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, 1 September 2014

CBeebies Land, challenges and community nurse checks



We’ve had a lovely few days away as a family recently and have ticked a few more of the Paralympic gold postboxes off the list now – bringing the total up to 33 Paralympic gold postboxes.  We were originally hoping to finish off the Olympic ones with a trip to the Isle of Man but unfortunately couldn’t get a ferry crossing for the dates we were going away so will have to do that one another time.  Jessica and Sophie have been enjoying their trip around the country – this time taking us to Norfolk, Lincoln, Nottinghamshire and the Peak District and around Birmingham.  


Whilst we were away hunting the gold postboxes, we also took a trip to Alton Towers and Jessica and Sophie particularly enjoyed their day at CBeebiesLand.  We got to see Mike the Knight, take a boat ride and see the In the Night Garden characters, ride in Postman Pat’s van and visit Mr Bloom’s Allotment and had a fabulous day out.



Our other challenge for the summer has now come to an end as we have now found all fifty of the book benches around London.  We’ve really enjoyed exploring various areas of the city whilst doing this although our final trail around Bloomsbury was an unexpectedly emotional one as it took us around the vicinity of Great Ormond Street Hospital.  It brought back a flood of memories of that day where we were told that Jessica’s chances of survival were incredibly low as two of the book benches were situated very close to places where we stopped and made phone calls and generally tried to get to grips with the devastating news we received that day.  The photo below is the bench where we stopped to call close family and friends – what a blessing it was to be there with Jessica more than three years on, knowing that we were given the miracle that we prayed for that day.  Thank you God for answering our prayers that day – we know how very, very lucky we are.





It is amazing to think that in less than a week, Jessica will be three years old.  That time has gone by so very fast and it is wonderful to see how Jessica has grown and developed and become such a wonderfully happy chatty little girl.  She had her check-up from the community nurse today and is continuing to do really well  - her sats were in the mid 80s again which is very good for her, and she has had a little growth spurt in the last couple of weeks and now weighs in at 13.25kg.


 
It has also been a blessing to have recently met another heart family who live in our village and to be able to get together with our children and share stories and concerns.  The community of other heart families that we have got to know during this journey and the love and support of all our other friends and family has really been what has helped keep us going at times – thank you all for being there for us along the way.

2 comments:

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    1. They needed fixing - always seems to happen when we go away for a few days! All fixed now though :-)

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