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 13 October 2011

First week at home

Jessica is now five weeks old and has been home for over a week! It has been wonderful to all be together as a family and to be able to go out and about with her. She seems to be doing well and is continuing to gain weight - up to 2860g (6lb 4.5oz) at the last weigh-in.

We are now having regular check-ups with the health visitor and also the community nurse who comes to check Jessica’s oxygen saturation levels and weight once a week. We are also going back to John Radcliffe every couple of weeks for heart scans. The latest heart scan shows that there is still good blood flow through the stent in her ductus arteriosus and her oxygen saturation levels are remaining stable.

It has been lovely to be able to take Jessica out and about and to catch up with friends. It was particularly good to be able to take her to church last Sunday and so she could meet all our friends there who have been praying for her. Louise also took her along to the Healing Rooms in Perivale as they were also praying for Jessica during Louise’s pregnancy and it was wonderful to be able to bring Jessica and thank God there for our little miracle. We also popped in to a Pastiche rehearsal so that all our friends there could meet Jessica.

We have had a few visitors since we have been home – Nanny and Auntie Twinny were finally able to visit again having missed out over the last couple of weeks due to being unwell and cousins Ebony and Erin finally got to meet Jessica. Michael’s cousin Clare also visited with her twin daughters Seren and Siân and met Jessica for the first time. We also have had visits from Tracy, Bryan and Nicki and Great-Auntie Marlene, not to mention Grandma and Grandad who have also been enjoying being able to see more of Jessica now that we are home.

It is looking like Jessica will be having the catheter procedure to check the pressures in her lungs in early November. At the moment, we are just taking each day as it comes and enjoying every moment of being able to have her home with us – what a huge blessing it has been to be able to be home together as a family.

As always, thank you to everyone for your continued support on this journey – we will continue to keep you posted with regards to Jessica’s progress.

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6 comments:

  1. Dana13 October 2011 at 18:51

    She's beautiful! I'm so glad to hear that she's home. :)

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  2. Anonymous13 October 2011 at 19:02

    So happy for you that you are home and all is well, she is so beautiful and looks so well and healthy. Love to you all xxx Pippa

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  3. Anonymous13 October 2011 at 20:53

    I am over the moon for you all. She looks so happy to be home with her mummy and daddy and i cant wait to come and visit you all!! let me know when you are free for a visit and until then enjoy every minute of her :) love Katie G xxx

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  4. Nick Le Prevost13 October 2011 at 21:41

    Brilliant! I love the second picture of her on the sofa! :-) So pleased for you all that you are finally getting some quality family time. Let us know when you're back in Southampton, we'd love to catch up! Nick xxx

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  5. Anonymous13 October 2011 at 23:48

    Bless you guys! amazing story, praying for you all! susan, gillians friend!

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  6. james17 October 2011 at 18:41

    I love the final picture. Doesn't she look like her dad?

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