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 25 July 2014

A busy few weeks

We have been having a lovely time over the last few weeks, making the most of the sunshine and embarking on a new challenge now that we have visited most of the gold post boxes within a reasonable drive of home.  Books about Town features 50 different bench sculptures in the shape of an open book (with a 51st bench due to be added at the end of August) which have been placed all around London and we have been enjoying getting out and about and trying to find as many as possible.  There are four different trails on the website and so far we have completed the City trail and visited most of the books on the Greenwich trail.  We are aiming to visit them all over the summer and Jessica and Sophie have been enjoying having their photos taken with them.  Jessica particularly loves being able to go on long walks (she really copes quite well with all the walking although we do always have the double buggy with us in case she gets tired) and particularly loved being able to run about in Greenwich Park.


Jessica had a check-up with the community nurse a couple of weeks ago and her sats were 85% which is the best they have been for quite a while.  She is continuing to gain weight beautifully and staying on the 25th centile line – now weighing in at 12.63kg (27lb 12.5oz).   


We have been starting to look at pre-schools as Jessica will get her funded hours from January.  There are three options within a few minutes’ walk of our house and Jessica has enjoyed all her visits to these.  She painted a picture of a fish at one of them - her first painting where we could actually recognise what it was that she was painting which was a lovely little milestone.  We weren’t quite so impressed with that particular nursery though – the sign asking us to “pleese” press the buzzer to come in didn’t make for a very favourable first impression!  The other two pre-schools look much more promising though!


In the meantime though, we’re continuing to enjoy all our regular groups although most of them have now stopped for the summer.  Jessica recently did her first ever sponsored event at Tiny Talk, her toddler signing class, and did some signing to help fundraise for The Rainbow Trust and also received her fifty signs certificate – well done Jessica!  She has become very chatty this days and loves singing to herself, making up songs about whatever she happens to be doing at the time (just like Mummy does!).  She is just about getting there with recognising her colours now, knows the alphabet song and has started being able to recognise some letters and can now count to forty by herself (and is nearly there with getting to fifty).


Now that Sophie is crawling (and pulled herself up to standing for the first time today), she is much more able to get to whatever toys she wants rather than the ones Jessica is happy for her to play with and so sibling life is not quite as harmonious as it once was.  However, there are definitely moments when they play beautifully together which are a joy to watch, and moments when they both want the same toy or when Jessica gets annoyed because her sister is getting in her way.  Fun times!



Socially we’ve been busy – attending cousin Gracie-Mae’s christening and our friends Neil and Clare’s wedding as well as spending a few days visiting Nanny and going to see Auntie Maxine who was in hospital (thankfully she is much better now and back home).  We have had a day out at Legoland where we bumped into godmummy Katy, had a fundraising coffee morning at Christ Church and raised just over £60 for Friends of PICU, enjoyed a visit from Mummy’s friends Lisa and Ashley and spent lots of time in the garden just enjoying the nice weather.  On the whole, Jessica has coped very well with the heat and we make sure she keeps well hydrated.



Jessica is due to have her cardiac check-up towards the end of next month and also has her eye check-up next month as well – we will keep you posted with how she gets on with these.