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.

Tuesday, 4 October 2011

Days 25-29 - Heading home

By Friday, Jessica was doing so well that we were able to take her out in the pram and go for walks around the hospital. It was wonderful to finally be able to take her out of the ward and go and sit in the hospital cafe with her.

Jessica was weighed on Friday and seemed to have lost another 15g, bringing her weight back to 2525g (5lb 9oz) but as she had gained so much earlier in the week, the team didn’t seem too concerned by this. She was continuing to feed well and by Monday had passed her birth weight for the first time, gaining another 130g to take her weight to 2655g (5lb 13oz).

Great-Uncle Ken and Great-Auntie Kathy came to visit over the weekend to meet Jessica for the first time and we also had visits on Monday from Tany and cousins Timmy and Karen.

Jessica had an echocardiogram on Monday afternoon which showed that there was still good blood flow through the stent and as she was doing so well and gaining weight, Dr Archer agreed that we could finally take her home.

It was so amazing to finally be able to go home with Jessica this afternoon after four weeks in hospital. There have been times on this journey that we could scarcely have dared hope that this would ever be possible and so to be finally home with our baby girl is the most wonderful feeling ever. We are finally together as a family and getting a taste of ‘normal’ family life. Thank you so much to everyone for your thoughts and prayers which have helped to get us to this point – we have been so very, very blessed and the support we have received on this journey has been truly overwhelming.

Of course, there are still more stages to get through on this journey, but we thank God that we have got this far and pray that Jessica’s journey will continue and she will continue to grow and thrive. We will be having regular visits at home by the community nurse and health visitor who will be monitoring Jessica’s weight and oxygen saturations and will also be going back to Oxford for regular check-ups.

Jessica is due to have another catheter procedure to check the pressures in her lungs at some point in the next few weeks and this will determine whether the next operation is an option. We will keep praying that she will be able to have the next operation to help her survive and will keep you updated with how she progresses over the coming weeks.

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4 comments:

  1. Anonymous5 October 2011 at 08:51

    So happy for the 3 of you, what a blessing Jessica is. Much love, cuddles & prayers for the whole family & I look forward to hearing about the next steps of progress she makes, Suzie Pavitt xxx

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  2. Sally Eyre7 October 2011 at 01:44

    Fantastic news. So thrilled. Sally

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  3. elizabethinchurch7 October 2011 at 17:06

    Delighted that Jessica is home,what a star! All here praying that she continues to make good progress. Elizabeth.

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  4. Sally Eyre12 October 2011 at 20:51

    Still thinking of you guys. Hope you;ve enjoyed your first week at home. Sally (Gillian's friend).

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