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.

Monday, 21 May 2012

Off the Monogen


Jessica has had another good week.  She stopped the Monogen last Wednesday and so is now back on mummy milk and Infatrini once again and so far things seem to be going well with this.  She has been taking good amounts by bottle and so the feeding tube came out yesterday.  Her weight has stayed the same this week but hopefully once Jessica readjusts to the change in feed, she will be gaining good amounts of weight again.  She is also doing well with her solids and is starting to eat more.  Her oxygen saturation levels have been stable and overall everything seems to be going well at present.


Godmummy Gillian came to stay for a few days and Jessica enjoyed spending time with her.  Michael has been away for most of the past week working on an event and other than a couple of days back home at the end of this week, will be away until mid-June so Jessica will miss spending time with her daddy over the next couple of weeks.

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5 comments:

  1. Gail22 May 2012 at 21:57

    Oh louise she is doing remarkably well. I am so pleased that whilst on maternity leave I have been kept up to date via this blog and look forward to seeing you both again soon. Take care, much love, gail (chiro)

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  2. Sally Eyre23 May 2012 at 02:58

    Yea - go Jessica. Lovely photo with Gillian.
    Sally (Gillian's friend).

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  3. Louise28 May 2012 at 21:51

    Thank you! Gail - hope all is going well with you and your family and you are enjoying being on maternity leave, looking forward to seeing you soon x

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  4. Anonymous31 May 2012 at 22:26

    Hi there, just found your blog as I was searching for info on monogen. My lo Ben has been on monogen for 13 weeks for extreme chylothorax and we are now starting to wean him off it v slowly to EBM. Just wondered if you literally stopped or gradually increased bm / infatrini. Btw my lo has single ventricle and this was post Glenn op too. So glad to read your blog and see Jessica is doing well. Rachael

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    1. Louise31 May 2012 at 22:56

      We just stopped and went straight back to breastmilk and infatrini both times which our cardiologist was ok with although I know other cardiologists who advise gradual weaning. Jessica's chylothorax was less significant this time - the chest drain came out on day 3 which was much quicker than last time. Hope this helps and Ben does well coming off the Monogen

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