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.

Saturday, 5 November 2011

8 weeks - approaching the next step

Jessica is now eight weeks old and has had another sociable week – attending her second wedding and her first curry night and was very chilled about meeting a few more people and having lots of cuddles with various friends on both occasions. She also went to visit Uncle Ken and Auntie Kathy and meet various cousins, including another new arrival to the family – baby cousin Barnaby who is just four weeks old (but already bigger than his older cousin!)

She has had a bit of a cold this week which has made her quite snuffly and out of sorts earlier in the week which we were a little concerned about – it has been helpful being able to call the cardiac liaison nurses at John Radcliffe hospital for advice whenever we have any worries though and by Thursday, Jessica seemed much happier and much more like her usual self although is still a little snuffly, particularly at night and first thing in the morning.

We had our routine check-up at John Radcliffe hospital on Friday and Jessica’s oxygen saturations were at the bottom end of her normal range which is likely to be due to her having a cold. The team were considering whether to admit her and keep an eye on her in hospital overnight but as she seemed well otherwise and wasn’t struggling with her breathing, they decided that we should just keep an eye on things. Needless to say, we will be calling the hospital if we do have any concerns, but as she now seems to be getting better, hopefully the oxygen saturation levels will be a bit better when the community nurse next visits on Monday.

On the plus side, Jessica is continuing to gain weight well – she is now up to 3320g (7lb 4.5oz) and is 51cm long. The heart scan also shows that her heart is still functioning well which is good.

We now have a date for the cardiac catheter procedure – this should be taking place on Monday 14th November and so we will be going back to Southampton for this next Sunday and will be back in hospital for a few days. This will involve measuring the pressures in Jessica’s lungs which will give an indication of what the next stage in this journey will be and we are naturally quite anxious about it. Please can you keep our little girl in your prayers as we approach this next step and pray that we will have good news and that Jessica will cope well with the procedure.

1 comment:

  1. Poor little Jessica having a cold - there's so many bugs going around at the moment so glad to hear she's better. Thanks for the update - have been eagerly waiting for news. Big hugs Geri & Matt xx

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