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, 30 December 2014

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.
Little Hearts Big Love

Sunday, 14 December 2014

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.