Post-Fontan recovery: Day 2 (PICU)

Jessica had a fairly stable day yesterday. She had regular bouts of chest physio and suction to help clear her chest and the secretions have lessened throughout the day and overnight. She came off the pacing wires during the morning and her heart rhythm has been good. She still has the pacing wires in situ for now but hopefully they won’t be needed again.


We’ve had quite frequent wakeful periods and Jessica has definitely been a little more aware of what is going on. She has tried to talk but can only mouth words while she has the ventilator in and has responded to what we’ve been saying to her with nods and shakes of her head. The wakeful periods have been very brief and she responds quickly to being given a little more sedative and muscle relaxant to get her settled again.

The plan for today is to try to extubate her and get her breathing on her own and woken up. Hopefully she will respond well to this.

Post-Fontan recovery: Day 1 (PICU)

Jessica had a good first night after her op. She had a few irregular heartbeats, so the pacing wires had to be put on. She also needed a bit of chest physio and suction to remove some gunk from her chest. Her sats have generally been very good – up in the high 80s and we have even seen them staying in the mid 90s for a few minutes! She was still quite blue when she first came down to PICU but her colour has rapidly improved since then. We are amazed by her colour, having never seen her quite so pink before!

Michael and I took turns to stay with Jessica overnight so we could each get a reasonable chunk of sleep (plus the periods of dozing in the chair next to her bed!) It was lovely to see how happy the consultant looked when he checked on her in the morning. He’s looked after Jessica before and she’s added a fair few grey hairs to his head on our previous PICU stays! To see him look at the monitors and beam at her was so lovely.

The plan in the morning was to hopefully try to extubate later that day. However, Jessica continued to have quite a lot of chest secretions and so the decision was made to keep her sedated and on the ventilator for the time being. She is coughing up the gunk quite well and has had regular chest physio to help with this. She has had the occasional wakeful moment and her instant reaction is to try and pull the tubes in her nose out when she starts to stir! Thankfully she’s not been successful in doing so at the moment.

Jessica had a little bit of swelling around her central line yesterday and needed to have another line put in. Overall she was pretty stable yesterday though. She’s on a whole host of medicines through all the various lines, and these will gradually be weaned off over time. At the moment, it’s still very much a balancing act to try and keep all her readings where they need to be.

Michael and I have been making sure we get fed and rested as much as we can while Jessica is sedated and settled. We both had a full night’s sleep at the Ronald McDonald house last night and feel much better for it! Sophie is also enjoying her sleepover at Nanny and has been having lots of fun with her cousins. We miss having her with us but it is good to be able to completely focus on Jessica at this time.

This morning, Jessica’s sats were a little lower. She had an ultrasound which shows there is a small pocket of fluid on the left side, which will hopefully get reabsorbed. Her left lung also looked a little deflated on chest X-ray although thankfully there is no sign of any chest infection. She’s currently lying on her right side to try with the pressure on the ventilator having been increased a little to help reinflate her lung. The pocket of fluid is small at present and will hopefully reabsorb, although if it increases, she may need to have another chest drain put in.

We’re all taking it minute by minute at the moment. Jessica has a tendency to throw curve balls in the way of recovery and I think the team are quite aware of this and prepared for little surprises! At the moment, the plan is to continue to keep her sedated and on the ventilator. She’s continuing to have regular chest physio to help with the chest secretions. Overall though, she is heading in the right direction and the team are happy with her progress so far.

Completing the Fontan

Jessica went down to theatre at about 9am this morning. She was an absolute superstar – smiling and chatting away to everyone right up to the point that she went off to sleep. We then had a long wait to endure while she was in theatre although we did receive occasional brief updates throughout the day.

Mr Viola, the surgeon, came up to the ward at about 4.30pm. Jessica was fine. Her surgery had been taken a bit longer than expected. They had done an internal Fontan procedure (inserting a tube into the heart itself) rather than an external one (making a conduit outside the heart) because there were veins in the way. He had also needed to do some work on Jessica’s left pulmonary artery. Because the surgery was a little more complex than anticipated and Jessica needed to be on bypass for quite a while, her lungs may struggle a bit at first with adjusting to her new circulation. However, he was happy with the blood flow through the Fontan and how Jessica’s heart was coping with it.


We finally got to see Jessica on PICU around 7.30pm. The consultant on PICU tonight has looked after Jessica several times in the past and it was reassuring for us to see a very familiar face! Tonight will be all about trying to get all her vital readings where the team would like them to be and keep them there. We are very aware of what a rollercoaster ride this can be!


Thank you all so much for all your prayers, love and support. We are so thankful that Jessica has come through her Fontan surgery and will be praying that her recovery will be considerably smoother than it has been with her past surgeries!

Preparing for the Fontan again

We’re back on Ocean Ward again ready for Jessica to hopefully have her Fontan procedure tomorrow. Today has been full of the usual rounds of pre-op tests which Jessica has once again taken in her stride. She is very chilled out about having her operation tomorrow and hopefully it will be third time lucky for her.

As hard as it has been to have to build ourselves up to this once more, it was wonderful to be able to spend Christmas at home before coming back in. Jessica and Sophie had a lovely Christmas and enjoyed spending Christmas Day at Grandma and Grandad’s house before having a nice quiet day at home yesterday getting to play with all the toys that Father Christmas (and everyone else!) brought them.

Today has felt like a big step out of that lovely Christmas bubble as we prepare to step once again on the hospital rollercoaster.  There have been some fun moments in our day though. Jessica had a visit from two very zany doctors – Doctor Easy-Peasy and Doctor Glow, the Giggle Doctors – which turned into an impromptu disco in her room. It was also lovely to see Nanny, Auntie Fizz, Tony, Tyler and Auntie Maxine who all came to visit (and take Sophie for her sleepover at Nanny’s). 

Jessica has been very brave today with all the pre-op tests. She knows what to expect by now and just gets on with it! To see how well Jessica copes with it all has helped us to stay strong for her. It was hard once again to have Sophie leave for her sleepover though. Hopefully it won’t be too long before our little girls can be together again.

Jessica is first on the list for tomorrow and, all being well, should go down to theatre around 8.45ish. As you can imagine, we are quite anxious about this next step although we are holding on to our faith that God has got this and that we are never alone in this journey. We know too that we are surrounded by so much love and support from our friends and family and we are thankful for that. Please do hold us in your prayers tomorrow as Jessica takes this next big step. We will update when we can.

Another new date for the Fontan

We now have a new date for Jessica’s Fontan and will be going into hospital on 27th December ready for her operation on 28th December. Hopefully it will be third time lucky for us! It also means that we will be able to enjoy Christmas together before we have to get back on the hospital rollercoaster.

Jessica is now back at school and enjoying being with her friends again. We got to see her in her class assembly this morning which was lovely. 

Hope that you all have a lovely Christmas and we will update again when we are back on Ocean Ward.

Back in limbo-land

Jessica’s Fontan has had to be postponed once again. We were told this morning that her surgeon, Mr Viola, is unwell and that PICU is also full at the moment which means that her surgery needs to be rescheduled once again.  As yet, we don’t know what the new date will be. In the meantime, it’s back home again while we wait, and back to making the most of normality.

Jessica is very disappointed about her surgery being postponed yet again. She had a good night and had started IV fluids a few hours before we found out about the surgery being postponed. She soon discovered that she could ride her IV pole like a scooter and that the most fun way of getting around the ward was to stand on it and let Mummy push her around. I was relieved that she’d only had her breakfast a couple of hours before and hadn’t had a long period of being nil by mouth before finding out, as had happened when her Glenn was postponed.

It is hard to have to go home and go through all the build-up yet again but it can’t be helped. We will continue to hold on to our faith that the surgery will happen at the right time for Jessica. We also found out after being told that Jessica’s surgery had to be cancelled that her bloods showed that her CRP levels were a little raised. This suggests that she might be brewing an infection. She and Sophie have both had coughs and colds recently (which they seem to be passing back and forth!) Hopefully having a little longer to wait will help her get rid of the winter bugs too.

We popped in to visit Godmummy Katy after leaving the hospital which helped to cheer Jessica up, before heading to Nanny's to pick up Sophie after her sleepover. It is lovely to have our family reunited again even though we know we have it all to come once again!

We will update again when we have been given a new date. Thank you again for keeping us in your thoughts and prayers so far. It helps so much to know that our little girl is surrounded by so much love.

Preparing for the Fontan

We’re back on Ocean Ward ready for Jessica’s Fontan tomorrow. It’s been a busy day full of the usual pre-op tests and getting ready for the surgery. Jessica has coped well with it all and has been enjoying collecting stickers for her sticker chart to show what a brave girl she is being! She and Sophie have also enjoyed playing together in the playroom.

 Nanny, Auntie Fizz, Ebony and Erin and Godmummy Katy have all been in to visit Jessica today. Sophie has now gone for her sleepover at Nanny’s. Jessica was absolutely adorable when it was time for Sophie to go; giving her sister big hugs and telling her to “make sure you tell me all about your sleepover when you come back.” This was the hardest point of the day for us but we are sure that Sophie will have a lovely time with Nanny while we focus on being with Jessica.

Jessica is second on the list for tomorrow. There is an urgent procedure due to take place first and we are not expecting her to go to theatre until around 1pm. We have also been warned that there is a possibility that Jessica’s surgery may have to be postponed if the first procedure takes longer than expected. Hopefully all will go well though and she will be able to have her Fontan tomorrow as planned.

Thank you to everyone for all your thoughts and prayers so far. We will let you know how we get on tomorrow.

A new date for the Fontan

We had a phone call this morning to let us know that Jessica’s Fontan has been re-booked for Tuesday 21st November. We will now be going in to Ocean Ward on Monday 20th ready for this. Jessica is very pleased to have a new date and to know how many sleeps she has to count down until her “sleepover” at the doctors’.

We had a lovely afternoon yesterday at Langley Park to help cheer Jessica up after her disappointment of her “sleepover” being postponed. It was nice for us to be able to enjoy some family time together, especially as Michael has had to be away so much lately. Hopefully we will be able to make the most of having some family time now that things are quieter for him on the work front!

Please continue to keep us all in your thoughts and prayers as we start to prepare once again for Jessica’s surgery and her stay in hospital. We will update again when we go in on 20th November. 

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.