Looking back over 2014

2014 has been a good year on the whole for Jessica.  We had one hospital admission, which was her planned admission for her cardiac catheter.  The results indicated that the pressures in her lung arteries are not too high although the arteries themselves are quite small and the team felt that they needed time to grow before her next surgery is planned.  At present, we anticipate that this surgery may take place towards the end of 2015 but it will depend on how Jessica is coping with her current circulation and the plan is to have another cardiac catheter investigation before planning this surgery.  Jessica has her next check-up at the end of January.  Her check-ups this year have generally been encouraging – her cardiac condition is currently stable and her community nurse checks have shown that her sats have generally stayed in the low 80s and that Jessica is gaining weight well.  We have a lot to be thankful for this year – she has done so very well and we pray that she will continue to do well through 2015 too.

We have had a lovely year as a family – enjoying our firstholiday abroad and lots of days out over the summer.  It has been wonderful to watch the sibling bond grow and develop between Jessica and Sophie – naturally, there are moments when there is conflict but on the whole they are adorable together and it is lovely to see how Jessica reaches for her sister’s hand to try and lead her places now that Sophie is able to walk alongside her and how loving they often are together.  We feel very blessed with our two beautiful daughters.

We were very proud of Jessica being so good about hanging her dummies on the tree for the baby reindeer to take away when our Christmas tree went up.  Whilst it did take a long time for her to settle down to sleep that first night, she didn’t cry for them and she has coped very well without them since (and was very happy with the little present the baby reindeer left behind as a thank you!)

Jessica and Mummy had fun on Christmas Eve making a gingerbread house and baking biscuits for Father Christmas as well as going outside to see his sleigh fly overhead.  Michael’s article reflecting on being a heart dad was featured in the winter issue of Heartline magazine which arrived in the post on Christmas Eve.

  

We enjoyed spending Christmas at home this year with Grandma and Grandad over to share the day with us.  The girls loved opening all their presents and have been having a lot of fun playing with their new toys.  We spent a couple of days after Christmas with Louise’s family and Jessica and Sophie had a lovely time seeing Nanny and their aunties, uncles and cousins from that side of the family.

We enjoyed ‘going on a bear hunt’ today to look for the Paddington bear sculptures that have been placed around London.  We had originally intended to try and look for them all but hadn’t managed to get into London to see them and as today was the last day, we decided that we should at least find some.  We managed to find 13 in total and Jessica loved seeing all the bears and having her photo taken with them.

The beginning of next month will see Jessica starting preschool – a big milestone and hopefully one that she will cope well with.  Our little girl is growing up so fast! 

Thank you as always to all our lovely friends, family and everyone else who has supported us on our journey as a heart family.  Wishing you all peace and blessings for 2015.

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.