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, 1 January 2018

Post-Fontan recovery: Day 3 (PICU)

Jessica is now off the ventilator and breathing well by herself with some extra oxygen to help keep her sats up. She was quite unimpressed with everything when she first woke up – especially the oxygen prongs up her nose and not being able to drink very much for a while. Her throat was quite sore from the ventilator and it took a little while before her voice started to come back. She was a bit spaced out from the morphine and told us that she was “better now” and wanted “to go downstairs!”


She became more settled as the day went on though and coped well with only being allowed small sips of water. She did manage to eat a yogurt and a couple of pieces of melon which hopefully also helped to quench her thirst a little.


We had a bit of a bumpy start to the night when the shift changed. Jessica had a lot of secretions on her chest that had built up a bit during the day. We had quite a few bouts of her sats dropping quite low and her needing chest physio and suction to help her cough up the secretions which wasn’t very pleasant for her. Thankfully, once she’d had a really good cough, her sats started to settle again and stay more stable. She’s also been on a nebuliser overnight to help with those chest secretions.


Jessica, me and hubby seeing in the New Year on PICU


We saw in the New Year on PICU and Jessica woke up very briefly just before midnight and stayed awake to see in the new year with us. To be seeing in 2018 with our brave little superstar is just the best feeling ever. We did miss having our little Sophie with us though but she seems to be having a lovely time with Nanny at the moment which is good. Jessica did tell us at one point last night that she wanted Sophie – hopefully we will all be together again very soon. Thank you so much to lovely godmummy Katy who dropped off some snacks and a little something for Jessica to help us celebrate the New Year.


Michael and I took turns overnight to stay with Jessica now that she is more awake. This morning, she is looking much more settled and even gave me a little half-smile when I arrived back on PICU after some much-needed sleep. The right side of her chest sounds a little quiet today so she is going to have a chest X-ray this morning to see what might be causing that. She’s continuing to head in the right direction though.


Happy New Year to you all!
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3 comments:

  1. Unknown1 January 2018 at 09:30

    You are doing amazingly, Jessica! And thinking of your mummy and daddy for staying so strong as they help you through this.

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  2. Plutoniumsox.com1 January 2018 at 11:10

    So glad to see how well she's getting on. I hope she has another good day today and continues to recover well.
    Nat.x

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  3. Dear Mummy Blog1 January 2018 at 19:55

    Happy New Year guys! She is one strong, brave little girl! Glad you saw in the New Year with her. Hope she continues to recover well x God Bless x

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