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.

Thursday, 18 October 2018

Six months on

It has been six months since Jessica died. Coming up to the six-month milestone has been a very emotional time for us all. We have had some of our hardest days since Jessica’s funeral. This year’s Little Hearts Matter autumn memorial walk took place on 13th October. It felt like an appropriate way to spend the half-anniversary of Jessica’s last day. Sophie enjoyed decorating paper hearts to hang on the LHM tree and planting bulbs around the bench. It was also lovely to hear how popular Jessica’s heart operation books have been and to know that her story is still helping others.

Louise, Michael, Sophie and Thomas at the Little Hearts Matter tree in the National Memorial Arboretum

This morning, we received a letter from St Peter's hospital informing us that they are carrying out an investigation into the care Jessica received shortly before her death. This process is expected to take about four months. One of the many questions that we have asked ourselves since Jessica died is whether she would still be here had she not been discharged that day. Perhaps this is a question which may now be answered. The findings from the investigation won't bring Jessica back of course, but perhaps there are improvements in care which could be made as a result.

We have also spoken again to the team at Southampton and are hoping to meet again with them to discuss the findings of Jessica’s post-mortem. The information we received was very limited and we are hoping they can obtain a few more details.

Louise has continued to blog about life after Jessica and our grief journey over on her blog and has found this helpful. Last week, her blog won a Brilliance in Blogging award in the Inspire category.

This weekend Louise's brothers and nephews are running the Great South Run in memory of Jessica and fundraising for Little Hearts Matter. We will be going along to cheer them on. If you would like to support them, you can find their JustGiving page here.

The Little Hearts Matter running vest with a picture of Jessica

Thursday, 6 September 2018

Jessica's 7th birthday

Today is Jessica’s 7th birthday and the 7th anniversary of her first open heart surgery. The first of our big girl’s birthdays without her. It has been a very emotional day, especially as it was also Sophie’s first day at school. Jessica would have been so proud that her little sister was going to school with her and so excited about it also being her birthday.

Nanny and Auntie Loraynne came up for the day and we had a little birthday celebration for her at her forever bed at GreenAcres. I made her a “Kerry birthday cake” modelled on her favourite toy and Sophie blew out the candle as we sang Happy Birthday to Jessica. I am sure Jessica would have loved her cake. She adored her Kerry and she absolutely loved cake. "Cake" was one of the first words she learned to sign as a baby, along with more and please!

A photo of Jessica at GreenAcres with her "Kerry cake"

This first birthday has been a hard one. We miss our little girl so much and even more so on days like today. Thank you so much to everyone who has wished our beautiful girl a happy birthday today and those who have been keeping us in their thoughts and prayers.

Tuesday, 14 August 2018

Four months on

It is four months today since Jessica died. Four months since our world was completely shattered by her sudden passing. Life has been such a rollercoaster over these past few months and especially so in the last couple of weeks with the arrival of baby Thomas. Thomas’s arrival has brought us so much joy but many moments of sadness too that Jessica never got to meet him. She would have been so thrilled to be a big sister again, especially as she was hoping for a baby brother.

Mummy, Daddy, Sophie and Thomas with Jessica's cushion

We finally got the post-mortem results on the day Louise went into labour with Thomas. The cause of Jessica’s death was stated to be a congenital heart defect, with secondary factors being viral infections and liver changes (which would have been due to her Fontan circulation). None of these really explain why she passed away quite so suddenly though. We can rule out some of the things that we had wondered about, such as a blood clot or aneurysm. One of the possible explanations that we’re left with is that Jessica’s sudden cardiac arrest may have been caused by an arrhythmia. This is something that wouldn’t have been picked up on the post-mortem as it could only be detected while her heart was still beating.

Before we received the post-mortem results, we had a meeting with the A&E consultant who looked after Jessica on the night she died. We wanted to understand a little more about what happened the night she died – particularly as it looked like Jessica still had a heart beat when the paramedics arrived but that she didn’t have a shockable rhythm. We were told that although the monitor did pick up residual electrical activity, Jessica had no pulse when she arrived on A&E. Her heart had already stopped pumping at that point.

We received the results of the genetic tests a few days before the post-mortem results. These tests showed that Michael carries the same deletion that Jessica had and therefore this deletion had no significance with regards to either her heart condition or her death.

Now that we have the post-mortem results, we have been able to register Jessica’s death, which we did a few days after registering Thomas’s birth. We took Thomas to GreenAcres to visit his big sister for his first trip out. As you can imagine, it was a very emotional visit.

Daddy, Sophie, Mummy and baby Thomas with Jessica's cushion at Jessica's forever bed

Sophie is enjoying being a big sister to Thomas. She is very loving with him and tells us that she loves her baby brother and is proud of him. She had a good role model when it came to how to be a big sister and it certainly seems like she is following in Jessica’s footsteps in that regard. We are sure that Jessica would have also been an amazing big sister to Thomas too. It makes us so sad that we will never get to see it though.

Sophie and Thomas with Jessica's photo cushion in the background

We are hoping to meet with the team in Southampton at some point to discuss the post-mortem results and go through some of the questions we still have. We know that we are unlikely to get any more answers but I think it would still be helpful for us to have that discussion.

Monday, 18 June 2018

Learning a little about Jessica’s genetics

We had a phone call from Southampton a couple of weeks ago. They had been in contact with Dr Fowler, the pathologist, with regards to some genetic analysis that had been done on Jessica. This showed that Jessica had a small area missing from one of her chromosomes.

Humans normally have 23 pairs of chromosomes in each of their cells. These pairs are numbered 1-22 in order of size, with the two sex chromosomes (XX for females and XY for males) making up the 23rd pair. One half of each pair is inherited from your mother and the other half is inherited from your father. The small area that Jessica was missing was on the short arm of one of the chromosomes in pair 11 and is called a 11p15.4 deletion.

Normal human female chromosomes

Whilst it was unlikely that this deletion had any impact on what caused Jessica’s death, Michael and I were referred to the geneticist at Oxford for a blood test to see if either of us carry this mutation. As we hadn’t received an appointment for this when I went for my antenatal appointment last week, it was chased up by the obstetrician. It turns out that there is actually quite a long wait normally to see the geneticist but me being pregnant has helped significantly speed things up in this regard! This morning, we had an appointment at the John Radcliffe for the genetic test.

The geneticist doesn’t think that this very small deletion is significant either with regards to Jessica’s heart condition or her death. There is a rare neurological condition associated with the deletion but this only occurs in adulthood and the deletion would need to be on both chromosomes in the pair. Jessica would therefore have been a carrier for this condition. It is likely that she inherited this from one of us but it is highly unlikely that we both would carry this deletion. In terms of the post-mortem results, she feels that it is, in her words “a red herring”.

Our impression is that this test is being carried out just as part of gathering as much information as possible from Jessica’s tissue samples. We had our blood tests done this morning and it will take about six weeks before the results come back from these. This also means that we are unlikely to receive any results from Jessica’s post-mortem before this time as well. We don’t yet know if there have been any other results from the post-mortem which may shed any light as to what caused Jessica’s sudden death. We will update again when we know more.

Saturday, 19 May 2018

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.

Tissue paper flowers made by the Girls' Brigade
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.

Jessica's casket arriving at church

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.

Jessica's casket at the front of the church
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.

Nanny saying goodbye to Jessica
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.

Michael and Sophie saying goodbye to Jessica as her casket arrives 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.

Jessica's casket being carried through the woods at GreenAcres
Photo taken by Charlie Pugh

Sophie with bubbles at GreenAcres
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.

Sophie sitting on the bench in "Jessica's garden"

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

Wednesday, 2 May 2018

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

Jessica playing the drums at Chessington

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.


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.

Monday, 23 April 2018

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.

Jessica and Sophie having a cuddle in Langley Park

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.

Sophie walking through GreenAcres Chilterns

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.

Saturday, 14 April 2018

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.

Jessica wearing a butterfly headband

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.

Sophie, Mummy, Daddy and Jessica sitting in a garden on holiday

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.

Jessica sitting in her buggy and smiling

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.

Jessica snuggling her Kerry dolly

Monday, 19 February 2018

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.

Jessica out and about in the buggy

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.

A very smiley Jessica having an echo

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.

Sophie, Mummy, Daddy and Jessica with Jessica pointing at the scan picture Mummy is holding

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.

Monday, 15 January 2018

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!

Jessica with no more tubes on her face!

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.

Jessica and Sophie in their Girls' Brigade uniforms with Miss Melanie

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.

Saturday, 13 January 2018

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.

Jessica riding on her IV pole

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 and Sophie on the ward

Jessica, Sophie and Nanny sitting on Jessica's bed

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!

Jessica playing the toy piano on the ward

Thursday, 11 January 2018

Post-Fontan recovery: Day 13 (Ocean Ward)

It has been amazing to see the changes with Jessica over the last couple of days. She’s gone from being restricted to her bed and chair and having lots of tubes and wires in high care to being able to move about the ward with most of the tubes and wires removed. Yesterday saw another big reduction in the tubes and wires. Jessica came off the oxygen altogether in the morning and had the remaining chest drain removed in the afternoon. We’re just left with one cannula for her heparin and an NG tube.

We were told last week that Jessica would go on warfarin after her chest drain was removed and the heparin stopped. The decision to put her on warfarin was due to her having sluggish flow in her inferior vena cava (the main blood vessel going from the body to the heart). However, the echo she had a couple of days ago shows improved blood flow and so the team have decided to go for aspirin instead. This will be much easier to manage at home than warfarin! The heparin needs to continue until she’s had three doses of aspirin and then that cannula should be able to come out.

We had hoped that her remaining cannula would hold out a couple more days just until the heparin finished. Unfortunately it stopped working last night and had to be replaced. It had lasted well though given it was put in while we were still on PICU. Fingers crossed the new one keeps working and we won’t need any more cannulas put in now.

Jessica has been enjoying being able to get around the ward and visit the playroom again. She spent most of yesterday afternoon sleeping as she was sedated for the chest drain removal. She wasn’t very impressed that she slept through dinner time and missed her fish fingers and chips though! Nice to see her showing an interest in food again. We did have some food in the fridge for her, so she didn’t go hungry!

We are looking forward to Sophie coming to the hospital today. It has been more than two weeks since our girls were last together. It will be lovely to have our little family back together again.

Wednesday, 10 January 2018

Post-Fontan recovery: Day 12 (Ocean Ward)

Jessica had a really good day yesterday. She had a lovely morning and enjoyed making Frozen characters out of Lego during her school session in the morning and having a visit from Godmummy Katy just before lunch. Her appetite is starting to improve and she is beginning to show an interest in food again.

Jessica making Frozen characters out of Lego

She wasn’t too keen on having her nasal prongs changed over so she could move off the opti-flow oxygen and on to normal oxygen. Her ECG wires have all been removed as she no longer needs continuous ECG monitoring. Having the tubes and wires reduced a little more meant that Jessica was able to get up and go for her first walk around the ward pushing her drain, heparin and oxygen around with her in a trolley. She made a beeline for the playroom. It made us laugh that the one toy she wanted to play with there was another trolley!

Jessica with her trolley in the playroom

We were quite impressed by how speedy Jessica was getting around the ward. I almost had to run to keep up with her! A trip to the playroom and back was quite enough for a first walk though and she was quite happy to get back into her bed when we returned to high care.

Mummy and Jessica in the playroom

Being able to get up and about was a big step in itself but the big steps forward didn’t stop there. Later that evening, Jessica was moved out of high care and into Dolphin bay. Another step closer to getting home again. It meant that Mummy was able to sleep next to her bed (no more doing shifts with Daddy so that one of us can sit Jessica overnight). It also means that we will be able to have Sophie with us again soon, as she can stay with Daddy in the Ronald McDonald house while Mummy stays on the ward with Jessica. Hopefully she can come up to the hospital tomorrow. We’re looking forward to seeing our baby girl again after two weeks of being apart.

Tuesday, 9 January 2018

Post-Fontan recovery: Day 11 (Ocean Ward)

It was back to school for Jessica yesterday! We had a visit from the teacher at the hospital school in the morning who then did a reading session with Jessica in the afternoon. She’ll be dual-registered at the hospital school (along with her normal school) while she is in hospital which will count as school attendance during this time. There is a classroom up on G level which children can go to if they able; otherwise the teachers can come to the bedside and do a couple of teaching sessions each day.

Jessica with the Pets as Therapy dog

Jessica had fun in the morning doing some beading with the play worker and also got to meet Archie, the Pets as Therapy dog who came for a visit. She was thrilled to receive a couple of parcels in the post in the morning with some sweets, colouring/activity books and hand-made cards from everyone in her Girls’ Brigade company.

Jessica with her cards and sweets from her friends at Girls Brigade

Recovery-wise, Jessica continues to make gentle progress. She manage to eat a little more yesterday although we weren’t very impressed when the hospital catering company failed to provide any supper for her ward. It took three phone calls from the nurses before they finally sent someone up with snacks and sandwiches at 7.30pm. Hopefully today’s meals will arrive as normal!

At the moment, the focus is on continuing to wean Jessica’s oxygen down and to keep encouraging her to eat and drink a little more.

Monday, 8 January 2018

Post-Fontan recovery: Day 10 (Ocean Ward)

Jessica is continuing to make small improvements every day. Her oxygen requirement is getting lower and we’re hoping that she’ll be able to move off the Optiflow and on to normal oxygen tomorrow. The amount of fluid draining from the remaining chest drain is getting less although it’s still too much for the drain to come out just yet. She had a much more settled night last night and doesn’t appear to be having any more side effects from the morphine being stopped.

Jessica and Grandad playing with the Lego

Yesterday was mostly about trying to encourage Jessica to eat a little more. She’s now taking more of her medicines orally (instead of down her NG tube) and is managing to eat very small amounts (mostly strawberries and grapes!) We had a lovely visit from Grandma and Grandad yesterday afternoon and Jessica enjoyed seeing them. Grandma read her a story and Grandad played with Lego and playdough with her. I’m not sure who was having more fun with the playdough though – Jessica or Grandad!