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 21 November 2017

Back in limbo-land


Jessica’s Fontan has had to be postponed once again. We were told this morning that her surgeon, Mr Viola, is unwell and that PICU is also full at the moment which means that her surgery needs to be rescheduled once again.  As yet, we don’t know what the new date will be. In the meantime, it’s back home again while we wait, and back to making the most of normality.


Jessica in the playroom on Ocean Ward



Jessica is very disappointed about her surgery being postponed yet again. She had a good night and had started IV fluids a few hours before we found out about the surgery being postponed. She soon discovered that she could ride her IV pole like a scooter and that the most fun way of getting around the ward was to stand on it and let Mummy push her around. I was relieved that she’d only had her breakfast a couple of hours before and hadn’t had a long period of being nil by mouth before finding out, as had happened when her Glenn was postponed.

Jessica scooting along on her IV pole



It is hard to have to go home and go through all the build-up yet again but it can’t be helped. We will continue to hold on to our faith that the surgery will happen at the right time for Jessica. We also found out after being told that Jessica’s surgery had to be cancelled that her bloods showed that her CRP levels were a little raised. This suggests that she might be brewing an infection. She and Sophie have both had coughs and colds recently (which they seem to be passing back and forth!) Hopefully having a little longer to wait will help her get rid of the winter bugs too.

Jessica with Godmummy Katy

We popped in to visit Godmummy Katy after leaving the hospital which helped to cheer Jessica up, before heading to Nanny's to pick up Sophie after her sleepover. It is lovely to have our family reunited again even though we know we have it all to come once again!


We will update again when we have been given a new date. Thank you again for keeping us in your thoughts and prayers so far. It helps so much to know that our little girl is surrounded by so much love.

No comments:

Post a Comment