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 18 September 2011

Day 12 - Another move

Jessica decided overnight that now that she was being fully breastfed on demand, she no longer needed her nasogastric tube and so decided to pull this out herself! She had a weigh-in in the morning and unfortunately had lost weight from the previous day, going back down to 2340g (5lb 2oz). The doctors came to review and decided that the weight loss could be due to Jessica being on diuretics four times a day so have reduced this to three to see if this is the cause. Jessica seems to be feeding well and settling after a feed so we are hopeful that she is getting enough.

In the afternoon, Jessica was moved from the high-dependency bay on Ocean Ward into the nursery and whilst her heart rate and oxygen saturation levels are still constantly being monitored, she no longer needs to have a constant ECG trace. Another step in the right direction! Her oxygen saturation levels tend to fluctuate so the amount of oxygen that she needs has to keep being adjusted up and down at the moment but she is doing well overall.

In the evening, Jessica had another visit from Grandma and our friend Nick also popped by to say hello again.

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