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.

Thursday, 29 May 2014

A busy couple of weeks




Jessica had her monthly check-up with the community nurse at the end of last week and her sats were up to 82 which is the best they’ve been for a little while.  Her weight was a little down from the previous weigh-in at 12.4kg (27lb 4.5oz) but she’s still following her centile line nicely.


We are now at the stage of having to be very careful about what we say as she is definitely starting to repeat lots of things now!  Watching her playing with her dolls and saying things like “Eat dinner, have cake… …then no cake!”, “don’t touch, be careful!”, “hello Sophie, nice to see you!” and my personal favourite: standing at the bottom of the stairs and calling “Get up Michael!”  We’re definitely starting to see all our little pet phrases coming right back at us!


We enjoyed spending time with other members of our church family last weekend when we went away on the church fellowship weekend.  Jessica and Sophie both enjoyed spending time with everyone there and it was lovely for us to spend time away as a family.  We took a little detour on the way home and visited one of the Paralympic gold postboxes in Oxford which brings the total of these up to 24 (out of 46)


Nanny came to stay recently and looked after Jessica whilst Mummy and Daddy took part in the concert at church which helped to raise £112.60 for Friends of PICU.  It was lovely spending a few days with Nanny and then visiting family when we went to stay with Nanny for a few days when she went home again.


We are looking forward to having our first family holiday abroad next month – going by ferry and car to the south of France to visit friends there.  We had to do quite a bit of phoning around though to arrange travel insurance for Jessica – we found the travel information leaflet and list of possible insurance companies from Little Hearts Matter was very helpful with this.  The lady we spoke to at the insurance company we finally went with happened to also be a heart mum of an 18 year old who was treated at Southampton by one of the consultants who we knew from Jessica’s time there!

  
Jessica’s story has recently been mentioned in the Children’s Hospital Network Annual Review booklet and we received a few copies of this in the post.  Mummy also wrote a guest blogpost last week for the Little Hearts Matter blog which shared some of our experience of how Little Hearts Matter have helped us as a family since Jessica’s diagnosis. 

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