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.

Saturday, 24 September 2011

Days 17 & 18 - Off the oxygen

It was a relief to find that Jessica had gained weight on Thursday morning – she gained another 40g, bringing her weight up to 2350g (5lb 3oz). Louise was also making sure she was taking better care of herself too and thankfully her milk supply was also starting to come back again.

Jessica had an echocardiogram in the afternoon which showed good blood flow through the stent that was put in with the last surgery.

Auntie Loraynne came for another visit in the evening and got to have some cuddles with Jessica.

Jessica had a very settled night but despite having some extra formula top-ups during the day, her weight had dropped again by 10g. The dietician came to review and was happy with Jessica continuing to breastfeed and having top-ups of expressed mummy milk where Louise was able to express enough, but if Jessica needed additional formula top-ups, she should have Infatrini, which is a high-calorie formula, to help her regain weight.

Other than the small fluctuations with her weight, Jessica is doing well and was able to come off the oxygen completely. She still occasionally needs a little oxygen immediately after a feed, although the team suspect this is due to reflux and since she has been having Gaviscon before feeds, she has less tendency to drop her oxygen saturations after a feed.

Our friends Hannah and Katie came to visit in the evening and meet Jessica for the first time and Michael came back for the weekend to be with his family and have some cuddle time with Jessica.

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3 comments:

  1. Dana24 September 2011 at 14:17

    So glad to hear she's doing well! Continued prayers for her and all of you.

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  2. Anonymous25 September 2011 at 13:35

    I've just read the whole of 'Jessica's Journey'. What an incredible journey it is. You are all so brave and strong and you have the most beautiful baby girl. I'm so glad to hear that she's doing so well. With lots of love, Sarah, Anthony and Jack (Barker from SUBLDS) xxx

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  3. Louise25 September 2011 at 21:29

    Thank you - we are so pleased that she is doing so well, she is our little miracle x

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