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.

Thursday, 4 January 2018

Post-Fontan recovery: Day 6 (Ocean Ward)

It has been lovely to see more of Jessica’s happy personality re-emerge over the last 24 hours. Yesterday morning, she was making the nurses dance to the music on one of her toys and it was wonderful to see her smiling as she watched them. She’s taking more of an interest in her toys again and has been playing with her hospital Playmobil figures and her Frozen mini figures. She also enjoyed getting to chat to Sophie and Nanny via FaceTime. Sophie is having a lovely time at the moment but we do miss having her with us. Hopefully it won't be too much longer before we can be together again.


Jessica playing with her toys in her hospital bed


Jessica is starting to eat and drink a little more now. She managed to get out of bed with a little help and took a couple of steps to go and sit on the scales and be weighed. She’s had a significant weight gain since her op and the team were a little concerned that she might have fluid on the left side of her chest, as she doesn’t have a drain in this side, and is also still very breathless. Thankfully the ultrasound didn’t show any fluid but her diuretics have been increased slightly to help reduce any fluid retention. The two chest drains on the right side are still draining significant amounts so it will be a little while yet before they are ready to come out.


A sleepy Jessica in her hospital bed on Ocean Ward


Yesterday was quite a busy day for Jessica with dressing changes, having cannulas removed and replaced and having an echo done.She had so many things done that she’s filled up her first sticker chart and the second one is already half-full! By the time there was an opportunity for her to have some time out of bed and in the chair, she was exhausted and just wanted to go to sleep. Today should hopefully be a little quieter though so we should be able to get her out of bed for a while in the chair and perhaps do some colouring and arts and crafts.



We still have quite a way to go on the recovery front, but we are definitely taking little steps forward every day. Jessica has constantly amazed us with how well she is coping – she takes so much of what happens in her stride and we are so very proud of her.
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1 comment:

  1. Unknown4 January 2018 at 14:26

    I can see why you're proud, she's an amazing little girl! It's great to read that she's recovering. I hope it won't be too long before you're all together again xx

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