The wait continues…

Since our last update, we’ve been waiting to hear about the date for Jessica’s next surgery. We have now had a call but the proposed date (15th September) coincides with the start of one of Michael’s busiest periods work-wise. This was something that we mentioned to the surgeon at Jessica’s appointment back at the start of the month, and we were reassured that although the surgery was needed, it was not urgent. We are hoping therefore that we can hold off for a few more weeks so that Michael can focus on being there for Jessica without trying to juggle too many balls on the work front too.

We are now waiting to hear again from Southampton with regards to a different date for the surgery. In the meantime we have been focusing on enjoying family moments over the summer. It has been lovely to be able to enjoy the whole of the summer holidays. We’ve had weekends away, spent time with family and enjoyed lots of days out. Living in limbo has been hard at times but it has also meant we’ve focused on enjoying the moment as much as possible.

Jessica had her routine check-up with the paediatrician at Wexham Park yesterday. She has managed to gain some weight since her last check with the community nurse and is now up to 16.7kg which is encouraging.


Earlier this month, Jessica’s story was featured in the Daily Mirror, helping to raise awareness of congenital heart defects and the work of Tiny Tickers in helping to improve early detection. It is amazing to think that next week she will celebrate her 6th birthday and start Year 1.

Discussing the next surgery

Today has mostly been spent in Southampton, where Jessica has spent time on Ocean Ward, looking around and having an echo done. She remembered the ward from her stay last year for her cardiac catheter procedure and is very excited at the prospect of having a “sleepover” at the doctors.

We’ve spent time over the last couple of weeks preparing Jessica for going to hospital for surgery. Louise has written and illustrated a book to help show Jessica what will happen on this next step. We’re waiting for a printed copy to arrive but Jessica loves reading the ebook version. To her, this big step on her journey is an adventure.

We didn’t get to meet Mr Viola, who will be Jessica’s surgeon, today as he was carrying out emergency surgery. We did meet one of his surgical colleagues to discuss Jessica’s next operation. The Fontan procedure completes the separation of deoxygenated blood returning to the lungs and the oxygenated blood which needs to be pumped by the heart to the body. Normally, the heart pumps the deoxygenated blood to the lungs before it then returns to the heart to be pumped around the body. With a Fontan circulation, the blood goes directly to the lungs without having to be pumped through the heart first.

The Fontan procedure connects the inferior vena cava (the vein carrying the blood back to the heart from the lower half of the body) to the pulmonary artery which goes to the lungs. This can be done in a couple of ways – either by creating a conduit outside the heart (external Fontan) or by creating a wall within the heart (internal Fontan). The external Fontan is the technique usually performed by surgeons at Southampton and this is what they will aim to do with Jessica.

For the Fontan circulation to work, the blood pressure in the lungs needs to be lower than that in the body and the blood flow needs to be unrestricted. Jessica’s cardiac catheter procedure last year indicated that her pressures are suitable for the Fontan. She does however have a small left pulmonary artery. It may be possible to enlarge this during surgery if needed.

All being well, this should be Jessica’s last planned surgery. As this procedure has only been around for a couple of decades, long-term prognosis is still a little unknown. We were told that 10 year survival rates post-Fontan are around 93% and 20 year survival rates are around 80-90%.

We are now waiting to hear from the surgical co-ordinator who will contact us with a date for the surgery. At the moment, we don’t have a time-frame for when this is likely to take place – it could be in the next month or it could be in a couple of months’ time. We will update again when we know more.

Anticipating another surgery

We spoke to the cardiac liaison nurse at Southampton this morning. Jessica was discussed at the team meeting yesterday and the team have decided to put her forward for Fontan completion. It is likely that the surgery will take place towards the end of the summer.

We had anticipated that this would be the most likely outcome of the meeting but it’s still a bit of a shock to the system. We’ve gone from expecting to be another year away from surgery to being a few weeks away. Although we know that it has to happen at some stage, we’re still very scared and anxious. 

The last couple of years have seen big changes for us with regards to key professionals involved in Jessica’s care. The surgeon who carried out Jessica’s previous surgeries is now working in America and our lovely consultant at Oxford, Dr Archer, retired at the end of 2015. Although we know that the team in Southampton is excellent and Jessica will be in very good hands, it does make it a little more scary for us to be doing this all over again with a new team of doctors.

I will update again when we know more. If you could keep Jessica in your prayers, it would be very much appreciated.

Back in limbo

Yesterday marked six years since the in-utero surgery that gave us hope for Jessica's survival. Six years on, I watched her and Sophie at the dress rehearsal for their ballet show and got a bit tearful. How amazing it is to be six years on and to see Jessica dancing on stage and living life to its fullest.

Today I hit earth with a bump again at Jessica's cardiology check-up. As I had suspected, Jessica has lost weight since her last appointment. Her sats were also lower than they usually are. Our consultant has decided that she would like to discuss Jessica at the next team meeting and consider whether her Fontan needs to take place sooner rather than later.



Jessica's weight has been an ongoing concern over the last year or so. We have had brief periods of weight gain followed by weight loss and then small gains but it's mostly hovered just under 16kg. Energy-wise she's being doing well on the whole other than having a virus earlier this month which left her exhausted for a couple of weeks.




It seems we are back in limbo again, waiting for a plan and wondering whether we now have the next surgery looming on the horizon. The team meeting is a week on Monday so it will be a couple of weeks before we know more.

It recently struck me again how perfect the timing of that very first surgery six years ago was and how everything just happened to be in place at exactly the right time. I suspect that if we were in the same situation today our journey would be quite a different one. I've been reminding myself that God's timing was perfect back then and to have faith that the next stage will also take place at the right time for Jessica. We will of course keep you updated as to what the plan is likely to be but any prayers for the next step on Jessica's journey would be very much appreciated.

Six years ago today...

Six years ago today, we were told that Jessica’s heart condition was so severe that post-birth surgery was unlikely to be an option. Today, I watched her taking part in her Girls’ Brigade Explorer Sports’ Day. She usually trails way behind her peers in races but she managed to come third in the obstacle race and was in the lead at one point. A huge achievement for a little girl with only half a working heart!

I felt quite emotional watching her running around with her friends whilst remembering that day six years ago. Remembering how devastated we were, how we clung to our faith and prayed for a miracle. And here we are, six years on, feeling so very blessed to be able to watch Jessica grow, and thrive, and have fun with Sophie and with her friends.

It’s been a long time since my last update on this blog. Life has been ticking along fairly normally in that time. Jessica has been at school full-time and enjoying it. She is doing incredibly well. She’s in the top half of the class for reading and maths and has been awarded her Gold Reading Raccoon certificate for reading 100 books. It is lovely to see this whole new world of books becoming unlocked for her and seeing how much she enjoys reading.

Health-wise, she’s doing well on the whole. Her sats are mostly still in the high 70s/low 80s and she still has a reasonable amount of energy, although her exercise tolerance has reduced since last year. That said, she still manages a full week at school, finishing up with both ballet and Girls’ Brigade on a Friday night and copes well with both activities! She finds it a challenge though to keep up with Sophie who often runs ahead of her big sister. Long walks are also more difficult for Jessica now. We have started taking a buggy out on days out again. Jessica now has a Maclaren Major Elite special needs buggy which is much more suitable for her.

The current plan is to try and get Jessica to 18kg before her Fontan takes place. My impression is very much that the team are keen for it to happen as soon as she hits 18kg. If she continues along her current centile line for weight, she’ll hit 18kg in about a year’s time. We’re therefore anticipating at present that we are probably about a year away from the Fontan all being well. Jessica is due to see her consultant again for a heart check-up at the end of June and hopefully all will be well at that appointment.

In the meantime though, we’ll just continue to enjoy normal family life and making the most of our time with our two girls.

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.

Weighty worries

Jessica’s oxygen sats and weight are checked regularly at home by our community nurse.  Over the last couple of visits, we have noticed that Jessica is not really gaining weight and her current weight is much the same as it was at the end of last year, which has prompted a referral to the dietitian.  We were hoping that looking at the bigger picture at Jessica’s cardiac check-up (and comparing her weight across the appointments which are more spaced out than the community nurse visits) would reassure us, but Jessica’s weight today is less than at her previous appointment (and is the same as the one before that, back in November last year).  

We have, however, been reassured that this is quite a common concern in cardiac children and that hopefully with some extra dietary fortification, Jessica will start to gain weight again.  We have always been aware of the fact that she does need more calories than other children her size because her heart has to work harder and have always used full-fat milk, butter and cheese to help with this but will be trying harder to add those extra calories in where we can! 

On the plus side though, Jessica seems to be doing well heart-wise – she has plenty of energy, and her sats today were within her usual limits.  She is getting taller and seems well in herself which is all reassuring.  

Ideally the team would like her to be around 18kg when her next surgery takes place – with her weight staying around the 15.2kg mark at the moment, there is still quite a way to go on that front! It will be good to speak to the dietitian and have a plan in place for helping Jessica get there.

Weighty worries aside, we are enjoying the start of the summer. Jessica’s last week of preschool was quite an emotional time (mostly for Louise!) and we are hoping the summer doesn’t go by too quickly before Jessica starts school in September.  We have been planning our family challenge for this year – travelling from Land’s End to John O’Groats by public transport which we will be taking on around the middle of next month.  We are hoping to raise money for Little Hearts Matter through taking on the challenge and have set up a fundraising page – if you would like to support a charity which is very close to our hearts and sponsor us for our challenge, that would be lovely!   We will let you know how we get on with it!