Jessica's final journey

Yesterday’s celebration of Jessica’s life was everything that we wanted it to be for her. A beautiful sunshine day, surrounded by family, friends and love, sharing memories of a little girl who touched so many people’s hearts. It was a day of both sadness and smiles, laughter and tears and was a fitting tribute to our little miracle.

Photo taken by Charlie Pugh

We were able to spend some time with Jessica in the last couple of days before her funeral. Being able to sit with her, to hold her hand, look at her beautiful little face and give her kisses, to read some of her favourite stories to her and to tuck her in one last time with her Kerry snuggled next to her was such precious time.


Jessica arrived at our home for the last time at 12.30pm. The three of us, along with Jessica’s grandparents followed her to the church for the celebration of her life. The service was led by our minister Nick. Nick’s first service at our church was two days before Jessica was born. We are glad that he was able to lead her last service at church, having known her throughout her short life.

It was a beautiful service. Jessica’s godparents Bryan and Nicki shared our chosen Bible readings. Michael and I shared our memories of our little girl with her special heart, reflecting on how she taught us to live life to the full and enjoy every moment. We have so many happy memories to look back on and we are thankful for them all. Jessica’s godmother Katy shared a poem she had written as a tribute to Jessica. Jessica’s reception teacher, Miss James, shared some memories of Jessica at school and Stephanie, the Girls’ Brigade Captain, shared her memories of Jessica at Girls’ Brigade. These were followed by a video showing photos of Jessica throughout her life, interspersed with a couple of video clips of her, and finishing with one where she takes a final bow. The way she used to bow after doing a dance, or a show always used to make us smile. It felt like the right way to end the video sharing memories of her life.

Photo taken by Charlie Pugh

After the service, Jessica’s pink heart-covered casket was carried to the meeting area in the church to allow people to say their last goodbyes to her. The church was absolutely packed. A huge thank you to Michael’s colleagues for setting up screens and a sound relay into the meeting area and side room to ensure that those attending were still very much part of the service even though we couldn’t fit everyone into the chapel, Tracey who organised the refreshments and beautiful cake display and the church staff and stewards who helped make everything run smoothly. We only had a short time at the church before we had to leave for GreenAcres and we didn’t manage to speak to everyone who attended. Thank you so much to everyone who came – we certainly felt surrounded by your love and support even if we weren’t able to speak to you in person.

Photo taken by Charlie Pugh

We were honoured to have a police and TFL escort holding the traffic to help the first part of Jessica’s journey from church to her final resting place at GreenAcres.

The service at GreenAcres was a much more intimate one with Jessica surrounded by the closest members of our family, her godparents and a couple of our close friends who had been a significant part of her journey. Nick led the beautiful brief service at the graveside, with godmummy Gillian sharing a poem before Jessica was laid to rest in her forever bed. We each threw in a pretty flower for her and Sophie pressed the button to start the bubble machine. She and Jessica always loved trying to catch bubbles in the garden together. As Sophie gave Jessica her flower and tossed in a little handful of earth, she waved and said “bye, bye Jessica.” Throughout the service at church, and the one at GreenAcres, she was a little superstar.

Photo taken by Charlie Pugh

Photo taken by Charlie Pugh

We were welcomed by our family and friends shortly afterwards at Chalfont St Peter Community Centre where we shared memories of Jessica over sandwiches, cakes and cups of tea. It was lovely to be able to spend time with family and friends and remember our little girl.


We have been so touched by all the little things that have been done so far in Jessica’s memory, and those that are planned. Sophie’s preschool has created a garden area for the children with pretty flowers, a bench, butterflies and dragonflies and called it “Jessica’s garden”. Jessica’s school held a day for her – “Jessica’s day” – the day before her funeral where the children came dressed as princes and princesses and had a balloon release in her memory. It made us smile to see one of the male teachers dressed in a princess dress for Jessica. He will be Sophie’s teacher next year when she starts in the same reception class that her sister was in.

Thank you to everyone who came to Jessica’s celebration, who have shared messages of love and support on our social media, or who have simply been holding us in prayer over these last few weeks. Thank you also to those who were involved with the arrangements yesterday and helped make that final journey an easier one. Yesterday was a tough day, but we felt so surrounded by love throughout. You all did Jessica proud and made her send-off a truly beautiful and special one. This morning has been harder still – having to start facing the reality of life without Jessica without having the focus of her funeral to distract us.


I had originally intended for this to be the final post in Jessica’s blog as her last journey. However, her story is still a little unfinished. We are still waiting for the final results of the post-mortem and so her cause of death remains unknown. It may be that the results are inconclusive but we will update this blog when we are able to share this piece of information about Jessica’s journey and if there are any future stories to share about the things that are being done in Jessica’s memory. The stories of our life as a family and our own journey through our grief will still continue over on Louise’s blog at https://littleheartsbiglove.co.uk

Now you are five: milestone moments

Five years ago today, Jessica had the second part of the hybrid procedure. Back then we lived from moment to moment, riding the rollercoaster that is life in PICU, not knowing if we would get to take our beautiful girl home. Today I sat in the garden, enjoying the sunshine and listening to the squeals of delight from Jessica and Sophie as they slid down their slide into the paddling pool. A world away from those early days - being able to just relax and enjoy the moment, to be able to look a little ahead and experience the wonderful blessing that is normal family life. What an amazing thing that is.

It's been an eventful few weeks with a couple of big milestones being celebrated. We had a lovely summer with lots of days out here and there. This year we set ourselves a challenge to travel from Land's End to John O'Groats by public transport in aid of Little Hearts Matter and were very impressed by how well Jessica and Sophie coped with the long train journeys over the four days we spent travelling.

Jessica started school for the first time last week. Her infant school starts children on full days from their first day. We did have the option to start Jessica more gradually but have agreed with the school to see how she gets on and if she is exhausted we can pick her up early. So far she has coped well with the long school days, and hasn't been any more tired than we would have expected her to be. The school seem to be good so far at keeping an eye on Jessica especially in this current hot weather and we have a healthcare plan in place which we are happy with. Jessica seems to be enjoying school so far and we were especially proud to see that she was awarded a WOW of the Week last Friday for trying hard at everything.

We also celebrated Jessica's 5th birthday last week and had a birthday party at Grandma and Grandad's house which Jessica declared "the best birthday party ever!" even before all her guests arrived! She was late into school on the morning of her birthday as she had a check-up with the paediatrician which was very positive especially as Jessica is now gaining weight again. Jessica was very excited at having her birthday at school and it made me laugh when her teacher told me that Jessica curtseyed when all the children sang Happy Birthday to her. We also managed to get a birthday card shown on CBeebies and capture Jessica's reaction when she first saw it.

We are due to have another hearing test next month to check whether Jessica still has glue ear and our next cardiac check-up is due around the end of November. Hopefully the next few weeks will just be all about settling into our new routine with school.

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.

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.  

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!)  

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.