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 30 September 2011

Days 23 & 24 - Off to Oxford

It was time to say goodbye to the staff on Ocean Ward on Wednesday morning as Jessica and Louise were off on a road-trip, heading to John Radcliffe hospital in Oxford – a bit closer to home and another step nearer to actually going home.

Jessica slept in the pod the whole way to Oxford but was a bit unsettled her first night in her new surroundings. Like when we left PICU, it took a little while to readjust and we missed Ocean Ward at first, having become used to the routine there but by morning we felt more settled.

The team on the ward here were already very aware of Jessica and her history – apparently she has been talked about quite a lot as a result of the surgery she had at 28 weeks gestation. Other than Dr Manning and Dr Archer, we hadn’t seen any of the consultants that were involved in that surgery since it happened, so it was a nice surprise when Dr Ormerod popped in to meet Jessica and see how she was doing.

Louise is able to have a bed next to Jessica’s cot here which makes it much easier with night-time feeds – she no longer needs the nursing staff to come and wake her when Jessica needs a feed.

Grandma has already been to visit and now that we are nearer home, Michael is able to come and visit after work as well.


Jessica’s oxygen saturation levels are no longer being continuously monitored – as they have been stable for a few days without her needing any oxygen, they are now being monitored every four hourly when her other observations are checked. Now that Jessica is not hooked up to any wires, we can take her for a walk up and down the ward. Her weight is now being checked twice a week and hopefully she will continue to gain weight.

The current plan is to monitor how Jessica gets on over the next few days but as she is doing so well, we may be able to go home early next week which would be wonderful.

3 comments:

  1. Fabulous news. Jessica is doing so well. Can't wait to come and visit when you get back home. We shall be bringing the twins along too. Love from G.A. Marls x x x x

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  2. Just brilliant news and she looks so content. I love the photo of Jessica and Michael catching some Zzzzs.

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