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.

Sunday, 25 September 2011

Days 19 & 20 - Gaining weight

Jessica is doing really well with her weight gain now, gaining 70g when she was weighed on Saturday and then another 20g this morning so her weight is now up to 2430g (5lb 5.5oz) which is great. Feeding is going really well – she is having mostly breast milk with the occasional top-up of Infatrini and is now managing to breastfeed for longer.

Jessica is mostly off the oxygen although still needs to have an occasional waft of oxygen just after a feed, particularly when the feed has been quite a large one! It is lovely to have most of the tubes removed now – with the oxygen tube gone, we have been able to see all of her beautiful little face for the first time since those few minutes with her after she was born! The only wires she has left now are for the sats monitor and the apnoea alarm.

We have had a few visitors over the weekend with friends popping in to meet Jessica for the first time – she has now met Neil and Sandra, Robin, Phil and Becky, and Pippa.

It has been lovely to have Michael back for the weekend, although he had to go back this afternoon as he is working this evening. Jessica enjoyed having lots of cuddles with her daddy.

At the moment, it looks like the plan for the coming week is to hopefully transfer to Wexham Park hospital around the middle of the week. This would mean that Louise and Jessica would be much nearer home and will help the paediatric team at Wexham Park to become more familiar with Jessica’s heart condition which will be useful as it would be our nearest hospital in an emergency.

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2 comments:

  1. Pippa25 September 2011 at 21:35

    So fantastic to see you all today, Jessica is such a beautiful baby and such a fighter, so proud of you all xxxx Pippa

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  2. Anonymous26 September 2011 at 11:03

    She's an absolute beauty! so glad she is doing well! praying on for you all! susan , gillain crossleys friend

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