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.

Tuesday 1 May 2012

Another good couple of days



Jessica is continuing to do well and has been very smiley and happy over the last couple of days.  She has been taking a little more Monogen by bottle and then decided to pull out her feeding tube this evening, little pickle!  As she has been a little better at taking the bottle, the doctors have agreed to see how she gets on without the tube and replace the tube in the morning if Jessica doesn’t take a reasonable amount by bottle overnight.  She has been doing really well at taking solids – we are now on three meals a day and she is eating reasonable amounts, even managing to finish her little bowl of mashed potato and baked beans this evening. Our friend Nick popped in to see Jessica this afternoon and brought some more lovely weaning pots which was fabulous (thank you, Nick!) particularly as the hospital MCT-diet menu is very limited.


Her wound dressing has been removed and the wound is looking good so Jessica was able to have a bath for the first time since her op this evening.  She was weighed this morning and is now 5450g so has finally reached 12lb.  Considering that she first hit 11lb at the end of January, this feels like quite an achievement!  



The plan over the next few days is to continuing weaning down on the oramorph and the diuretics and hopefully then we will be able to go home.


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4 comments:

  1. Unknown1 May 2012 at 22:42

    How wonderful - I'm so pleased to see that Jessica is continuing to improve and do so well.

    Neil and Sandra xx

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  2. elizabethinchurch2 May 2012 at 02:01

    Jessica is looking so good... She clearly has her own ideas about how long she is prepared to have tubes cramping her style. She must feel it's time to be going home now.

    ReplyDelete
  3. Michelle Sanders2 May 2012 at 09:05

    Way to go little one :) x

    ReplyDelete
  4. Mark Thackeray2 May 2012 at 11:37

    Hi Michael, Louise and Jessica,

    Glad everything is going well, lots of love,

    Mark & Ria xx

    ReplyDelete

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