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 13 May 2013

Scans, steps, sight tests, socialising and another significant anniversary

Two years ago today, we had a scan at Great Ormond Street Hospital where we were told that Jessica’s heart condition was so severe that she was unlikely to be suitable for surgery.  It was one of the worst days of our lives and yet with hindsight, there were positives, because the cardiologist we saw mentioned the in-utero surgery performed at Boston Children’s Hospital, almost as a throwaway comment.  That comment led to Jessica having her first surgery in-utero six weeks later in Oxford, the surgery that gave us a glimmer of hope and now here we are two years on with a beautiful little girl bringing lots of joy to our lives.


Today, we had another fetal cardiac scan, but thankfully a much more positive one than that one two years ago.   As far as the team at Oxford can tell at this stage, Pod’s heart appears to be completely normal which is a huge relief.  Jessica was a little confused though by going to Oxford and watching Mummy have a scan with Dr Manning instead of her!


Jessica has finally taken her first unsupported steps.  She managed a couple of steps about a week ago but very quickly got wise to the fact that Mummy stood her up and then moved away and now decides to sit down instead of trying to take any steps.  Clearly she still needs to gain a little more confidence before being ready to walk by herself but she definitely loves walking as much as possible whilst holding our hands.  She also loves song time and has now started to join in with some of the actions to her favourite songs which is lovely.


 
Jessica had a lovely time over the Bank Holiday weekend with a visit to Nanny’s, catching up with her aunties, uncles and cousins, and then going to a barbecue at our friend Nick’s and getting her first dip in the paddling pool which she loved.  Jessica has also been to another wedding at the weekend – our friends Matt and Jeanine were renewing their vows (we missed their wedding first time as it was in LA and took place just after Jessica’s arrival!)  She also helped Mummy celebrate her birthday last week as well so has had quite a busy time on the social front!
 
 
We were back at King Edward VII Hospital in Windsor last week for an eye check-up.  The glasses are helping reduce Jessica’s squint which is great news and the plan is to have another eye test in a couple of months and probably increase the strength of her glasses to help remove the squint entirely. 
 
 
We had a visit this afternoon from the community nurse.  Unfortunately the sats monitor that we have from the hospital is somewhat prehistoric and so decided to keel over so we didn’t get a sats reading.  We will have another visit later this week to check Jessica’s sats but as her colour has been good and she seems well, we are not too concerned.  She has lost a little weight though – down to 10.05kg (22lb 2oz) but is still between the 25th and 50th centile lines so again not a cause for concern at present – it may be due to the fact that she is walking more.


Thank you to everyone who attended our coffee morning last week for Little Hearts Matter – we raised £61.72.

No comments:

Post a Comment