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 13 September 2011

Day 7 - A change of plan

Thinking that Jessica’s next surgery was scheduled for the next day, Tuesday, we decided that we were just going to have a quiet day having lots of cuddles with our beautiful baby girl in preparation for this.

Jessica was much more settled than she had been over the previous couple of days and was able to come off the CPAP for a short while in the afternoon in order to be weighed and measured. She has lost 200g from her birth weight and now weighs 2350g (5lb 3oz) which is normal – most babies lose some weight in the first week after birth. However, because Jessica will need further surgery in the coming weeks if tomorrow’s operation is successful, the doctors would like her to put the weight back on as quickly as possible and so fortifier is being added to the mummy milk to help with this. Her length was also measured and is 48cm so she is quite long for her size. The dressing on her chest has also been removed and she has quite a neat wound from her first big operation but it seems to be healing well.

We also managed to dress her in one of her little babygros for the first time – although had to leave her arms out because of the cannulas in them.

In the afternoon, the anaesthetist came to talk to us about the operation. Our cardiac consultants from Southampton were having a team meeting in Oxford with our other consultants and at that point we hadn’t heard when the surgery on Tuesday was likely to be. We were then told that the surgery would now be happening on Wednesday as there were other more urgent cases happening on Tuesday and also the whole cardiac team would be around on Wednesday and so the team felt it was better to delay Jessica’s operation another day. On the plus side, it gives us another day for cuddles and Jessica has another day to recover from her last operation.

On the whole, Jessica is doing very well with her recovery although keeping her cannulas in to allow her drugs to be given and blood gases to be measured is tricky as she is quite feisty and determined to have her hands near her mouth and so the cannulas in her elbow creases are getting a hard time. The nurses have tried to double splint her arms to try and keep them straight but Jessica soon works out how to get around it and bend her arms again! She is definitely a little fighter and hopefully will continue to be so on Wednesday.

We’ve both been amazed by how much support we are getting from so many people – thank you to everyone who is praying for and thinking of our little girl.

6 comments:

  1. Taking off the splints? She's smart AND a fighter. Mind you, I think it's the magic of mummy & daddy cuddles :-) Thinking of you all xx Geraldine & Matt

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  2. Thinking and praying for you all! Susan ( Gillian Crossleys friend)

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  3. lots of luv & prayers 4 weds. hope all goes well. xxxxxxx

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  4. Sending lots of love to you all xxxxx

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  5. Lots of love to all three of you x from Vicky McManus x

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  6. Praying for you all. Fiona (a friend of Gillians)

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