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 December 2011

Fun with feeding

The last couple of days have been a little bit of a rollercoaster ride, mostly centred around feeding issues. As it is quite an uphill struggle trying to get Jessica to take much of her feed via a bottle and she gets quite upset about it, we have decided for now that it is much less stressful for all of us to give the feeds via the tube, although will probably try again with the bottle at some stage. It is quite likely that Jessica will go home with a feeding tube in situ but we are both now confident with giving feeds this way and no longer need supervision with this.

In the last couple of days, Jessica has been struggling to keep the feeds down and the doctors were suggesting quadrupling(!) the dose of Gaviscon which she has been taking – going from half a sachet to two sachets per feed. This seems like quite a jump so we have agreed to double the dose for now and see how she gets on whilst trying some more natural methods (keeping her upright, stopping more often during the feed to wind her etc.) to help her keep the Monogen down. So far this seems to be successful and we are hoping to avoid her having to go on any extra reflux medication unless we are sure that it is necessary. Currently she is on three-hourly feeds which works well during the day but we are hoping to increase the night-time feeds to four-hourly before Jessica goes home!

On a positive note though, Jessica has come off the ECG and has moved from high-care into the nursery – another step closer to being able to go home! She no longer needs to have her oxygen saturation levels continuously monitored which means we are able to wander around the ward with her a bit more. She is also doing well with her weight – down 30g yesterday, but staying static today so hopefully not retaining any more fluid.

We have had a few more visitors – Nanny, Auntie Twinny, Uncle Adrian, Auntie Julie, Phil and Becky have all been to see Jessica over the last couple of days and the ward was also visited this morning by a couple of stormtroopers, Captain Jack Sparrow and Batman. We’re still not quite sure what that was all about, but it was entertaining!

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2 comments:

  1. GClarkHellery31 December 2011 at 07:45

    Never thought I'd see a photo featuring Stormtroopers, Captain Jack & Batman. My geek senses are going into overdrive - is this a new group of super heroes intent on curing disease? lol.
    On a serious note, fabulous to hear that Jessica is continuing to make such good progress and she looks absolutely adorable :-)

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  2. Louise1 January 2012 at 22:56

    Lol, we're still not sure what prompted the visit from that particular mix of characters! It makes life that little bit more interesting though! x

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