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, 10 February 2012

Getting back on track

By Monday, Jessica’s weight had gone down to 4800g (10lb 9oz) and we were getting concerned that she wasn’t getting enough milk from either the breast or the bottle. Although we were reassured by the cardiac liaison nurse at Oxford who pointed out that restarting diuretics and last week’s cardiac catheter procedure would both have contributed to Jessica’s weight loss, we began to wonder if perhaps Jessica needed to have her nasogastric tube put back in. However after voicing this concern in Jessica’s hearing, suddenly she started feeding more enthusiastically – it seemed that she had decided that this was not something she wanted to happen!

She is still feeding with shields and having Infatrini by bottle as a top-up but has now started to regain weight again and was back up to 4950g (10lb 14oz) yesterday which we were very relieved about.

This week, Jessica has learned to grab her toes and pull her socks off so keeping her feet warm is going to become more of a challenge! Being able to reach her toes is also helping her with trying to roll. Although she did manage to roll a few weeks back, it seems that this was perhaps a bit of a fluke as she is only just managing to roll from her back onto her side when she is on the activity mat. She is sitting in the Bumbo much better now and is also able to go in the baby sling facing forward which she is much happier with – she likes to look around at everything. It is wonderful to watch her developing more and more as she discovers more about the world around her.


1 comment:

  1. Magical days... I wish I could reach to remove my socks as easily!

    ReplyDelete