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, 23 April 2012

Off the ventilator



As Jessica has been doing so well and her chest secretions were getting less, the team decided that she was ready to be extubated and so her ventilator was removed this morning and she is now back on optiflow oxygen.   So far her oxygen saturation levels are staying in the right range and she is coping well.  She is having saline nebulisers every four hours or so to help loosen up her chest secretions and this also seems to be helping.  Now that the tube has been removed, she is able to voice her objections to things – this morning her cries were very hoarse but this has improved over the course of the day and at one point she was making “ma-ma-ma” sounds which was lovely to hear.


She is quite woozy today as a result of the morphine and sedatives that have kept her comfortable and settled over the last few days.  The nurses are observing her closely for signs of morphine withdrawal as she may experience this again after having been on morphine for a few days now.  We are hoping she won’t experience too much withdrawal this time as last time she was quite distressed by it.  The morphine infusion has been reduced today and although there are moments when she focuses on us, mostly we can see from her eyes when she looks around that she is ‘away with the fairies’ a bit, but so far they seem to be nice fairies!  

Grandma and Grandad popped in for a visit this afternoon and were pleased to see Jessica looking better than she did when they last visited – her breathing is much easier and less rapid now so hopefully the paraflu virus is on the way out at last!


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