

Post-Fontan recovery: Days 14 and 15 (Ocean Ward)

Jessica has had another good couple of days. Getting around the ward has been much easier since the chest drain came out as she’s only had an IV pole to take long with her. She quite enjoyed standing on the pole and being pushed around – a much quicker and easier way to get about! She has been able to come into the ward kitchen with Mummy to have breakfast and her appetite has improved so much that the dietitian has been happy to stop Jessica’s overnight feeds through the NG tube. Hopefully this will be able to come out at some point today.


Jessica riding on her IV pole


After being without Sophie for more than two weeks, it was wonderful to finally be reunited again on Thursday evening. The girls were so happy to see each other again and it was so lovely to have Sophie with us once more. She has had such a lovely time at Nanny’s and has been so good throughout her visit. She didn’t cry once during her time there but I think the emotions from being separated from us for so long hit her later that evening when it was time to leave Mummy and Jessica on the ward and go and stay in the Ronald McDonald House with Daddy. Thankfully, she was much happier in the morning though and was in no hurry to leave the toys in the playroom at “the M house” and come up to the ward to see Mummy and Jessica!

Jessica and Sophie on the ward

Jessica, Sophie and Nanny sitting on Jessica's bed


Jessica loved seeing Nanny again on Thursday evening when she came up with Sophie, and enjoyed visits from Grandma, Grandad and Godmummy Katy yesterday. It is lovely to see her being able to move about more easily and sitting up and chatting away to everyone. We had the first mention of the “H” word on Thursday’s ward round with the doctors considering it for the beginning of next week, all being well. With our previous surgical stays having been at least four weeks, it looks like this time around we will hopefully be getting home a little sooner!


Jessica playing the toy piano on the ward

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