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 14 March 2012

Ups and downs

It has been a bit of an up and down week for Jessica. She has lost a little weight again – back down to 5060g (11lb 2oz) and so we have increased the amount of Infatrini she is having and hopefully she will start to regain weight again soon. Our community nurse felt that the weight loss is likely to be due to the fact that Jessica has had a bit of a cold and her cough is still persisting. She seems well in herself though and her oxygen saturation levels have been good so hopefully this is just a temporary blip.

Weaning has been a bit hit and miss – Jessica hasn’t been too keen on the various purées offered so far although has progressed from objecting strongly to the very first spoonful to at least tasting a little more before starting to object!

Jessica has been a little more unsettled this week and not quite as happy as she usually is due to the fact that she has been teething. We are still awaiting the appearance of the first tooth but feel that this may not be too far off! She also had her third round of routine immunisations which resulted in quite an unsettled night afterwards – the combination of a cough, teething and jabs was not a happy one!

We are still having issues with obtaining clopidogrel (one of Jessica’s medications) locally and the Oxford team continue to try and resolve this.

Jessica has been having quite a sociable week – going to see Nanny for her birthday (and getting to see lots of aunties, uncles and cousins at the same time), having lunch out with Louise’s midwifery friends for Glenis’s leaving party and going out for a curry with our friend Neil.


It is looking like Jessica’s next stage will take place at some point in the next couple of months. We are a little concerned with the timing for this as Michael will be away working for a few weeks from mid-May and we are also hoping that the surgery will take place before Mr Haw leaves. We would be grateful for any prayers regarding the timing of the surgery – obviously we want the surgery to happen at the right time for Jessica but preferably not when Michael is away.

Posted by at
Labels:

1 comment:

  1. Unknown15 March 2012 at 20:22

    Thinking of you all; I do hope everything comes at the right time.

    Neil x

    ReplyDelete

Subscribe to: Post Comments (Atom)