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, 1 January 2012

More fun with feeds

Feeding and reflux have been the main issues over the last couple of days with Jessica. Our attempts at trying to help her keep her feeds down weren’t as successful as we hoped they would be and so she is now on domperidone and ranitidine to help ease the reflux. Despite being on extra medication, she was still bringing up most of her feeds yesterday. The team have now decided that as she was breastfed, she was probably used to much smaller amounts of milk than she has been given over the past couple of days and that her tummy probably just isn’t big enough to cope with the volume of feed and so her feeds are now given two-hourly so she can have smaller amounts but more frequently. The aim is to gradually try and increase the volume of milk and start reducing the frequency of feeds before we go home. So far this plan has been successful – she has only brought up a small amount of milk once since starting the smaller feeds this morning and seems much happier. Despite the reflux, she has managed to put on weight and is now 4460g (9lb 13oz).

It is lovely to see her more awake and happy now as well. We have been making the most of various toys and equipment on the ward – she loved the swing and has happily sat in the Bumbo a couple of times and had a look around at everything. There was a magical moment this morning where three of the babies in the nursery were all on the playmat together – two in Bumbos and the other in the swing – a brief and beautiful moment of normality and almost forgetting that we were in a hospital environment.

We have had a couple of visitors – our friend Helen, who met Jessica for the first time, and Katy, one of Jessica’s godmothers. We also managed to stay up to see in the new year (and had a small glass of champagne with some of the other parents!) although Jessica slept through it all. One of the nice things about the ward is the real sense of community with the other parents who are going through very similar experiences – everyone is so supportive of each other which is wonderful.

Happy New Year to you all and hope 2012 will be a good year for everyone.

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