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, 21 April 2012

Staying stable

After the drama of the previous night, it was quite a relief that Jessica had a very settled night last night.  She has stayed on the ventilator today and has had the occasional wakeful moment but has mostly been sedated as when she is awake, she is very wriggly and feisty, letting us know that she is quite unimpressed by all the tubes and wires.  As one of the doctors described it, she “likes to go from zero to hero” – one minute sedated, the next awake and trying to remove everything attached to her!

She still has quite a lot of secretions on her chest although these seem to lessening and her CRP and white cell count have now decreased, indicating that the infection is getting better.  Overall, it has been quite a settled day – much needed after a week of riding the PICU rollercoaster!

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6 comments:

  1. GClarkHellery21 April 2012 at 21:45

    Thanks for keeping us updated. Jessica certainly is a hero! Love and hugs xx

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  2. Carole W.22 April 2012 at 14:51

    What a little fighter she is! You're never far from our thoughts. XX

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  3. Anonymous22 April 2012 at 17:06

    im thinking of you all everytime i see an update my heart skips i have no idea what your all going through each day.
    I hope and pray you make it out of these tough times and your beautiful little girl grows up to b a strong beautiful woman.
    life tests us for no reason and we all think why has this happened to us i do everyday i lost my son he was stillborn at 40 weeks on my due date, so i understand when you say about appreciating life it changes you and how u view the world you see what and who is important and yes miracles do happen. keep fighting little one xxxxxxxxxxxxxx sarah x

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    Replies
    1. Louise22 April 2012 at 21:24

      Sarah - I am so very sorry that you lost your beautiful little boy. I think I may have heard your news via my sister if your loss was recent - and if so, you and your family have been very much in my thoughts and prayers recently. I cannot even begin to imagine the pain you must all be feeling and my heart goes out to you all xxxx

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  4. Unknown22 April 2012 at 20:57

    Hoping that things stay settled.

    Neil & Sandra xx

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  5. Louise22 April 2012 at 21:24

    Thank you all x

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