CHD awareness, check-ups and celebrations

It’s been another busy month for us all with lots of fun days out as well as fun indoors now that the weather is getting colder.  We have had trips to various parks collecting autumn leaves and feeding ducks, a day trip to London to see the poppies at the Tower of London, fancy dress play sessions over half term and fun with painting and printing with autumn leaves. 

Jessica’s latest check-up with the community nurse was encouraging – she is gaining weight well and staying above the 25th centile which is great and her sats are still up in the mid 80s which is really good for Jessica.    We have now registered Jessica’s place at preschool and she will be starting in January and going for two mornings a week.  She looks very grown-up in her preschool jumper!

Jessica’s story has been featured in the Big Tick – a campaign by the charity Tiny Tickers to raise awareness of early detection of congenital heart defects by providing expectant mums with information so they know what questions to ask at the 20 week scan.  If you are expecting a baby or know someone who is, pop along to their website and request a card – we were very lucky that Jessica’s heart condition was picked up at her 20 week scan as we have no doubt that she would not be here today if that hadn’t been the case.

Jessica’s photo was also featured in this month’s issue of ‘Let’s Knit’ magazine as Little Hearts Matter are their featured charity of the month.

We celebrated Sophie’s first birthday last week and Jessica enjoyed seeing friends and family and playing with her cousins at Sophie’s birthday party.  She also thoroughly enjoyed helping Sophie to open her presents and cards (or more accurately, opening most of them for her!) and was quite excited at having new toys to play with (not sure if she thinks most of them are for her but thankfully Sophie is quite happy to share!)  Auntie Maxine came to stay for a few days after Sophie’s party and then we had a trip down to visit family again when Auntie Maxine went home so both Jessica and Sophie have had lots of time catching up with family lately, which has been lovely.

 

We had one final trip to Legoland yesterday as it was the last day before it closed for the winter and Jessica enjoyed seeing the pirate show (her favourite part of Legoland)and going on all the rides in spite of the rain (which just meant having lots of puddles to splash in which is always fun!)  

Another good check-up

Jessica had her paediatric check-up at Wexham Park this morning and all was well.  Her sats were great again – staying around 85 at the moment which is really good for Jessica – and the team are happy not to see her in the paediatric clinic again until April next year which is good, although we do have a cardiac clinic appointment booked for late January. 

Jessica was a little unwell with a sick bug over the weekend but thankfully this was short-lived and we didn’t repeat the experience of having to go to hospital as was the case last time she had a sick bug.  Sadly it meant though that she missed going to a friend’s birthday party and stayed at home with Daddy whilst Mummy did another fundraising coffee morning at church for Little Hearts Matter (thank you to all who came and helped us to raise £60).

Other than the little blip of being unwell though, we’ve had a nice month on the whole – Jessica has enjoyed another day out at Legoland, going blackberry picking, helping Mummy bake scones and biscuits and lots of time just enjoying the nice weather we’ve been having recently and making the most of the sunshine before autumn takes hold.  

We’ve entered Jessica and Sophie to be Little Tikes Tiny Testers – if you can spare a minute to visit the Little Tikes website and vote for them both (voting closes on 1st October at midday), that would be fabulous.  You can vote for Jessica here and for Sophie here.

Happy 3rd birthday Jessica!

Our little miracle has been celebrating her third birthday today.  We have had such a lovely day at home with visits from godmummy Katy, Great-Auntie Marls, cousins Meryl and Elisabetta, Nanny, Grandma, Grandad, Auntie Fizz, Auntie Loraynne and Uncle Pete.  Jessica was very excited to see her birthday card being read out on CBeebies this morning and loved her birthday cake in the shape of Mr Tumble’s spotty bag.  She has had lots of lovely presents including a camera from Mummy and Daddy (we have had lots of interesting photos – mostly of people’s knees and the sofa!), a doll’s pushchair from Nanny and a bicycle from Grandma and Grandad.  Sophie has also enjoyed playing with Jessica’s new presents too!

  

It has been a lovely day and we feel very blessed to have been able to celebrate Jessica’s third birthday. It is amazing to think that this time three years ago she was having her very first open-heart surgery and everything was very uncertain and very scary – we are so very thankful for all the wonderful medical staff who have looked after Jessica since that day (and before she was born too!) and have helped her get her today.  What a blessing it is to watch our beautiful little girl running around and having such a wonderful time on her birthday.  Thank you too to all our wonderful friends and family and everyone who has been there for us on our journey.

Jessica has also featured in the Little Hearts Matter newsletter which arrived on our doormat this morning – with Michael’s reflections on being a heart dad being one of the featured articles. 

Here are a few photos of Jessica enjoying her birthday:

Happy birthday beautiful little Jessica.  Mummy and Daddy love you so very much and are so very proud of you – you bring us so much joy and we thank God every day for you.

CBeebies Land, challenges and community nurse checks

We’ve had a lovely few days away as a family recently and have ticked a few more of the Paralympic gold postboxes off the list now – bringing the total up to 33 Paralympic gold postboxes.  We were originally hoping to finish off the Olympic ones with a trip to the Isle of Man but unfortunately couldn’t get a ferry crossing for the dates we were going away so will have to do that one another time.  Jessica and Sophie have been enjoying their trip around the country – this time taking us to Norfolk, Lincoln, Nottinghamshire and the Peak District and around Birmingham.  

Whilst we were away hunting the gold postboxes, we also took a trip to Alton Towers and Jessica and Sophie particularly enjoyed their day at CBeebiesLand.  We got to see Mike the Knight, take a boat ride and see the In the Night Garden characters, ride in Postman Pat’s van and visit Mr Bloom’s Allotment and had a fabulous day out.

Our other challenge for the summer has now come to an end as we have now found all fifty of the book benches around London.  We’ve really enjoyed exploring various areas of the city whilst doing this although our final trail around Bloomsbury was an unexpectedly emotional one as it took us around the vicinity of Great Ormond Street Hospital.  It brought back a flood of memories of that day where we were told that Jessica’s chances of survival were incredibly low as two of the book benches were situated very close to places where we stopped and made phone calls and generally tried to get to grips with the devastating news we received that day.  The photo below is the bench where we stopped to call close family and friends – what a blessing it was to be there with Jessica more than three years on, knowing that we were given the miracle that we prayed for that day.  Thank you God for answering our prayers that day – we know how very, very lucky we are.

It is amazing to think that in less than a week, Jessica will be three years old.  That time has gone by so very fast and it is wonderful to see how Jessica has grown and developed and become such a wonderfully happy chatty little girl.  She had her check-up from the community nurse today and is continuing to do really well  - her sats were in the mid 80s again which is very good for her, and she has had a little growth spurt in the last couple of weeks and now weighs in at 13.25kg.

 

It has also been a blessing to have recently met another heart family who live in our village and to be able to get together with our children and share stories and concerns.  The community of other heart families that we have got to know during this journey and the love and support of all our other friends and family has really been what has helped keep us going at times – thank you all for being there for us along the way.

Another good check-up

Jessica had her cardiac check-up yesterday at Oxford and is continuing to do well. Her sats were 77, which is slightly lower than they have been at home but still within her normal limits and there were no concerns raised from her echo. She is growing well - now 86.7cm tall and weighing in at 12.9kg, putting her just below the 2nd centile for height and staying on the 25th centile for weight. The plan is for another check-up in December. With regards to her next stage operation, there will need to be another cardiac catheter beforehand to check how Jessica's pulmonary vessels are growing but no plans for any surgery before 2015. Ideally, Jessica would be over 15kg before her next stage and if she continues along her current weight centile, that won't happen before she turns 4 so we are hoping that it will be at least another year before she needs any more surgery.

Jessica's eye-check up earlier this month also went well - she still has a squint in both eyes but neither eye is dominant (which is a good thing) and the glasses are helping and her vision is good with them so the plan is for another check-up in six months.

We have been continuing to get out and about over the summer, having found some more book benches (bringing the total up to 35 out of 50), spent lots of time visiting family and doing the Gruffalo trail and a treasure hunt with Auntie Fizz, Ebony and Erin and just generally enjoying the summer.

 

 

Jessica's journey has also featured in the summer issue of Heartline Families magazine.

A busy few weeks

We have been having a lovely time over the last few weeks, making the most of the sunshine and embarking on a new challenge now that we have visited most of the gold post boxes within a reasonable drive of home.  Books about Town features 50 different bench sculptures in the shape of an open book (with a 51^st bench due to be added at the end of August) which have been placed all around London and we have been enjoying getting out and about and trying to find as many as possible.  There are four different trails on the website and so far we have completed the City trail and visited most of the books on the Greenwich trail.  We are aiming to visit them all over the summer and Jessica and Sophie have been enjoying having their photos taken with them.  Jessica particularly loves being able to go on long walks (she really copes quite well with all the walking although we do always have the double buggy with us in case she gets tired) and particularly loved being able to run about in Greenwich Park.

Jessica had a check-up with the community nurse a couple of weeks ago and her sats were 85% which is the best they have been for quite a while.  She is continuing to gain weight beautifully and staying on the 25^th centile line – now weighing in at 12.63kg (27lb 12.5oz).   

We have been starting to look at pre-schools as Jessica will get her funded hours from January.  There are three options within a few minutes’ walk of our house and Jessica has enjoyed all her visits to these.  She painted a picture of a fish at one of them - her first painting where we could actually recognise what it was that she was painting which was a lovely little milestone.  We weren’t quite so impressed with that particular nursery though – the sign asking us to “pleese” press the buzzer to come in didn’t make for a very favourable first impression!  The other two pre-schools look much more promising though!

In the meantime though, we’re continuing to enjoy all our regular groups although most of them have now stopped for the summer.  Jessica recently did her first ever sponsored event at Tiny Talk, her toddler signing class, and did some signing to help fundraise for The Rainbow Trust and also received her fifty signs certificate – well done Jessica!  She has become very chatty this days and loves singing to herself, making up songs about whatever she happens to be doing at the time (just like Mummy does!).  She is just about getting there with recognising her colours now, knows the alphabet song and has started being able to recognise some letters and can now count to forty by herself (and is nearly there with getting to fifty).

Now that Sophie is crawling (and pulled herself up to standing for the first time today), she is much more able to get to whatever toys she wants rather than the ones Jessica is happy for her to play with and so sibling life is not quite as harmonious as it once was.  However, there are definitely moments when they play beautifully together which are a joy to watch, and moments when they both want the same toy or when Jessica gets annoyed because her sister is getting in her way.  Fun times!

Socially we’ve been busy – attending cousin Gracie-Mae’s christening and our friends Neil and Clare’s wedding as well as spending a few days visiting Nanny and going to see Auntie Maxine who was in hospital (thankfully she is much better now and back home).  We have had a day out at Legoland where we bumped into godmummy Katy, had a fundraising coffee morning at Christ Church and raised just over £60 for Friends of PICU, enjoyed a visit from Mummy’s friends Lisa and Ashley and spent lots of time in the garden just enjoying the nice weather.  On the whole, Jessica has coped very well with the heat and we make sure she keeps well hydrated.

Jessica is due to have her cardiac check-up towards the end of next month and also has her eye check-up next month as well – we will keep you posted with how she gets on with these.