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.

Friday 27 April 2012

More steps in the right direction

Jessica has continued to do well without the oxygen and her sats have stayed in the 80s which is fabulous.  She pulled out her feeding tube yesterday morning and we were hoping that she would take bottles well enough for it not to have to be replaced, but she seems to have worked out now that it is yucky Monogen in the bottles and isn’t very willing to drink it now so we have been giving it down the tube again.  On the plus side though, she has started having solid food again and is doing really well with this – she seems much happier with this than she was before we went back into hospital and seems quite willing to try new tastes.  Our lovely friend Nick popped in with a few pots of MCT-diet purees for Jessica – thank you very much, Nick!


By yesterday evening, Jessica was no longer on the ECG monitor and her central line had been removed so cuddles were much easier.  She was quite overtired and irritable though and needed a little sedative to help her sleep.  A good night’s sleep seemed to help though as today she has been so much happier and smiling a few times – definitely becoming more like her normal self which is a joy to see – although she is definitely unimpressed by the doctors at the moment!  She did enjoy visits from Nanny, Auntie  Loraynne and cousin Keely yesterday though and also had a lovely visit from Uncle Adrian and Auntie Julie today.

Jessica was moved out of high care into one of the bays this morning and is only having her sats checked intermittently now so we are able to walk around the ward with her.  She has been happily playing with her toys today and is quite interested in watching the other babies on the ward.  Her wound was redressed this afternoon and is healing well, although still a little oozy at the moment.

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