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.

Monday 19 September 2011

Days 13 & 14 - More new experiences

Despite the dosage of the diuretics being reduced, Jessica lost a little more weight bringing her weight down to 2290g (5lb 0.5oz). Often babies with heart problems have more difficulty with breastfeeding as they tire more quickly and we have been told that we have been quite lucky that Jessica has been able to latch and feed as well as she does. Still, it seems that perhaps she gets tired before she is able to get all she needs and so Jessica is now having a top-up of expressed milk after each feed to help her regain weight.

She had another visitor in the afternoon – Elizabeth, who was our minister at church when we got married, came to say hello and meet Jessica for the first time.

In the evening, Jessica had her first bath and seemed to be very happy with it although had a little grumble when it was time to get out!

It was a relief in the morning when Jessica was re-weighed to discover that she hadn’t lost any more weight – her weight was the same as the previous day and the team may consider reducing her diuretics further if needed and she is having fortifier added to the expressed milk to help her regain weight.

We registered Jessica's birth in the afternoon so she is now officially here!

Michael was making the most of cuddle time with Jessica as he had to go back home in the afternoon ready to be back at work tomorrow. It is a little hard adjusting to not all being together but he hopefully should be back with Louise and Jessica at the weekend. After Michael had left, Katy came to visit and see Jessica again.
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2 comments:

  1. Dana19 September 2011 at 23:00

    She's beautiful!

    ReplyDelete
  2. Louise21 September 2011 at 23:00

    Thank you - I think so too, but then I might just be a little biased... :-D

    ReplyDelete

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