Five years into the journey

Five years ago today we were told that Jessica’s heart condition was so severe that surgery was unlikely to be an option.  It was, without a doubt, one of the hardest days of our life - all we could do was to pray for a miracle.  Although we didn’t grasp it at the time though, the consultant that day did give us that glimmer of hope we prayed so desperately for with his dismissive remark about in-utero surgery that ended up taking place just six weeks later. 

What a miracle it is to be five years on from that devastating day and to be able to watch Jessica running around with Sophie, doing all the things that other children of her age are able to do and lighting up our world with her sunny smile.  We thank God every day for these two wonderful daughters of ours and everything that has led us this far.  There might still be big steps to come but for now we will focus on the joy, the hope and the miracles that have got us this far and concentrate on making happy memories.

A few weeks ago, Jessica started Girls’ Brigade and on Sunday took part in her first parade service at church.  Seeing her there in her Girls’ Brigade uniform with the other children was such a proud moment for both of us – especially as Michael was part of the Boys’ Brigade at our church when he was younger.  Jessica looked very tiny walking in holding one of the bigger girl’s hands but she sat happily with the others throughout the service and went out to parade with the others after the service finished.  It is lovely to see how much she has enjoyed going to Girls’ Brigade so far – every Friday she tells me that she is “so ‘cited” about going.

We had a lovely weekend celebrating Mummy’s and Auntie Fizz’s birthday last weekend and Jessica enjoyed spending time with her cousins and we have also enjoyed lots of days out and about.  It is wonderful to see the world through Jessica’s eyes – she has such a fabulous imagination and it always adds an extra touch of magic to our days out.

We’re trying not to think too much about next month’s cardiac catheter procedure just yet.  Last week’s visit from the community nurse was very encouraging though as Jessica’s sats were around 85 which is the best they’ve been for quite some time.  Fingers crossed they stay up there for a while!

Significant decisions

The last couple of days have been quite significant with regards to planning Jessica’s future.  Yesterday we received confirmation that Jessica has been given a place at our local village infant school (our first choice) to start in September.  Today we received a call from Southampton to book us in for Jessica’s cardiac catheter procedure – the first step on the road to her Fontan procedure.  This is now booked in for Tuesday 7th June.  We will be going in the day before for all the various tests that need to take place before the cardiac catheter itself and will possibly need to stay overnight on the day of the catheter itself.

We don’t yet know how likely it is that Jessica’s Fontan will be planned before she starts school.  I suspect that this will depend on the findings from the cardiac catheter procedure and we will know more once that has taken place.  We have received a letter from Jessica’s consultant with more details about the findings from her last appointment which has confirmed that Jessica’s cardiac state is stable and whilst she has had episodes of low sats, these were mostly due to having a chest infection.  She’s certainly seemed well in herself over the last few weeks and we’ve had no concerns.

Last week saw the fourth anniversary of Jessica’s Glenn procedure – another reminder of just how far she has come.  Those four years seem to have gone by in the blink of an eye! With a little over four months left before Jessica is due to start school, we’re hoping the time won’t speed by too quickly though! In the meantime, we’ll enjoy getting out and about in the (hopefully) nice weather and try to make the most of not yet being restricted by school timetables!

Starting to think ahead

This month has felt like life has been sandwiched between hospital visits – with Jessica starting the month with a short stay in hospital due to having a chest infection, and the month ending with her cardiac check-up today. In between, there have been lots of happy moments – from the joy at seeing Jessica perform in her preschool Easter concert, to family days out and about, being back at Legoland again, enjoying Easter egg hunts at Cliveden and Black Park and eating far too much chocolate over the last week!

We met our new consultant Dr Szespesvary at this morning’s cardiac check-up. As far as we know, there doesn’t seem to be much change with Jessica’s heart function from her echo (although it is not so easy to tell given that the appointment was with a new consultant!) We have noticed over the last few months that Jessica is telling us more that she is “running out of breath” when we are out and about but we’re not quite sure whether she is actually tiring more or just better able to articulate it – she certainly seems to have plenty of energy most of the time. Her sats measured at 74 today but it was difficult to get a good reading and I am not completely convinced that this was an accurate measurement – her colour certainly seemed much better than I would expect if it was.

The plan at the moment is that Dr Szepesvary will meet with the team in Southampton and discuss the plan for moving forward with the next stage. As we already know, she will need to have a cardiac catheter to help provide more information about her current cardiac function and it may well be that that team decide that this will take place before our next planned appointment at Oxford, which is in four months’ time. Dr Szepesvary also mentioned the possibility that the Fontan may take place before Jessica starts school in September.

The mention of the Fontan possibly taking place in the next six months has left us feeling quite anxious and has brought the reality of it all back home again. As Michael has reminded me though, the team has not yet decided that this will be the case – the only things we know for sure at the moment are that the team will be discussing Jessica in a couple of weeks’ time and that we have a cardiac check-up booked for July. Other than that, we won’t know any more until the team meeting.


We’ll keep you updated on this when we know more.

Back home again

Jessica is now back home after spending a couple of nights in hospital. She needed oxygen the first night and her temperature went back up again so was given IV antibiotics (and was very brave about having the cannula put in for these). By Tuesday afternoon, her sats were staying up for longer and longer without the need for additional oxygen (even hitting 87 for a brief period mid-afternoon before dropping back down to around 78-80 which is much more normal for Jessica) and it was good to see her much more like her normal self by Wednesday morning when we were finally discharged from the hospital.

We have a check-up with the paediatrician at Wexham Park next week and a cardiac check-up at the end of this month so hopefully Jessica’s sats will stay up and all will go well with these. In the meantime, she is enjoying having godmummy Gillian here to stay for a few days and being back home with Sophie.


Thank you to everyone for all your well wishes over the last few days. All being well, I’ll update again once we’ve had our cardiac check-up.

An admission to hospital

After a good start to the year, it was a slight shock at the routine community nurse visit to discover that Jessica’s sats had dropped. They normally are around 80, but were down around 74-76. The cardiac liaison nurse wasn’t too concerned as Jessica seemed well otherwise and we decided that I would recheck them at home later and the community nurse would visit again in two weeks. The sats were back up when rechecked and all seemed well.


When the community nurse visited again at the end of last week, Jessica’s sats were down again, but she did have a cold and a slight cough which was a possible reason. Once again, after discussion with the cardiac liaison nurse, we decided that I would monitor them at home over the weekend and the nurse would call back today. Over the weekend, they picked up once more and when the nurse phoned me this morning, I reassured her that all seemed fine.


Ten minutes later, I received a phone call from Jessica’s preschool to say that she was quite subdued and looked blue, as though she had been playing outside in the cold and needed warming up – except she hadn’t wanted to go outside. I headed straight over and agreed that Jessica did look bluer than normal. In view of the reduced sats over the last couple of weeks, I called our community nurse and asked if we could come up to the ward and get Jessica checked over.

Open-access is a wonderful thing at times like this. Within an hour of preschool having called me, we were on the ward, with Jessica being given oxygen. She was also running a temperature, which thankfully has dropped since she had some paracetamol and so far has stayed down. She was a very brave girl while the doctors were taking blood from her (never an easy job and always requiring multiple attempts) and didn’t cry at all, bless her. She’s also coping well with having an oxygen mask on her face – helped, I think by the fact that Daddy sleeps with a CPAP mask on due to having sleep apnoea. Jessica keeps telling me that she has “a mask just like Daddy has” which has been very helpful when trying to make sure she keeps it on!

It’s hard for Sophie, bless her, who was quite happy to come and sit with Jessica for a while but then couldn’t understand why Mummy wasn’t coming home with her and Daddy – and hard for me too to have to be without one of my babies overnight. The plan for now is to continue to monitor Jessica overnight, hopefully try and get her back off the oxygen and if she spikes a temperature, to take blood cultures and start her on antibiotics if needed.

Hopefully we’ll be back home again as soon as possible. I’ll post another update in the next day or so.

Getting ready for Christmas

This time of year always brings back memories of Jessica’s first Christmas.  Putting up the decorations brings back memories of Michael helping put them up on Ocean Ward while Jessica was in theatre having her Norwood procedure.  Putting together the little wooden tree that was Jessica’s very first Christmas tree instantly transports me back to that moment beside her cot in PICU when I put it together for the first time.  Here we are, four years on, and looking forward to being able to spend Christmas at home together as a family, knowing how lucky we are to be able to do so.

There have been some magical moments in the run-up to Christmas.  The festive season started off with the Families of Ocean Ward Christmas party where Jessica and Sophie got to see Father Christmas and had fun joining in with the party games and dancing.  Jessica loved having her face painted and was very excited to win a prize in one of the games too.

We had a magical day out at Legoland where we got to see Father Christmas yet again as well as enjoying some of the rides without any queues.  The Christmas lights were so beautiful and the visit to Father Christmas was so well done – we were greeted by elves and led through a maze of twinkling Christmas trees all the way to Father Christmas’s cabin where Jessica responded to his question about what she would like for Christmas with “a present!”  I think that one can definitely be managed!

Jessica enjoyed taking part in the Christmas concert at preschool and it was lovely to see her joining in with the singing and the actions.  She has really come on over this past year – she was so shy during the Easter concert and it was a joy to see how confident she was this time around.  

This year, Jessica is much more aware of the build up to Christmas.  She was so excited when she came downstairs one morning last week and saw the Christmas tree – “It’s Christmas in our house!” – and she has been frequently asking “how many sleeps until Father Christmas brings the presents?”  It’s wonderful to re-live the magic of Christmas all over again through her and Sophie’s eyes and we are looking forward to enjoying Christmas together as a family.

Wishing you all a very Merry Christmas – and sharing a Christmas greeting from Jessica and Sophie: