Four years into the journey

It is four years today since our journey as a heart family started – four years since the scan which told us about our little girl’s special heart.  What a journey those last four years have been and what a wonderful blessing it is to be here today, watching Jessica grow and become the beautiful, happy girl she is today.

Whilst that first year was quite a rollercoaster ride, these last three years have seen us enjoying a normal family life in between all of Jessica’s various hospital check-ups.  We had one of these earlier this week – Jessica’s routine paediatric appointment and it was good to be told that she seems to be doing well.  Her sats continue to be fairly stable, staying around 80 and she is gaining weight well.  She has a cardiac check-up booked for later this month and we hope that this will also show that things continue to be stable.

We had Jessica’s first parent’s evening at her preschool and were so pleased to be told how well she is doing.  She is happy and sociable, on track with the various learning goals and is advanced for her age with numbers – being very confident with recognising and counting numbers to twenty and beyond.  Whilst we had one morning where she had a little wobble on arriving at preschool and got a bit upset about Mummy leaving, on the whole she is very happy to go and seems to really enjoy it.

We have also been enjoying some time together as a family and had a lovely day out last week at Legoland.  Both Jessica and Sophie enjoyed going on lots of different rides and had a wonderful time.

Four years into the journey – thank you God that we have come this far!

Three years post-Glenn, postboxes and preschool concerts

It is three years today since Jessica had her Glenn procedure, her most recent open heart-surgery and as always it is a day on which I find myself reflecting on how far she has come and how very blessed that we are to have had these last three years in which to watch her grow and develop and become the beautiful, wonderful little person that she is.  There are no words to describe just how grateful we are to the surgical team for getting her through on that day, all the wonderful staff on PICU and Ocean Ward, her cardiac team in Oxford and all the love and prayers of our family and friends who have helped get us through this journey so far.  A huge thank you to you all.  We will be having some cake later today in celebration of this little milestone.

Jessica’s first term at preschool has been a happy one – she has settled in so wonderfully and made some friends.  It was a joy to be able to see her taking part in her first preschool concert just before Easter and whilst she was too little overwhelmed by the sea of faces to join in with the singing, she was quite happy to sit on her key worker’s lap and join in with the actions to the songs.  Her preschool have been brilliant with regards to trying to be as well-informed as possible with regards to Jessica’s heart condition and how best to support her learning experience and are already being proactive with regards to thinking about a health care plan before Jessica starts primary school next year.  

We were also very proud of both girls for receiving signing certificates at their Tiny Talk class before Easter – Jessica can now do over 75 signs and Sophie received her 25 signs certificate.  These days Jessica’s constant chatter means that there is less need to be able to communicate through signing but she and Sophie both love going to toddler signing each week.

We enjoyed catching up with some other heart families at the Little Hearts Matter open day at the end of last month and attended some interesting talks about exercise, preparing for primary school and life post-Fontan which have given us some food for thought.  We also enjoyed celebrating with our friends Alex and Sarah at their twins’ naming day and Jessica and Sophie enjoyed being able to run about outside in the sunshine!

We have enjoyed some time away as a family over the last couple of weeks, travelling around the country on our quest to find the rest of the gold postboxes! We have now visited all 46 of the Paralympic ones as well as finding one extra Olympic one that wasn’t on our original list and have only the Olympic gold postbox on the Isle of Man left to visit before we have done them all! It is lovely to look back over the photos from the last three years of our gold postbox challenge and see how Jessica has grown up over this time (and see Sophie starting to be part of the challenge too!)

Jessica enjoyed staying at “the moon” each night (otherwise known as Premier Inn but it sounds so much more fun to go to the moon each night) and as she slept in a single bed throughout the whole trip, we realised it was high time we took the sides off her cot and converted it into a bed (something we hadn’t got around to as she has always seemed happy in her cot and never made any attempt to climb out).  So far she seems quite happy in it and loves her new Peppa Pig duvet set!

Whilst on our holidays, we also enjoyed celebrating with our friends Rachel and James at their wedding – both Jessica and Sophie enjoyed the ceilidh in the evening and Jessica did a pretty good attempt at the Gay Gordons! We also got to catch up with godmummy Gillian and attend the Palm Sunday service at her church – it was lovely to meet some of the people there who have been praying for Jessica.  We had a lovely afternoon at soft play whilst visiting Gillian although Jessica did give us a bit of a fright by managing to slip out of the toddler area without us noticing and the couple of minutes between realising she wasn’t in the toddler area and discovering her in the bigger kids area felt rather long!

We visited lots of places on our trip around the country – Urquhart Castle on the banks of Loch Ness, the RRS Discovery in Dundee (which is the ship that took Scott on his first trip to the Antarctic), the Pontcysyllte Aqueduct, the National Showcaves in Wales (where Jessica enjoyed seeing all the dinosaurs in the dinosaur park and painting her own dinosaur picture) and also got to catch up with our friends Fred, Steph and Cecilia and Neil and Sandra on the way home.

Since being home, Jessica has been enjoying spending time with some of her cousins on Michael’s side of the family as cousins Elisabetta, Seren and Siân have all come over for a visit and this weekend will see her enjoying time with her other cousins on my side of the family as Auntie Fizz, Ebony and Erin are coming to stay.

Heart-wise, things seem to be stable at present – Jessica’s sats were slightly lower at her last community nurse check-up at around 78-80 but she seems well in herself and not noticeably bluer than usual.  

Being pleased with Jessica's progress

After our last clinic appointment, Dr Archer was going to meet with the rest of the team to discuss the plan for when Jessica’s Fontan was likely to take place – whether they would aim for later this year or try to hold off until spring 2016 (or later).  This morning, we got a letter through from Dr Archer which told us that “everyone is very pleased with her progress” and “there doesn’t seem to be any reason to recommend further investigations at this time and we would all be very happy if there was no need to look further into completion of the cavopulmonary circuit until 2016 but of course we will keep an eye on her progress.”  It is such a relief to know that the team are happy with Jessica’s heart function at present and that hopefully there will be no surgery planned for this year unless Jessica shows signs of needing it.

During the winter, she often does look more blue due to the colder weather and you can see from the photo below which I took for CHD Awareness Week the colour of Jessica’s hands compared to mine.  It is reassuring to have the regular checks from the community nurse which show that Jessica’s sats are still staying in the low 80s and that she is continuing to follow the 25^th centile line with regards to weight gain.

We noticed at the end of Jessica’s first half-term at preschool that she was getting very tired in the afternoons.  Whilst we know that being more tired as a result of being a preschool is very normal for heart-healthy children, we weren’t quite so sure whether Jessica’s tiredness was likely to be a cause for concern but were reassured by the cardiac liaison nurse that if she is not looking more blue and there aren’t any other concerns, it is likely to be just normal preschool tiredness.  Having a week off at half-term and spending time with her cousins seemed to help perk her back up again!

We have had a lovely month catching up with family and celebrating Grandma’s birthday, enjoying a brief moment out in the snow (before it all melted away) and having fun doing crafts at home and going out to the park.  Daddy has been away working on an event for the last couple of weeks though and we are all very much looking forward to him being back home again at the weekend.

 

 

A tale of two check-ups

Jessica had her cardiac check-up at Oxford this morning and her heart function continues to look good and she is gaining weight well – measuring in at 14kg exactly and 89.9cm (so should reach that magic 0.9m mark before Legoland opens in the spring so she can go on a few more of the rides!)  Her sats were 77 which is slightly lower than they tend to measure at home (usually in the low 80s when our community nurse visits) but according to Dr Archer this is quite normal and is probably because home is a little bit warmer than the clinic room.

We are starting to think ahead now towards Jessica’s next stage surgery, the Fontan procedure and it is a little scary that this procedure is now starting to loom ever nearer.  This timing for this will be discussed by the team across Southampton and Oxford before our next appointment sometime towards the end of May.  Ideally, the Fontan procedure would not take place during the winter (when PICU tends to be busier due to winter illnesses) and so the debate now is whether Jessica’s Fontan will happen later this year or whether the team feels she will be able to wait until Spring 2016 (or perhaps beyond).  Whatever the decision is, she will need to have another cardiac catheter procedure before this in order to check that her pulmonary arteries are growing well enough for her to cope with the Fontan and some ballooning may be necessary to enlarge them.

We had an unexpected second trip to hospital this afternoon as whilst travelling back on the motorway from our appointment in Oxford, our car was hit from behind whilst (thankfully) in a slow-moving traffic jam.  None of us appeared to be particularly hurt, although of course both Jessica and Sophie were upset and a bit shook up by it.  We felt though that it would be best to get Jessica checked over just to make sure she was okay.  We have open-access to the children’s ward at our local hospital anyway, and they advised us to take Jessica to A&E.  After having an ECG done and being checked over, the doctor was happy that all was fine and we could go home. 

Other than hospital visits, all has been well.  Jessica is loving her preschool – she frequently tells us ‘I love my preschool’ and chatters constantly about the friends she has made there.  It is wonderful to see how well she has adapted to this change in her life.  She also had her preschool booster jabs last week and was a very brave girl – didn’t even make a little bit of fuss although demanded a sticker as soon as the nurse had finished!  That’s what happens when you get used to lots of hospital appointments and getting stickers for being a brave girl…! 

The issues that we had with getting one of Jessica’s medications have now thankfully been resolved and our pharmacy has been able to obtain it again.  Hopefully we won’t have any more issues with this. 

Jessica starts preschool

Jessica took another significant step on her journey today, taking her first steps into independence as she started preschool for the very first time.  She was very excited about going and a passer-by seeing her waiting at the gate would have thought she’d been going to preschool for weeks – she was waving at all the other children and saying hello even though she didn’t know any of them! Once inside, she barely waited long enough for Mummy to take her coat and boots off and give her a kiss goodbye before she was off to play with the toys.

 The morning seemed quite long and quiet without Jessica’s chatter, singing and impulsive hugs but Sophie enjoyed having some one-to-one time with Mummy for a change.  At pickup time, Louise was a little disappointed that nothing was said about how Jessica had got on although Jessica seemed happy and said she’d enjoyed herself.  Louise called the preschool later in the afternoon to find out more about how Jessica had got on and found out that Jessica’s key worker was absent today due to a family emergency and a miscommunication amongst the preschool staff meant that everyone thought that someone else had given the update.  Jessica had enjoyed playing with Minnie Mouse and Daisy Duck dress-up figures, had had some time playing outside and had been very chatty and sociable.  She’d asked for Mummy once whilst having her nappy changed, telling the preschool staff that she wanted to cuddle Mummy but otherwise had been fine with being left.

It is lovely to see how sociable and friendly Jessica is and how well she has coped with this little milestone.  It was the first time that she has been left with people we don’t know since her stays in hospital and it certainly felt like a big step from our perspective.

In other news, we are still having big issues with trying to obtain one of Jessica’s medications as all the pharmacies we have contacted in the local area are out of stock with no idea of when it will be back in stock again.  We should just about have enough to last until the next cardiac check-up at the end of this month and the cardiac nurses are aware so hopefully we will be able to find a solution to this problem.

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.