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 7 January 2018

Post-Fontan recovery: Day 9 (Ocean Ward)

Jessica had another good day yesterday. Her oxygen requirements are gradually being reduced each day and she seems to be coping well with this. She’s managing to go from bed to chair more easily with help and has been enjoying being able to sit out and play with her toys (and watch CBeebies on the iPad!) She’s still coughing a lot but her chest sounds are better than they were a few days ago. We had a chat over FaceTime with Godmummy Gillian in the morning and another visit from Godmummy Katy in the afternoon which was lovely. Jessica also enjoyed getting to chat to Sophie via FaceTime. She misses her sister but both the girls are coping well with having to be apart for the time being, which I am thankful for.


Jessica and Godmummy Katy giving a big thumbs up


Last night was quite a restless night. Jessica was quite irritable and itchy, and struggled to find a good sleeping position. Her morphine was stopped yesterday and it may be that the restlessness and irritability are as a result of morphine withdrawal. She did have some short periods of being asleep and settled after I took over and has seemed fairly happy this morning so fingers crossed that coming off the morphine isn’t causing too many problems.



The biggest difference I’ve noticed this morning is with Jessica’s movement. She’s moving freely around her bed now, sitting up straight in the middle of the bed and being able to move herself back up the bed into a comfortable sitting position each time she starts sliding down the bed a bit. A couple of days ago, we were constantly having to scoop her up and move her back up the bed; now she is mostly doing it by herself. She’s also much less wobbly on her feet when moving from bed to chair and back again. We’ve still got some way to go but each day brings another little improvement which is wonderful to see.

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