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.

Friday, 11 October 2013

A trip to A&E

We had a little trip to Wexham Park Hospital today after Jessica tripped over in the park and fell flat on her face, resulting in a nasty looking cut on the inside of her lip.  One of the things we worry about with something like this is the risk of Jessica getting endocarditis (an infection in her heart) and so we called the cardiac liaison nurse at Oxford to check whether we should be concerned.  She felt that it would be best to get it checked out as it might also need stitches.  Although we have open access to the children’s ward, the team there advised us to go to A&E instead and so our little trip to the park turned into a trip to A&E!  Thankfully, the cut doesn’t appear to require stitches and the doctors don’t feel that Jessica needs antibiotics although have advised us to go back if Jessica does show any sign of fever or infection.  In the meantime, she has a very bruised little lip but other than the initial upset when she first fell over, doesn’t appear too bothered, thankfully.  Hopefully it will heal well without any further concerns.



Other than our trip to A&E, life has been fairly quiet over the last week or so as we await Pod’s imminent arrival and make the most of still being able to give Jessica lots of one-to-one attention before she becomes a big sister.  She has been going to all her usual groups and enjoying herself, continuing to be a very happy little girl as always!


Thursday, 3 October 2013

Two year review

Jessica had her two year review with the health visitors today and they were very happy with her progress. Although some of her developmental milestones were reached a little later than usual, she seems to have caught up very well with other children of her age and is doing pretty much everything that is expected of her which is very good.   Her speaking vocabulary is slightly less than expected but as she is learning new words rapidly and her hearing appears to be absolutely fine, this is not a cause for concern. Her signing vocabulary is quite extensive now anyway and she certainly has no problem communicating with us using a combination of speaking and signing. One of her new words since our last update is ‘mummy’ (instead of her usual ‘mum-‘mum’) which is so wonderful to hear. ‘Daddy’ has been attempted a couple of times but she still prefers ‘Da!’ at the moment.



Jessica has been weighed today and is gaining weight beautifully – up to 11.8kg today (25lb 15oz) which is very encouraging particularly with her having a little bit of a picky eating phase lately. We have learned that these phases are usually very short-lived anyway particularly if we don’t make any fuss about them.


Jessica took another little step in showing what a big girl she is becoming when she used the potty for the very first time the other day. She isn’t yet at the stage of telling us regularly when she needs a nappy change (although has done so once or twice) so we are not trying to actively potty-train just yet (particularly with Pod’s arrival being fairly imminent!) but we have just been sitting her on it for a moment before her bath-time just to get her used to it.  She also showed what a big girl she is when she recently had a haircut and sat still on the stool all by herself without having to be held on Mummy's lap.


Auntie Maxine came to stay for a couple of days last week and Jessica loved spending time with her. We also had a day trip to Liverpool to keep Daddy company as he had to set up some equipment for an event there and Jessica enjoyed having a walk around Albert Dock with Mummy while Daddy was busy working. She loves to walk as much as possible now and has started to object to being put in her pushchair. She is certainly a very active toddler now and although she does occasionally get a little breathless after a while, she is generally coping very well with being constantly on the move.

Friday, 20 September 2013

Two years and two weeks

 
Can’t believe that two weeks have passed since Jessica’s birthday – time goes so fast! We had a bigger birthday party for her at Grandma and Grandad’s house the day after her birthday with family and Jessica had a lovely time with her aunties, uncles, godparents, cousins and grandparents and particularly enjoyed the bouncy castle. She also had a lovely time the day after her party at another party – this time for our friend’s baby’s naming day. Three parties in three days!




We are enjoying being back at our various groups now that the summer break is over and Jessica is really enjoying the toddler signing class. In the last two weeks, her speaking vocabulary has been increasingly rapidly – we had four new words today: ‘towel’, ‘four’, ‘five’ and ‘six’ and Jessica has also started learning how to count (or at least when asked ‘what comes after one?’ she says ‘two’ and ‘what comes after two’, ‘three’ – clever girl!).



Other new skills have involved technology – after making the mistake of leaving the Sonos controller unlocked and in Jessica’s cot at bedtime the other day, we suddenly got deafened by very loud music downstairs and headed upstairs to find a very awake, very happy little girl enjoying playing with her shiny ‘toy’. She also managed to send two tweets on Daddy’s twitter account using the same controller (Mummy didn’t even know that was possible so Jessica already knows more about some of our household gadgets than Mummy does!) so has made her first steps on the social networking front!


Jessica has definitely started exploring the boundaries a little more since turning two – the word ‘no’ seems a little less effective than it was and we are having to toddler-proof various shelves and drawers at a rapid rate as she quite enjoys climbing on the sofa and pulling DVDs off the shelf (and can now reach the next shelf up too!) – all done with her usual big cheeky grin!


Jessica still seems quite unaware that she will be getting a little sibling before very long although loves playing with her dollies in their pram and is very definite about one thing – babies cry a lot. Every time she goes to check on her dollies, she starts making baby crying noises – well at least she will be prepared for that part of a new baby in the house!



Friday, 6 September 2013

Happy 2nd Birthday, Jessica!



Today is Jessica's second birthday! She has had such a lovely day today and has thoroughly enjoyed herself opening lots of lovely cards and presents, playing with her new toys, seeing her birthday card on CBeebies, eating cake and having lots of people around to wish her a happy birthday and spend time with her. We have had visits from Grandma and Grandad and Great-Auntie Marlene. In the afternoon, Jessica had a little birthday party with her friend Daniel from her baby signing group and godmummy Katy has come to stay this evening and help prepare for Jessica's birthday party tomorrow.  Here are a few photos of Jessica enjoying her birthday:









Today is also the second anniversary of Jessica's first open-heart surgery when she was just eight hours old - one of several 'heart days' in the calendar.  Jessica has been through so much in her first two years (although thankfully the past year has been much less eventful than the first year was!) but we are so blessed that she has come so far and done so very well. She brings so much joy to our lives and we thank God every day for her. Happy 2nd birthday beautiful Jessica Charlotte - Mummy and Daddy love you very, very much.

Tuesday, 3 September 2013

Appointments, postboxes, photos and birthday preparations

We have had a couple of appointments this week - Jessica had a trip to the dentist on Monday and was very good at sitting in the chair and letting the dentist look at her teeth. The fourth canine is through so she has sixteen teeth in total, all of which look healthy which is good. This morning's appointment was with the paediatrician who was very happy with how Jessica is getting on. She now weighs 10.86kg (23lb 14oz) and is continuing to follow the 25th centile line nicely. Height-wise she seems to be taking after Mummy - she is now 80.6cm tall and is just under the 9th centile for height. Sats were also good today at 85% and we don't need to see the paediatrician again now until April although will continue to have monthly visits from the community nurse and a heart check-up at the end of November.




Jessica's speaking vocabulary is really starting to increase now - we are getting a new word almost every day now - over the last few days we have added 'shoes', 'cheese' and 'food' to the list. She is also starting to copy things that we do - one of our discipline techniques is the three chances technique - it is quite funny to hear Jessica saying 'no' and holding up her finger and saying 'one' although we have to try not to let her see us laughing!


 Daddy got to see Jessica briefly on his birthday as he only got back from Cologne that evening, The next day, we were off to Sunderland for the bank holiday weekend as Daddy was working on the family fun day at the Nissan factory - Jessica quite enjoyed helping him test the racing game. We ticked off a few more gold postboxes on our way back home and have now visited all of the Olympic ones other than the Isle of Man and Sark and are halfway through the Paralympic ones.


Jessica did her first walk into the village and back last week - it is only a few minutes away but seemed a fair distance for her little legs. She absolutely loved being able to walk there with Mummy though (who found that Jessica's walking pace is not too different from hers these days!) and has enjoyed a couple more opportunities to have a longer walk when out and about.



We have now got the photos through from the Charlie Jones' Foundation Book of Love photo shoot and are absolutely delighted with them, thank you so much to Broomhill Photography for such fabulous photos. We have shared a few of our favourites below.










This week is looking to be quite a busy one as we are preparing for Jessica's second birthday on Friday. We can't quite believe that our baby girl is about to turn two already - how time has flown but what a wonderful blessing it has been to watch her grow from a tiny baby to the beautiful happy toddler she is today.



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!