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 26 March 2013

A quiet week




Jessica is now much better although last week’s vomiting bug definitely knocked her for six and it was a good few days before her energy levels and appetite got back to more normal levels.  As a result, it has been quite a quiet week, with just spending most of her time at home having lots of cuddles and playing with her toys.  She has been very proud of herself as she has learnt a few new things this week – she has worked out how to stack the rings on the stacking ring pole and gives herself a little round of applause every time she gets one on there!  She has also added a few new signs to her repertoire – ‘thank you’ (our personal favourite!), ‘sleep’ and ‘cow’.  

 

Monday 18 March 2013

Home again

Jessica had a very good night's sleep and was almost back to her usual happy self this morning. She has managed to eat a little and drink something other than dioralyte and has had much more energy. Her sats have been in the high 70s which is still a little lower than usual for her but within acceptable limits and her temperature has been normal so we have been discharged and are now back home. Hopefully we can stay out of hospital for a while this time!


Sunday 17 March 2013

Back in Wexham Park

Jessica is back in Wexham Park Hospital as she has come down with a tummy bug and wasn't managing to keep fluids or her meds down at home.  We came in yesterday afternoon and since then Jessica has just been taking very frequent and very small amounts of dioralyte.  Thankfully she has managed to keep the dioralyte down so far and has not needed to have IV fluids but the team here are keeping a close eye on her fluid intake at the moment.  She has also been started on antibiotics as she also has an ear infection which has been giving her some quite high temperatures at times.


Jessica needed oxygen overnight to keep her sats above 76 but today is a little better and has only needed the occasional waft of oxygen.  She has been quite listless and sad today and so has been having lots of Mummy snuggles.  Hopefully she will start feeling better soon and back home again.

Monday 11 March 2013

Hospital visits




Jessica had a couple of hospital visits last week – the first was at King Edward VII Hospital for her eye check-up on Monday.  The team there have now decided that it is time to try glasses to see if this helps her squint so we have a prescription for glasses – we just need to go and get them now and then the challenge will be getting Jessica to wear them!  She also had a dental check-up on Monday and got a sticker for being a very good girl there.

 
On Tuesday, we had a check-up with the paediatrician at Wexham Park.  Jessica weighed in at 9660g (21lb 4oz) so is staying on the 25th centile for this and height was 76.7cm which keeps her on the 2nd centile for height (so far taking after Mummy rather than Daddy!).   She had been a little unwell in the couple of days before the appointment but her sats were 84 when checked by the paediatrician so all seemed well.  However, shortly after getting home, Jessica went a bit blue and when her sats were re-checked they had dropped to 65 so we went back in again.  Her sats did pick up again back into the 80s (still not quite sure what caused the drop) and we were back home after a few hours on the paediatric assessment unit with a diagnosis of a viral ear and throat infection.  Thankfully a couple of days of regular doses of Calpol and lots of snuggles seemed to do the trick and Jessica seems much better again this week.


Having helped Grandma celebrate her birthday a few weeks ago, it was Nanny’s turn for birthday celebrations at the weekend and Jessica enjoyed seeing her aunties and uncles and having lots of cuddles with them all.