Three years on from the Norwood

Three years ago Jessica had her Norwood procedure, a long anxious day for us with a very scary hiccup at the end of the day when Jessica had to have her chest re-opened on PICU. Looking at our beautiful little girl now and seeing how happy and active she is, we realise again just how thankful we are to Mr Haw and his team for all they did that day.

The festive season is here again and we have been to our first party of the year - the Families of Ocean Ward Christmas party. Jessica had a wonderful time and it was the first party where she really interacted with the other children which was lovely to see. Sophie too enjoyed herself at first but then became unwell towards the end of the party and we had a week of her being very unwell. Thankfully so far other than one evening of being poorly, Jessica has been fine (if it was the flu as Louise suspected then hopefully the flu jab will have protected Jessica from it). Whatever it was, it certainly knocked Sophie for six so fingers crossed Jessica stays well.

After a couple of years of having a smooth ride with regards to obtaining Jessica's meds, we have encountered a problem with getting captopril as when we went to the village pharmacy with the repeat prescription, we found they were out of stock of the dose we need and there is a supply issue with the manufacturer and no-one knows when this will be resolved. We have managed to find a small supply at a larger pharmacy nearby which will keep us going until after Christmas but then will need to try and find more elsewhere or an alternative if the issue is still ongoing.

On a more positive note, Jessica is continuing to do well. We have visited her preschool again to hand in her health forms and she was happy just to run in and play so hopefully will enjoy it. Can't believe she will be starting next month!  Her community nurse checks show that Jessica's sats are still in the mid 80s and she is gaining weight well.  Now that the cold weather is here, there are more moments of her looking a bit blue but she tends to pink up well once she has warmed up again.

Jessica features on the 2015 calendar for the Charlie Jones Foundation to help raise awareness of hypoplastic left heart syndrome.  The calendar features photos of children who have HLHS or have gained their angel wings as a result of HLHS and Jessica is one of the May children (along with baby Charlie Jones).   The calendars cost £5 each so if you haven’t got your 2015 calendar yet and would like one featuring lots of amazing heart warriors, you can buy one here! Jessica's photo also features on the Tiny TickersChristmas newsletter this month too.

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.