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.

Wednesday 1 February 2012

From Monogen to mummy millk

After six weeks of being on Monogen, Jessica was finally able to have some mummy milk on Sunday. Getting her back on to the breast has been quite a challenge though and so we have been trying lots of skin-to-skin cuddles and gentle encouragement and eventually Jessica was able to latch with the aid of a nipple shield – clearly she has become used to a silicon teat during the six weeks of Monogen. It is great that Jessica is finally breastfeeding again but the nipple shield means that she will have to work harder to get the milk and so is more likely to tire and not get enough milk. Louise has also been using a nursing supplementer which means that Jessica can also have a top-up of expressed milk via a tube whilst she is latched to the breast. Her feeding tube has also been removed.

We are back on Ocean Ward at the moment ready for Jessica’s cardiac catheter investigation tomorrow. She has had a chest X-ray and echocardiogram in preparation for this and there are no signs at present that there is any leakage from the chylothorax so hopefully she will be able to continue having mummy milk. Her weight has gone down a little to 4950g (10lb 14oz) which isn’t too surprising given the change in feeding – hopefully she will start to gain weight again soon.

Nanny ended up staying another week to help out and have lots of Jessica cuddles whilst Michael was away working on an event in Cannes. We were a little worried that he wouldn’t be able to get back in time for this latest trip into hospital as his flight home was delayed due to snow but thankfully he managed to get back home late yesterday evening.

Otherwise, all is going well with Jessica. She continues to be a very smiley, happy little girl and we are hoping that the findings of tomorrow’s cardiac catheter investigation will be encouraging.

2 comments:

  1. Yea - still thinking of you guys often. Hope everything goes well. Sally (Gillian's friend)

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  2. Thanks Sally - all went well and the findings seem encouraging for the next stage.

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