Getting ready for Christmas

This time of year always brings back memories of Jessica’s first Christmas.  Putting up the decorations brings back memories of Michael helping put them up on Ocean Ward while Jessica was in theatre having her Norwood procedure.  Putting together the little wooden tree that was Jessica’s very first Christmas tree instantly transports me back to that moment beside her cot in PICU when I put it together for the first time.  Here we are, four years on, and looking forward to being able to spend Christmas at home together as a family, knowing how lucky we are to be able to do so.

There have been some magical moments in the run-up to Christmas.  The festive season started off with the Families of Ocean Ward Christmas party where Jessica and Sophie got to see Father Christmas and had fun joining in with the party games and dancing.  Jessica loved having her face painted and was very excited to win a prize in one of the games too.

We had a magical day out at Legoland where we got to see Father Christmas yet again as well as enjoying some of the rides without any queues.  The Christmas lights were so beautiful and the visit to Father Christmas was so well done – we were greeted by elves and led through a maze of twinkling Christmas trees all the way to Father Christmas’s cabin where Jessica responded to his question about what she would like for Christmas with “a present!”  I think that one can definitely be managed!

Jessica enjoyed taking part in the Christmas concert at preschool and it was lovely to see her joining in with the singing and the actions.  She has really come on over this past year – she was so shy during the Easter concert and it was a joy to see how confident she was this time around.  

This year, Jessica is much more aware of the build up to Christmas.  She was so excited when she came downstairs one morning last week and saw the Christmas tree – “It’s Christmas in our house!” – and she has been frequently asking “how many sleeps until Father Christmas brings the presents?”  It’s wonderful to re-live the magic of Christmas all over again through her and Sophie’s eyes and we are looking forward to enjoying Christmas together as a family.

Wishing you all a very Merry Christmas – and sharing a Christmas greeting from Jessica and Sophie:

The end of an era

Jessica had her cardiac check-up yesterday and her last appointment with her wonderful consultant Dr Archer, who is retiring at the end of the year.  We were very sad to say goodbye to Dr Archer as he has been there since the very start of Jessica’s journey, from the day she was diagnosed, and was also a key part of the team who performed Jessica’s in-utero surgery.  He has been a huge part of this journey for over four years and we are immensely thankful for everything that he has done for Jessica that has helped her to be here today.

To start again with a new consultant next year is quite a scary thought – we don’t even know yet who our new consultant will be.  We keep reminding ourselves though that there are still people in the teams at Southampton and Oxford who have known Jessica since she was a baby and that whoever takes over from Dr Archer will be well informed about Jessica.  Although the uncertainty that comes with change is unsettling, holding on to our faith and remembering that God is always constant and bigger than all of this has helped hugely.

Thankfully, all was well with Jessica’s check-up yesterday – her heart function is still good and her sats remain in the low 80s.  She is growing and gaining weight nicely and there are no plans to move forward with regards to planning her Fontan procedure as yet.  The team are happy to continue to monitor her with the next check-up due around late March/early April.

It was very reassuring to be told that Jessica’s heart function remains stable – we had been a little worried recently as Jessica had been much more tired since starting back at preschool, and has been asking to go in the buggy when out and about a lot more.  Whilst we knew that her tiredness was probably due to being back at preschool (especially as she is now going three mornings a week instead of two), her heart condition makes it more difficult to be sure whether it is just “normal” back-to-preschool tiredness or an indication that her heart is not working as well as it was.  Since the half-term break though, she has picked up a little more energy-wise, which is also encouraging.

Jessica also had her eye check-up last month and whilst her eyesight is fine with her glasses on, she is now at an age where the team there would be thinking about offering surgery to help correct her squint.  The surgery would be mostly cosmetic rather than being necessary to improve Jessica’s eyesight, and does not need to be done at a particular age so we can wait or decline if we wish.  We have discussed it with Dr Archer who has advised that if we decide to go ahead with this procedure that it should be done at either Oxford or Southampton and that we should wait at least six months after the Fontan procedure if we want to hold off until she is older. We have another eye appointment in February and will discuss it further then.

Hospital check-ups aside, we have had a lovely couple of months – Jessica has enjoyed having a pirate day at preschool, having her face painted at Apple Day, celebrating Sophie’s second birthday and visiting our “favourite Legoland ever” for the last day of the season.   We have visited our local infant school and filled in the application form for Jessica to start school next September.  Our little girl is growing up so fast – she is becoming more and more independent every day and often tells us “I can do it myself.  I am a grown up!”  

Happy 4th birthday, Jessica!

It is amazing to think that this time four years ago, Jessica was having her first open heart surgery and today our little miracle has celebrated her 4th birthday. She has been counting down the number of sleeps for the last few days and was very excited first thing this morning when she saw her birthday card read out on CBeebies.  We had a party this afternoon with some of Jessica’s friends and family and she had a wonderful time enjoying the sunshine in Grandma’s garden and opening lots of cards and presents!

Tomorrow morning, Jessica will be starting back at preschool again, and will be going for three mornings a week.  We have enjoyed the last few weeks of the summer holidays – spending a few days staying with Auntie Fizz and cousins Ebony and Erin, blackberry picking in Grandma’s garden, picnics in the garden, treading grapes to help Grandma make wine and having fun doing crafts at home during the rainy days.  We have been focusing on potty training over the last few weeks and have been so proud of how well Jessica has done with this.  

Jessica has enjoyed being able to go back to her “favourite Legoland ever!” now that our preschool passes are valid again.  It is so lovely to watch her and Sophie wandering about hand in hand as they explore the park and to see how close they are.  Bedtime is particularly beautiful as Jessica always has to give Sophie a big cuddle and kiss and say “I love you Sophie” before she goes to sleep.  Sophie’s response of “luz you Jess-sha” is adorable too!

We had a visit from the community nurse last week and Jessica’s sats were back up to 83% which is really good.  The results of the chest X-ray have come back and all was fine with that so last month’s dip was hopefully just a little blip.  We are still waiting to hear when Jessica’s next cardiac check-up will be as this month’s appointment was cancelled.  

It is amazing to see how well Jessica is doing and to see how far she has come.  This past year has been the first one without any hospital admissions and it has been amazing to just enjoy a normal, happy family life.  A huge thank you to everyone who supports us on this journey – the wonderful team on Ocean Ward and PICU whose skills got Jessica through all her surgeries and the recovery period afterwards, and all our friends and family whose love, support and prayers have helped get us this far.  We feel incredibly blessed to be here today, watching Jessica celebrate her 4th birthday and enjoying every minute of it.

Little challenges

The last few weeks have been all about completing various challenges.  We’ve been hunting for the different Shaun the Sheep sculptures around London and Bristol and have managed to find all 120 of these.  Jessica has loved finding all the different sheep and is quite addicted to the iPad app for finding them – she loves to flick through the pictures of all the sheep we have seen and name them.  

We had a lovely family holiday on the Isle of Man where we managed to find our final Olympic gold postbox and complete the challenge that Jessica’s godfather Bryan set us nearly three years ago.  It is lovely to look back on all the photos of the different postboxes and see how our family has changed and Jessica has grown up in that time.  Jessica enjoyed her holiday very much – she had fun building sandcastles on the beach with Sophie and enjoyed going on the mountain train, steam train and horse-drawn tram.

We had a community nurse visit the day after getting back home again and were a little concerned that Jessica’s sats were lower than usual at around 74-75 (she is usually around 79-81) and after discussion with the cardiac liaison nurse at Oxford, we were asked to bring Jessica in for a check-up the next day.  Thankfully all seemed to be well with Jessica’s heart function on her echo and her sats had come back up to normal levels so the team are happy to continue with the present plan to monitor with no intervention planned for this year.  Jessica also had a chest X-ray which we are awaiting the results of.  She got a certificate for being very good at standing still and having this done (and Sophie also got a certificate for waiting patiently while Jessica had her X-ray).  Our next planned appointment is at the beginning of next month but if all is well with the chest X-ray then this will probably be moved back.  

Otherwise, Jessica is doing well and continues to be a very happy and active little girl.  She is starting to get quite excited about her birthday next month and tells us every day that “it will be my birthday soon!  I going to be 4!”

It is the little blips like we have had this week that remind us again of the reality of Jessica’s heart condition and the need for future surgery but to hear her chattering so excitedly about her birthday makes us realise again just how very lucky we are to have her.  The last four years have gone by so very quickly – sometimes it seems that it was really only yesterday that she was a tiny baby and now she is getting to be quite a big girl. 

Four years on from the first step

This time four years ago, Jessica had just taken the firstbig step on her journey, having come through her very first heart surgery whilst still in the womb.  Four years on from being given that glimmer of hope, it is wonderful to see Jessica continuing to do well.  We will always be so thankful to the wonderful team from the John Radcliffe who took that chance on a risky and new procedure four years ago in order to give our little girl a chance to survive.

 

We’ve had a couple of hospital appointments in the last month.  Jessica had her cardiology check-up at Oxford towards the end of last month and her heart function continues to be good, with no plans for any intervention to take place this year which is reassuring, and the next check-up due to take place in early September.  She also had a check-up for her squint and the ophthalmology team are happy that Jessica’s vision is developing well with the squint continuing to flick from one eye to the other so neither eye is dominant.  At present, the plan is to continue monitoring although it may be that she will need surgery for this at some stage.

Jessica had her first sports day at preschool last week which was a very proud moment.  As she crossed the finish line a long way behind her friends, she gave Mummy a big grin and said “Look Mummy, I’m the winner!”  It was such a joy to see how much she enjoyed taking part even though she couldn’t quite keep up with the pace of her friends.

We’ve had lots of lovely days out at Legoland; visited two gold lock controls on the Thames as a slight variation to our gold postbox challenge; went on a hunt around London to find all 50 Shaun the Sheep sculptures; saw In the Night Garden Live with our friend Denise and godmummy Katy and enjoyed a day out at the Charlie Jones Foundation family fun day. 

Four years on – what a blessing it is to be able to look back with our beautiful, happy girl here with us and doing so well.  Laughing whilst chasing Sophie around the garden, chattering away and coming out with phrases that make us giggle (“come on Mummy, tuck in!” was one that made me laugh today) – our little miracle continues to be a ray of sunshine and we are very thankful for her.

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.