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, 8 January 2018

Post-Fontan recovery: Day 10 (Ocean Ward)

Jessica is continuing to make small improvements every day. Her oxygen requirement is getting lower and we’re hoping that she’ll be able to move off the Optiflow and on to normal oxygen tomorrow. The amount of fluid draining from the remaining chest drain is getting less although it’s still too much for the drain to come out just yet. She had a much more settled night last night and doesn’t appear to be having any more side effects from the morphine being stopped.

Jessica and Grandad playing with the Lego


Yesterday was mostly about trying to encourage Jessica to eat a little more. She’s now taking more of her medicines orally (instead of down her NG tube) and is managing to eat very small amounts (mostly strawberries and grapes!) We had a lovely visit from Grandma and Grandad yesterday afternoon and Jessica enjoyed seeing them. Grandma read her a story and Grandad played with Lego and playdough with her. I’m not sure who was having more fun with the playdough though – Jessica or Grandad!
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