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 10 January 2012

Home, hospital and back home again

It was wonderful to finally be able to come home with Jessica yesterday evening after another good day with her feeds. She passed the ‘car seat test’ (having her oxygen saturation levels measured whilst sitting in a car seat for an hour) with flying colours – her sats were about the best we’ve ever seen them.

Our first night back at home went very well – Jessica had a lovely settled night and slept through the tube feeds. However, she then pulled out her nasogastric tube just as Louise had prepared her morning feed which meant that the community nurse needed to come out and re-site the tube which Jessica was very unimpressed about.

Our problems with the feeding tube were not yet over though – later on in the evening we were unable to aspirate the tube and were concerned that it might have become blocked or dislodged which resulted in us having to make a trip to Wexham Park hospital. The car journey seemed to have helped move the tube though as by the time we were seen by the nurse, there were no problems aspirating it!

Jessica will continue to have her oxygen saturation levels monitored at home and we will be going to Oxford for a check-up at some point next week. We anticipate that we will be returning to Southampton in a few weeks’ time for a cardiac catheter investigation to help plan the next stage but at the moment, we will enjoy being able to have time at home as a family once again. As always, thank you to everyone who has been supporting us, thinking of us and praying for us during our stay in hospital and we will continue to keep posting updates over the coming weeks.

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