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

Jessica's funeral details

We have been busy over the last week making arrangements for Jessica’s final journey. It has been incredibly tough and reality has hit us very hard at times. We have chosen the spot for Jessica’s forever bed at GreenAcres, picked out her casket and the last set of clothes she will wear and started to consider the details for the service celebrating her life. We can now confirm the timings and location for the celebration and wake, which are as follows:

Celebration of Jessica’s life

Friday 18th May 2018, 1pm at Christ Church, Redford Way, Uxbridge UB8 1SZ

Tea and coffee will be available after the service

Please note that the church car park will be reserved for blue badge holders and the close family members who will be attending Jessica’s burial at GreenAcres.


There is plenty of parking available nearby. The nearest car parks to the church are the Sainsburys car park and the Cedars car park. You can park in Sainsburys for a maximum of 2 hours for £2. Please note that there is ANPR in this car park so don’t exceed the maximum stay of 2 hours. The Cedars car park costs £1.40 for 2 hours for non-Hillingdon residents. There is no maximum stay in this car park, other than being limited to car park opening times (it closes in the evening after the shops shut). There is also on-street parking on Belmont Road although this is very expensive, especially for non-Hillingdon residents and the meters have a tendency to swallow coins. We’d advise parking in Sainsburys or the Cedars instead.


For those coming by public transport, Christ Church is opposite the bus station and Uxbridge underground station. If you are coming by train, you need to exit the station by the side entrance (heading towards the bus station) rather than the High Street entrance.


We would like to ask for donations to Little Hearts Matter instead of any flowers please. The JustGiving page that was set up previously by one of Louise's blogging friends has now closed, but we have set up another JustGiving page if you would like to donate through this.

Jessica’s burial

This will take place at GreenAcres at 3pm and will be a private service for the immediate family and Jessica’s godparents.

Wake

You are welcome to join us for the wake following the celebration of Jessica’s life. This will be held at Chalfont St Peter Community Centre, Gravel Hill, Chalfont St Peter, Bucks, SL9 9QX from 3pm. Tea and coffee and refreshments will be available here.


There is an on-site car park at the community centre and parking is free here. If this car park is full, there is a nearby car park in Church Lane. There is a charge for parking in the Church Lane car park which you can pay at the machines or by mobile phone.


One of Michael's colleagues will be providing minibus transport from the church to Chalfont St Peter Community Centre if you are coming by public transport - thank you Oliver!


If you are thinking of joining us for the celebration of Jessica’s life and/or the wake afterwards, please could you let us know by filling in a very short form here if you haven’t already done so. This is just so we have an idea of what numbers we can expect to help us with some of the practical arrangements.We would also like to ask that people avoid wearing dark coloured clothing if possible.



Thank you for continuing to keep us in your thoughts and prayers. We are very much taking things moment by moment right now and trying to get through each day as best we can.

Making arrangements for Jessica’s final journey

The last week has been such a huge rollercoaster of emotions. There are times when we can’t quite believe that Jessica has gone and then in the next moment, reality hits and we are consumed by our pain. Sophie has been coping well on the whole, but she does now realise that Jessica will not be coming home again and there are moments when she breaks her little heart over the loss of her sister and playmate.

We are thankful that we were able to visit Jessica at Wexham Park a couple of times before she was transferred to the John Radcliffe last Wednesday. The post-mortem was carried out on Thursday and at present, the cause of her death remains unknown. The pathologist has taken tissue samples for testing and it will be a few weeks before we know the results from these. In the meantime though, the coroner has been able to issue an interim death certificate to allow us to go ahead with funeral arrangements.



We will be having a celebration of Jessica’s life at our church in Uxbridge (Christ Church) on Friday 18th May in the early afternoon. Jessica will then be taken to GreenAcres Chiltern woodland burial ground in Seer Green which will be her final resting place. This will then be followed by a wake somewhere nearby. We will confirm the details of timing and locations on this blog once we know them ourselves. It would help us if you could let us know if you would like to attend the celebration and/or the wake after Jessica’s burial by filling in the form here. This is just so we have an idea of rough numbers to expect which will help us with some of the practical arrangements.

Thank you all so much for your love and support since Jessica’s passing. We have received so many cards, flowers and little gifts for Sophie and your kind words have helped us know that we are surrounded by love and prayers. Thank you too to everyone who donated to the JustGiving page which has raised over £6,000 (inc. Gift Aid) for Little Hearts Matter.

Journey's end

This is the post that I always feared I would one day have to write. It breaks my heart to be writing it now. Our beautiful Jessica passed away in the early hours of this morning. She had been unwell on and off for several weeks after returning to school. We had several doctor’s visits, a couple of trips to hospital and an emergency admission earlier this week. When she was discharged on Thursday with a big bag of meds, we thought that these would finally help her start to get better. Sadly, it was not to be.


Last night, she woke up coughing and came for a snuggle in our bed. She complained that her back and tummy hurt and then suddenly she stopped breathing. We called 999, tried CPR which the paramedics and A&E staff continued but to no avail. Our beautiful Jessica was gone.

To say we are heartbroken is an understatement. We are devastated beyond belief and yet thankful that we had six and a half wonderful years with this beautiful little girl of ours. Seven years ago, we were told that she would not survive for more than a few days. To have had so long with her was a huge blessing. We thank God for every day we had with her. No amount of time would ever have been enough though.

We were lucky to be able to enjoy a family holiday with Jessica in the last couple of weeks and we made some wonderful memories which we will treasure forever.


Sophie has been our little ray of sunshine. We don’t think she fully understands yet – she knows that Jessica is in hospital and that Mummy and Daddy are sad and miss her, but I don’t think that she yet realises that Jessica will not be coming home again.


Our beautiful girl is now out of pain – no more breathlessness, no more struggles with energy. Her special heart is whole again but ours will always have a big Jessica-sized hole which can never be filled.

Thank you so much for all your kind messages of support and love on social media today. We know that we are surrounded by love and prayers and we are eternally grateful for that. Please, please keep talking about Jessica. Don’t ever feel afraid to mention her name. She is our little girl, she is part of our family and we will want to talk about her, to remember her, to relive all those beautiful memories. We know that many of you feel that you have no words, that you may not know what to say. The fact that you are letting us know that you care is enough.


One of Louise’s blogging friends has kindly set up a JustGiving page in Jessica’s memory to raise money for Little Hearts Matter. They have supported us so much through this journey and we know they will continue to do so in our bereavement.


Jessica will be going to the John Radcliffe on Monday for a post-mortem to determine the cause of her death. It seems appropriate that the hospital where this journey first started; the hospital that gave us that first glimmer of hope is the hospital to give that final piece of information about her life.


We will update again when we have more information. Thank you all again so much for your support and love. It means a lot to know that Jessica touched so many hearts in her short life. She was truly a joy-carrier and we were so blessed to have been her mummy and daddy.

Seven weeks on: post-Fontan check-up

Jessica has been recovering well at home over the last few weeks. Her energy levels are now back up to where they were before her surgery and hopefully will continue to improve. She has enjoyed having “school at home” with Mummy since coming home and it has been lovely to have that one-to-one time with her.

We were back in Southampton today for Jessica’s second post-Fontan check-up. She coped well with the echo and ECG and surprised herself with how well she coped with all the stickers being taken off her chest afterwards too! She’s doing quite well – her heart function looked good on the echo and she can now come off the diuretics which leaves her with just aspirin and Vitamin D on the medications front.



Her sats are still a little on the low side though. Today they were around 78 which is about the same as they were pre-Fontan. Hopefully they will start to improve over time but if not, Jessica may need to have an MRI to have a closer look at her heart to see if there is anything else causing the low sats, such as extra blood vessels bypassing the Fontan circulation. In the meantime, she will continue to have monthly sats checks with the community nurse as she did before her surgery.

Our other slight concern has been with Jessica’s voice. She’s quieter than she was before the surgery and still sounds hoarse at times, especially when she tries to raise her voice or shout. We’ve been reassured that this should gradually improve but if not, Jessica will be referred to an ENT specialist for further investigation.



Sats and voice aside, she seems to be doing well though. Her appetite has noticeably improved over the last couple of weeks and it was nice to see a weight gain in clinic today! She has also been given the green light to go back to school again tomorrow – starting back on half-days this week and then hopefully going back to full days next week if she copes well.



In other news, as many of you already know, Jessica and Sophie are very excited at the prospect of having a new sibling who is due in August. They have known about baby “Peanut” since Christmas and other than Jessica telling all the doctors and nurses about Peanut while she was in hospital, have done very well at keeping it a surprise. It’s lovely though to finally have our news out in the open and be able to share it now. Jessica has already asked whether Peanut will have a special heart like her. We should be having some extra heart scans over the coming week to find out the answer to that one.

As far as Jessica’s special heart goes, we’ll be back in Southampton again in four months’ time for her next check-up. Hopefully there’ll be some improvement in her sats levels between now and then. In the meantime though, we’ll make the most of being able to enjoy normality once again.

Post-Fontan recovery: Home on day 16!

We were very pleased last week when we thought that Jessica would be coming home this week. We didn’t expect that we would get to go home on Saturday though! With Jessica’s NG tube being removed on Saturday morning along with her cannula and drain dressings, there was really no reason for her to stay in hospital any longer. Saturday afternoon saw us packing up and heading home for Jessica to start her recovery at home!

While we were absolutely delighted to be coming home, we kept a little quiet about it on social media on Saturday. We wanted to be able to surprise our church family by turning up all together. It was especially lovely because of it being a church parade service (where the Girls’ and Boys’ Brigade members join in with the service) so both our girls were there in their uniforms.

We had a little worry last night as Jessica was coughing a lot and sounded a bit chesty. Thankfully a check-up with the GP this morning shows that her chest is clear. Hopefully it is just a little bit of a cold and won't cause too many problems with her recovery.


It is lovely to be home again. Jessica will be off school for the next few weeks as she recovers at home, but Sophie went back to preschool today and enjoyed seeing her friends. We have a follow-up appointment in Southampton for Jessica on Friday to check how she is recovering and will be taking things easy this week as we get used to being home together. A huge thank you to everyone for your love, support and prayers. After previously having surgical stays of at least four weeks, it is amazing to be home at a little over two weeks following the surgery.

Post-Fontan recovery: Days 14 and 15 (Ocean Ward)

Jessica has had another good couple of days. Getting around the ward has been much easier since the chest drain came out as she’s only had an IV pole to take long with her. She quite enjoyed standing on the pole and being pushed around – a much quicker and easier way to get about! She has been able to come into the ward kitchen with Mummy to have breakfast and her appetite has improved so much that the dietitian has been happy to stop Jessica’s overnight feeds through the NG tube. Hopefully this will be able to come out at some point today.

After being without Sophie for more than two weeks, it was wonderful to finally be reunited again on Thursday evening. The girls were so happy to see each other again and it was so lovely to have Sophie with us once more. She has had such a lovely time at Nanny’s and has been so good throughout her visit. She didn’t cry once during her time there but I think the emotions from being separated from us for so long hit her later that evening when it was time to leave Mummy and Jessica on the ward and go and stay in the Ronald McDonald House with Daddy. Thankfully, she was much happier in the morning though and was in no hurry to leave the toys in the playroom at “the M house” and come up to the ward to see Mummy and Jessica!

Jessica loved seeing Nanny again on Thursday evening when she came up with Sophie, and enjoyed visits from Grandma, Grandad and Godmummy Katy yesterday. It is lovely to see her being able to move about more easily and sitting up and chatting away to everyone. We had the first mention of the “H” word on Thursday’s ward round with the doctors considering it for the beginning of next week, all being well. With our previous surgical stays having been at least four weeks, it looks like this time around we will hopefully be getting home a little sooner!