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.

Tuesday, 11 March 2014

Celebrations




 
Over the last weekend, we have had been enjoying a couple of celebrations.  Friends of PICU, the charity which supports children on the paediatric intensive care unit in Southampton and their families celebrated reaching the million pound milestone in their fundraising with a party which Jessica enjoyed very much.  It was particularly lovely to see Willow, who is a similar age to Jessica and who we last saw as a baby in hospital after her Glenn procedure, and her family.  What a joy to see two little heart girls together again and doing so well.


The following day we were visiting Nanny and helping her celebrate her birthday.  This also meant seeing a lot of other family members who were dropping in to wish Nanny a very happy birthday and Jessica thoroughly enjoyed seeing her cousins, aunties and uncles.  Jessica also got to see her cousins on Daddy’s side of the family as they made a brief trip over from Luxembourg and it was lovely to see her and the twins playing so nicely together.


Jessica had a trip to the dentist last week and got a sticker for being a very good girl and letting the dentist check her teeth (getting her to roar like a lion worked quite well for getting her to open her mouth nice and wide!)  Dental care is really important in children with CHD because of the potential risk of endocarditis with tooth decay or gum disease and it is always a relief to be told that Jessica’s teeth look clean and healthy!


With Sophie getting bigger, we are having a time of transitions.  Jessica’s highchair has now been put away and so she sits at the table in a booster seat and she loves this.  We have also now finally got the seat to convert our buggy into a double and Jessica has been enjoying riding with Sophie in the buggy (it will be nice when Sophie can move into the pushchair seat and then they will be able to face each other).  Jessica has also had a little taste of sleeping in a ‘big girl bed’ when we were away for the weekend as we have now moved her from a travel cot into a toddler readybed so that Sophie can use the travel cot.