Waiting for a new date

We should have been heading in to Southampton today. However, we have had a call this morning to let us know that Jessica’s surgery has had to be cancelled. Both Ocean Ward and PICU are very busy at the moment.

We’ve been here before. Thankfully this time we are not on the ward ready to go to theatre having been nil by mouth for several hours though! Jessica is disappointed that she will have to wait a little longer for her sleepover but it can’t be helped. I have been reminding myself that God’s timing is perfect. This is not the right time for Jessica’s surgery. It will happen at the right time for her. We’re okay with this decision.

I’m hoping that we will hear back tomorrow with a new date. It could be that we have to wait a couple more weeks.

For now though, it’s back to school, back to normality and back to enjoying all the little moments. We’re a little in limbo once again but we’ll be ready for the new date when it comes.

Thank you everyone for all your love, support and prayers so far. We will update again when we know more.

We have a date

We received a call from Southampton earlier today and now have a date for Jessica’s Fontan procedure.  Jessica will be going in to hospital on Wednesday 8th November and will have her surgery on Thursday 9th November. She knows that we now have a date for her “sleepover at the doctors” and is quite excited about it, bless her. Mummy and Daddy are rather less excited but it helps that Jessica is taking it in her stride!

We have arranged that Sophie will be staying with Auntie Fizz for a while and hopefully she will enjoy her stay with her cousins and not miss us too much.

Surgery aside Jessica is doing well at the moment. She is still enjoying school and going to Girls’ Brigade and ballet. She has started to tire a little more at ballet and will often sit out for part of the class. We also had our first (and second!) visit from the tooth fairy recently which Jessica was very excited about.

We will of course keep you updated as much as we can when we go into hospital. If you could keep us all in your thoughts and prayers over the coming weeks, that would be very much appreciated. 

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.