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.

Friday 9 December 2011

13 weeks - Preparing for the next step

Now that the weather has got colder, we are discovering what an impact this can have on Jessica’s oxygen saturation levels. Our little house can get quite chilly on cold days if the heating is not on and this was the case when the community nurse visited earlier in the week. Jessica was feeding and seemed fine but when she was undressed ready to be weighed, her feet were more purple than usual and then her face had started to look a little more blue. We thought we were heading into hospital a little sooner than anticipated as Jessica’s oxygen saturations were measuring lower than usual but once she was dressed and wrapped in extra layers of clothing, her colour improved and oxygen saturation levels came back up. Needless to say, the heating is now on much more and we are making sure Jessica is very warmly wrapped up when we are out and about!

We had a routine check-up in Oxford towards the end of the week and Jessica is gaining weight beautifully – she is now up to 4060g (8lb 15oz).

The date of the next operation is drawing closer and we are due to go back into Southampton on Tuesday to prepare for surgery on Wednesday 14th December. This will be her biggest operation so far and involves reconstructing the first part of her aorta (main artery to the body) so that she doesn't need the duct which was stented and moving it to the right side of the heart from the left. This is the Norwood procedure. Then they also plan to carry out the next stage called a semi-fontan or Glenn procedure which will plumb the superior vena cava (main vein from the top half of the body) into the pulmonary artery (to the lungs). Blood will then flow from the top half of her body straight back to the lungs without being pumped. We are quite anxious that she is able to cope with both the surgery itself and also her new circulation.

We have been very fortunate that so far she has been able to bounce back from her previous operations with few complications along the way and it's easy to look at her and how well she looks and forget the underlying problems she has. Times such as now bring things into focus and we remember that there are several hurdles to cross yet on the path ahead and the future is not always certain. Nevertheless the support of others and our faith help to keep our spirits up and we can only hope for the best ahead and see what the future brings,

Please continue to keep us in your thoughts and prayers as we prepare for this next step on our journey.

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