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.

Monday, 28 May 2012

Sleepless nights, street parties and sight concerns


Jessica now seems to have adjusted well to feeding without the nasogastric tube and is gaining weight beautifully – now up to 5860g (12lb 14oz) which is fabulous.  She is taking more and more solid food now and has been enjoying exploring finger foods (and making lots of mess!)


 The warm weather and light mornings seem to be playing havoc with her sleeping patterns at the moment though – we still remain unconvinced that the early hours of the morning are a good time for staying awake and wanting to play despite Jessica’s best attempts to convince us otherwise!  Hopefully this is just a temporary phase and thankfully Nanny has come to stay and help out whilst Michael is away which improves the odds of being able to catch up on a little lost sleep!


 Over the past week or so, we have noticed that Jessica seems to have developed a lazy eye which she has probably inherited from Michael who also had this as a child, and we have been referred to King Edward Hospital for further investigation on this.

 Otherwise everything seems to be going well and we have been enjoying going out and about more in the nice weather.  Jessica also attended her first street party at the weekend but was quite unimpressed about it all!

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