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! 

A weight lifted

Last week we had a letter from Jessica’s cardiology team informing us that they had discussed the results of the cardiac catheter and were not planning her next stage surgery for another year or two.  It feels like a weight has suddenly been lifted off our shoulders and we can now look forward to the summer without the fear of the next surgery hanging over us.  

It’s been a busy month since the catheter took place.  We had a lovely week away at Butlins in Minehead which the girls enjoyed very much and it was lovely to see how Jessica has suddenly become more confident in the swimming pool.  We’ve had day trips to Legoland and Beale Park, been to see In the Night Garden Live, watched Jessica taking part in her preschool sports’ day and her Girls’ Brigade company display, and celebrated the fifth anniversary of the in-utero surgery which gave us that glimmer of hope back when I was pregnant with Jessica.  How amazing it is to be five years on from that point and to see Jessica doing so well!

We’ve had a couple of hospital appointments this month.  Jessica had a referral to the audiology team as we had some concerns over her hearing.  She has been diagnosed with glue ear.  Thankfully at present, it isn’t having enough of an impact on her hearing to need any further treatment but will be checked again in a few months’ time.  Jessica also had her regular eye check-up and her vision is still good with her glasses so just another check-up needed at the end of the year.

Jessica is now in her last two weeks of her time at preschool (sob!) and has been visiting her new infant school. She is very excited about the prospect of starting school (especially as her best friend is in the same class) and her new teacher seems very nice.  We’re in the process of putting health care plans together ready for the start of school and making sure that we give as much information as we can about Jessica’s heart condition and how it affects her day-to-day.  Her preschool have been excellent with regards to this and our conversations with school have been reassuring so far on this front too.  In the meantime though, we’ll been making the most of the summer before our big girl takes her next big step into the wider world.