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 31 December 2017

Post-Fontan recovery: Day 2 (PICU)

Jessica had a fairly stable day yesterday. She had regular bouts of chest physio and suction to help clear her chest and the secretions have lessened throughout the day and overnight. She came off the pacing wires during the morning and her heart rhythm has been good. She still has the pacing wires in situ for now but hopefully they won’t be needed again.


We’ve had quite frequent wakeful periods and Jessica has definitely been a little more aware of what is going on. She has tried to talk but can only mouth words while she has the ventilator in and has responded to what we’ve been saying to her with nods and shakes of her head. The wakeful periods have been very brief and she responds quickly to being given a little more sedative and muscle relaxant to get her settled again.


Toys and fairy lights at the end of Jessica's PICU bed


The plan for today is to try to extubate her and get her breathing on her own and woken up. Hopefully she will respond well to this.

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