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.

Sunday, 18 August 2013

On the news and out and about


Jessica has had a busy time recently being out and about. Earlier this month, she made a brief appearance on the BBC Six O’Clock news in a feature about Tesco trying to attract shoppers to their big stores. One of the things they are doing locally is providing a community space for local groups, and our Tiny Talk teacher will be running classes there which was why we were being featured on the news. If you didn’t get a brief glimpse of Jessica on the news, you can see the video clip again here on the BBC news website – we are onscreen for a couple of seconds about 30 seconds in.


Jessica has been enjoying catching up with various friends and family members and meeting others for the very first time. She thoroughly enjoyed attending cousin Meryl’s birthday afternoon tea (the chocolate éclairs went down very well!) and meeting her baby cousin Elisabetta for the first time. A huge thank you to Meryl for raising £335 as a result of her birthday tea which she has chosen to share between the Salvation Army Kids’ Club and Little Hearts Matter – thank you Meryl! 

 
 

We had a lovely day out at the Friends of PICU family fun day yesterday and enjoyed spending time with godmummy Katy. There were a few familiar faces there that we recognised from Jessica’s various stays on PICU and it was lovely to see Mark, the PICU ambulance driver who transported Jessica in the blue pod from Southampton to Oxford when she was three weeks old and we also saw Chris, one of the nurses who has looked after Jessica on PICU. Jessica took part in the fancy dress competition and her octopus costume won her first prize in the 0-2 age group category! It was also lovely to meet fellow heart mummy Freya and beautiful heart baby Erin whose journey we have been following for some time and who thankfully is doing very well following her second stage surgery.




We are missing Daddy at the moment as he is away working on an event in Cologne but Auntie Twinny and cousins Ebony and Erin have come to stay while he is away and Jessica is having a lovely time with her cousins. She managed to say ‘Ebony’ this afternoon which we were very impressed by and has been amusing her cousins by showing them her repertoire of animal noises – our current favourite is her little lion roar which is very cute!


Three of her canine teeth have now appeared and the fourth looks pretty imminent – apart from wanting to chew on all her toys, Jessica seems to be coping well with the current round of teething and has generally carried on being her usual happy self throughout with only a few grumpy moments when her teeth are clearly bothering her.

Thursday, 1 August 2013

Check-up, classes and canines

Jessica had a check-up with the community nurse yesterday and her weight is about the same as it was when she was weighed at Oxford last month but as that was quite a big gain and she is still following the 25th centile line on the weight chart, this is not a cause for concern. Her sats are generally staying at about 80 at the moment which is fine. 
 


We did have one blue episode recently as Jessica had a swim in the outdoor pool at a church open house and whilst on the whole she was fine, after about ten minutes, she did start going a little blue. As it was on one of the cooler days of the summer so far, she did get a little cold in between getting out and getting dressed and so was much more cyanosed that we have seen her for quite some time but thankfully she pinked up again quite quickly once she was warm and dry.
 


Jessica has now been to a couple of Tiny Talk toddler signing classes now – although she is not quite the youngest toddler there, she is definitely the smallest and we did wonder if she would be a bit overwhelmed by a bigger classes and a lot of very active bigger toddlers but she loved it. She visibly gained in confidence between the two classes and is proving to be a little performer – this morning, she decided that she wanted to stand in the middle of the circle and demonstrate all the actions for one of the songs (and did so beautifully!) It is also interesting to see how she watches the other children and tries to copy them – for instance, when they are jumping about. She hasn’t yet worked out how to jump but she does lots of quick stepping on the spot instead and no doubt will figure it out soon! Signing-wise she is coming on in leaps and bounds – it seems like she learns a new one almost every day now. Our current favourite though is ‘sleep’ – particularly as it is always accompanied by a snoring noise!
 
 
 
After several months of respite from teething, the four canine teeth are starting to make their way through (Jessica always seems to do teething in bulk!) and the first of these has appeared today. Thankfully this hasn’t seemed to bother her too much – she has moments of being a bit grumpy about it and wanting to chew on everything but on the whole she has continued to be her usual happy self. She had a lovely weekend catching up with Nanny and various aunties, uncles and cousins at her cousin Wayne’s wedding recently.
 
 
Whilst we still don’t think she is particularly aware of the fact that she will be having a sibling before long, she did point to Mummy’s bump for the first time and sign ‘baby’. She does love seeing babies at various groups and is quite fascinated by them so hopefully this is a good sign. Pod is growing well and is now at the same gestation that Jessica was when she had her very first surgery in-utero. It is amazing to think that that was over two years ago now – looking at our happy active girl today, it is hard to believe she has been through so much but what a huge blessing it is to be able to watch her grow and develop and enjoy so many precious moments with her!