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.

Sunday 8 January 2012

Milestones and moving forward

Jessica has been doing very well over the last few days and we have now managed to increase the amount of milk she is able to drink and have gaps of three-and-a-half hours between feeds which is much more manageable than the two-hourly routine we were on just a few days ago! Whilst we are still having the occasional feed coming back up again, it is nowhere near to the extent it was before so the reflux medication and gradual increase has obviously helped. Ultimately we are still aiming for getting a four-hourly gap at night but the current feeding schedule is one which will be manageable at home.

Jessica has now been moved into one of the side rooms so that Louise can room in with her and provide all her care (with support from the nurses as needed) in preparation for going home. After more than three weeks of having to sleep in a different room (and sometimes a different building) it is great to be able to be so near to Jessica again at night.

Jessica is continuing to gain weight and is now 4600g (10lb 2oz). She was four months old on Friday and celebrated this little milestone by rolling on to her tummy for the first time which was amazing. Unfortunately she had just brought up a feed a moment earlier and rolled straight into it which was less good and meant a bath was definitely in order! She is becoming more and more interested in her toys and can spend ages watching her little hands in fascination. She is also becoming even more of a wrigglebottom than she was before and we have found her in some very interesting positions in the bottom of her cot in the morning where she has moved about so much. It will be interesting to see how she copes with going back to sleeping in the much more confined space of her Moses basket!

Jessica has had a chest X-ray and echocardiogram today and all looks well. Michael has been back with us over the weekend and was greeted with a very big smile from Jessica who was very happy to see her daddy again! She has also had visits from Nanny and Auntie Loraynne and met our friends Emma and James for the first time. We are hoping that we will be able to go home tomorrow which will be wonderful.

2 comments:

  1. The first photo where's she's got that slight grin = ADORABLE!
    So pleased to hear that Jessica continues to fight and continues to surpass everyone's expectations. Fingers crossed you're all home together soon :-)

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  2. What an amazing and very beautiful daughter you have. Continuing to pray much for you all.
    Eva (Green)

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