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 17 December 2011

On TV and off the ventilator

Jessica is doing really well. She finally had her ventilator tube taken out this evening and is now on CPAP. Her observations are remaining fairly stable and she is much more awake than yesterday, although isn’t too impressed about all the tubes and despite being quite hoarse from the ventilator, is trying her best to let us know about it.

We had a visit from Santa in the afternoon who came to deliver presents, along with a camera crew in tow. Louise was interviewed briefly about our feelings about Jessica spending her first Christmas in hospital – we are just so happy at the prospect of her being here for Christmas that we really don’t mind where we spend it. With everything going on in PICU, we soon forgot about the camera crew until a text from a friend informed us that Jessica had been on Meridian News that evening! The news bulletin is online here if you want to see our little girl's first TV appearance!

It is nice to see her a little more awake today although she is still quite drowsy with the morphine she is having but hopefully this will start to be reduced soon. Last time she was a little jittery as a result of morphine withdrawal so we are hoping that this won’t be the case this time. We are also hoping that her central line will be able to be removed tomorrow so that there will be a few less tubes going in!

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2 comments:

  1. Debbie.. freind of Katy Lewis17 December 2011 at 23:42

    I have heard lots about Jessica from Katy, I have just read her shared link.... I am so very pleased for you that Jessica is doing so well today... having a child in icu is so very hard on all of you, I've been there... you need to have nerves of steel! be strong & be proud of her.... she's a fighter.... sending her healing hugs & my warmest wishes to you both, may you spend a safe, calm christmas together & hopefully the new year will be good to you all xxxx

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  2. Louise20 December 2011 at 14:48

    Thank you - Merry Christmas to you too x

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