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, 5 December 2012

A couple of firsts




The past weekend has seen a couple of firsts.  Jessica attended her first Christmas party on Sunday and got to see Father Christmas (although not for the first time as he visited Southampton General Hospital a couple of times last year!). The Christmas party was organised by the Alexander Devine Children’s Hospice service for children with life-threatening and life-limiting conditions (our lovely community nurse Lucy is an Alexander’s nurse) and the theme was Charlie and the Chocolate Factory.  There were actors performing a very short version of the story and keeping the children entertained throughout plus lots of activities.  Jessica loved the soft play and sensory areas  and the ball pond.  She had such a fabulous time – a huge thank you to the Alexander Devine Children’s Hospice service for organising such a wonderful party.   



Jessica also stood up for the first time on Sunday (which prompted Daddy to lower the cot again!) and since then has been practising this new skill by pulling herself up on tables, sofas and her little bookcase.  The only problem with this is that whilst she has worked out how to stand, she is not quite sure how to get back down again and so gets a bit upset at being ‘stuck’!



We’ve been waiting for more teeth for quite some time and thought the top front teeth (the next ones that usually come through after the bottom two) were about to make an appearance.  It was quite a surprise when we realised that one of her top molars has come through – we were expecting a few more teeth before one of those appeared but Jessica clearly likes to do things her own way.  It does explain why we’ve had quite so many disturbed nights with teething recently though…!

 
We had another appointment at King Edward VII Hospital for an eye check-up.  Jessica’s squint still alternates between her left and right eyes and we have been told that this is a positive thing as it means her vision is not particularly impaired as a result of the squint.  The plan at the moment is to keep an eye on it (no pun intended), and go back in three months with the aim of trying glasses in about six months’ time to see if this helps correct it.


As always, Jessica continues to be a little bundle of joy and is really starting to chat much more now.  It is lovely to see her sitting playing with her toys chatting away to herself and she now picks up her teddy bears (her favourite toys) and says “Aaahhhh” whilst hugging them which is very cute.  She also says “bear”, “baby”, “na-ma” (Grandma) and we have also had a “men” at the end of bedtime prayers!



We have a couple more Christmas parties to attend in the next couple of weeks and a check-up with the paediatrician at Wexham Park so will update again before Christmas.


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