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.
Jessica had another check-up at Oxford on Friday and the team there were happy with how she is getting on. Her echo showed that her heart function is good and although they couldn’t visualise her lung arteries clearly, her general well-being and saturation levels (which were between 78% and 80%) indicate that there should still be good blood flow through these. Her weight is now up to 10.8kg (23lb 12oz) so she is continuing to do well with her weight gain too.
Jessica’s glasses have now been fixed so she is back to wearing these (her squint was much more noticeable during the two weeks she was without them). She is getting very confident with her walking now and there is no stopping her – she wants to explore everything and anything now and it is lovely to watch her (if a little exhausting at times trying to keep up!)
We have had a lovely sociable weekend celebrating our friends Sarah and Mark's wedding which Jessica enjoyed very much, particularly spending time with her godparents Bryan and Nicki and ‘helping’ them with a game of croquet in the afternoon!
Our check-ups at Oxford have spaced out a little further now as Jessica is doing so well and so her next check-up isn’t due until towards the end of November. We have also had a second heart scan for Pod which seemed normal and all being well, this will be the last scan needed so all is going well with Jessica’s baby brother or sister too.
We have just returned from having ten days away, firstly
travelling to Southampton and Bristol to visit friends, then spending five days
at Butlins in Minehead followed by a couple of days in Cornwall for a couple of
days before coming home via Poole and Shaftesbury where we visited some more
friends. Unfortunately she has had to manage without her glasses for the last couple of weeks as Mummy accidentally broke the frames and we are still waiting for the replacement frames to arrive so they can be mended.
Jessica has been thoroughly enjoying herself – particularly the
few days we spent at Butlins.She got to
meet Angelina Ballerina and Pingu (and was a bit upset at having to say goodbye
to them after having her photo taken!), has been enjoying the various rides in
Bob The Builder’s Yard and has had fun exploring the soft play area and the
sensory room in the nursery.She also enjoyed
a little dance with Daddy at the tots’ disco and the parent and toddler
swimming sessions.
Whilst travelling around the country, Jessica has also
visited a few more gold postboxes taking the total of Olympic ones visited to
46 (out of 64) and Paralympic ones to 13 (out of 46).
The highlight of our holiday was our last day when Jessica
suddenly got the confidence to start walking on her own.She has been doing a couple of very wobbly
steps here and there for a while now but clearly spending lots of time walking
whilst holding Mummy or Daddy’s hand during our holiday helped her confidence
because she is now taking quite a few steps on her own.She is still a bit wobbly on her feet but is
so very proud of herself for being able to walk by herself and it is a delight
to watch her.
We had a visit from our community nurse just before our
holiday and Jessica has regained the weight she lost last month and is back up
to 10.24kg (22lb 8.5oz).Her sats are
staying in the low 80s so all seems to be well at present.She is due to have another check-up at Oxford
at the end of the month and hopefully this will continue to show that her heart
is functioning well.
May has been a lovely sociable month for Jessica with lots
of visits from and to friends and family.She met our friends Rob and Elisa who were visiting from the USA and
thoroughly enjoyed her playdate with their daughter Tori.She attended a dedication service for our
friends Phil and Tany’s daughter Amy and enjoyed having various family members
coming to stay towards the end of May including Auntie Maxine, Auntie Twinny
and cousins Ebony and Erin.Jessica
seems to be in her element when she is being sociable and has been thoroughly
enjoying herself.She is a very
affectionate little girl and so everyone has been getting lots of cuddles and
kisses from her (as have all her favourite toys which is quite delightful!)
Whilst she did take her first unsupported steps early on in
May, she is still not quite confident enough yet to do so on a regular basis
although we have seen her take a couple of steps here and there.She is chatting and signing much more though –
her signing vocabulary is much more advanced than her speech but her favourite
word with both seems to be “duck”.She
was quite delighted this morning when we had a photoshoot at the Heath in
Petersfield and got to see all the ducks by the pond!The photoshoot was for the ‘Book of Love’
which is a project organised by the Charlie Jones Foundation to help raise
money for Little Hearts Matter.We are
looking forward to seeing the results of this morning’s photoshoot.The book is due to be printed towards the end
of the year and we will let you know when it is available!
The nice weather has also seen a restart of our ‘GoldPostbox Challenge’ – trying to visit all the golden postboxes painted for Team
GB gold medallists.We have now visited
41 out of the 59 postboxes.
