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.

Wednesday, 13 November 2013

Adjusting

Jessica seems to be adjusting very well to being a big sister. Most of the time, she just wants to give baby 'Sofa' (as Jessica calls her) lots of cuddles and kisses and share toys with her (which Sophie is not always very appreciative of as Jessica can be a little too enthusiastic with her loving and we have to remind her to be gentle!) There are of course times when Jessica struggles a bit with having to share Mummy and Daddy's attention - she has had a few clingy moments, and a couple of night wakings where she gets very upset and needs lots of cuddles to help her settle down again. Saying 'no' to her is a huge tragedy at the moment and often results in big tears but these are all things we were expecting and so lots of cuddles and patience are needed whilst she adjusts to this huge change in her life. These moments are generally short-lived and her reaction to Sophie has been very affectionate on the whole so Jessica really is coping quite well with it all.
 


We had a check-up with the community nurse today and Jessica’s sats are stable, staying at around 80. She has had a bit of a cough and a cold recently and has needed to have a couple of puffs from her salbutamol inhaler just before bedtime just to ease the rattliness in her chest but thankfully this is now improving. Jessica’s weight today was 11.27kg and so she seems to have lost weight since her 2 year review but as her last weight was taken when she was fully clothed and she still is following the 25th centile line nicely on the growth chart, it is possible that the last weight was not quite so accurate and so this is not a cause for concern.


Jessica is really learning lots of new skills at the moment – she has mastered most of her wooden puzzles and is starting to put jigsaws together, she can count from 1 to 10 (although usually misses out 1 and 7 and most of the time just counts from 2 to 6!) and is getting very good at building towers with her wooden blocks. She can be very particular about where things go when putting things away and if she spots something has been put in the ‘wrong’ place, she soon moves it back to where it should go! Jessica has also learned how to use the remote control for the TV and has managed to turn it on and find a channel with cartoons (we are not sure this is a good thing!)



We have a couple of check-ups coming up later this month – Jessica has an appointment with the eye clinic next week and then will be having her heart check-up at Oxford towards the end of the month and we will update again after these appointments and let you know how she is getting on.

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