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, 17 July 2012

Check-ups, teeth and social activity



Jessica had her check-up at Oxford on Friday and is doing very well.  The echocardiogram and ECG both show that her heart function is good and the team at Oxford have said that she looks as well as they have ever seen her which is great, and she doesn’t need another check-up until the end of August/beginning of September.   Whilst at Oxford, we also saw Dr Wilson, who performed the in-utero balloon atrial septostomy.  The last time we saw him was when the procedure was carried out and it really made our day to see him again to say thank you and for him to meet Jessica.  He seemed quite pleased that Jessica was doing so well – “a good outcome” were his exact words!  


The trip to Oxford ended up being quite a sociable one as we bumped into several people we knew – Nichola and baby Jack who we met last time Jessica was on Ocean Ward; Rachel, a friend from church whose son Jonah was having an operation; and Tori, one of the doctors at John Radcliffe.  As always, Jessica continues to be quite a sociable baby – over the last couple of weeks she has been to a baby shower for Tracy, one of Louise’s midwife friends, and out for a curry with some of our other friends, as well as her regular baby groups.


Developmentally, Jessica is coming on in leaps and bounds.  She is now sitting quite well without support for short periods and is quite adept at rolling about and making her way across the floor.  She hasn’t yet worked out how to crawl but has started trying to pull herself forward when on her front.  Her first tooth also came through last week followed by the second one a few days later.  The two top front teeth also feel like they aren’t that far away from making an appearance as well.


Weight gain continues to be steady with Jessica now weighing in at 6990g (15lb 6oz) and measuring 68.4cm in length, putting her just above the 2nd centile for weight and on the 9th centile for height.  She loves her food and sometimes we wonder where she manages to put it all – she must have hollow legs!


Thursday, 5 July 2012

Big decisions and Butlins


Jessica is ten months old tomorrow and is continuing to do well.  She is really gaining weight beautifully – now up to 6845g (15lb 1oz) and above the 2nd centile.  It has been quite a sociable week for her. She has spent a couple of days staying at Nanny’ house (with Mummy too) and went to visit Uncle Adrian and Auntie Julie.

 
She also had her first trip to Butlins earlier this week to spend time with Auntie Twinny, Uncle Matt, cousins Ebony and Erin and Auntie Maxine.  Despite the rain, we all had a great time and Jessica went swimming for the first time.  The water was a little on the chilly side but Jessica loved it – splashing around in her swim ring and enjoying bobbing up and down when the wave machine started.  She did get a little bit blue after about 15 minutes and we had to get her out and dry her off but her colour picked back up quite quickly once she had warmed up.  She also ehad great fun riding in the shopping basket going round the shop which was very funny!



It was a huge relief to us all yesterday when the decision of the Safe and Sustainable review was made and we heard that Southampton was one of the centres that was going to continue providing children’s cardiac surgery.  The care that we have received so far from the team there has been superb and we are so glad that Jessica’s future care will continue in a hospital that has become very familiar to us. Jessica has her next check-up at Oxford next week and hopefully all will be well with this.