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:

The end of an era

Jessica had her cardiac check-up yesterday and her last appointment with her wonderful consultant Dr Archer, who is retiring at the end of the year.  We were very sad to say goodbye to Dr Archer as he has been there since the very start of Jessica’s journey, from the day she was diagnosed, and was also a key part of the team who performed Jessica’s in-utero surgery.  He has been a huge part of this journey for over four years and we are immensely thankful for everything that he has done for Jessica that has helped her to be here today.

To start again with a new consultant next year is quite a scary thought – we don’t even know yet who our new consultant will be.  We keep reminding ourselves though that there are still people in the teams at Southampton and Oxford who have known Jessica since she was a baby and that whoever takes over from Dr Archer will be well informed about Jessica.  Although the uncertainty that comes with change is unsettling, holding on to our faith and remembering that God is always constant and bigger than all of this has helped hugely.

Thankfully, all was well with Jessica’s check-up yesterday – her heart function is still good and her sats remain in the low 80s.  She is growing and gaining weight nicely and there are no plans to move forward with regards to planning her Fontan procedure as yet.  The team are happy to continue to monitor her with the next check-up due around late March/early April.

It was very reassuring to be told that Jessica’s heart function remains stable – we had been a little worried recently as Jessica had been much more tired since starting back at preschool, and has been asking to go in the buggy when out and about a lot more.  Whilst we knew that her tiredness was probably due to being back at preschool (especially as she is now going three mornings a week instead of two), her heart condition makes it more difficult to be sure whether it is just “normal” back-to-preschool tiredness or an indication that her heart is not working as well as it was.  Since the half-term break though, she has picked up a little more energy-wise, which is also encouraging.

Jessica also had her eye check-up last month and whilst her eyesight is fine with her glasses on, she is now at an age where the team there would be thinking about offering surgery to help correct her squint.  The surgery would be mostly cosmetic rather than being necessary to improve Jessica’s eyesight, and does not need to be done at a particular age so we can wait or decline if we wish.  We have discussed it with Dr Archer who has advised that if we decide to go ahead with this procedure that it should be done at either Oxford or Southampton and that we should wait at least six months after the Fontan procedure if we want to hold off until she is older. We have another eye appointment in February and will discuss it further then.

Hospital check-ups aside, we have had a lovely couple of months – Jessica has enjoyed having a pirate day at preschool, having her face painted at Apple Day, celebrating Sophie’s second birthday and visiting our “favourite Legoland ever” for the last day of the season.   We have visited our local infant school and filled in the application form for Jessica to start school next September.  Our little girl is growing up so fast – she is becoming more and more independent every day and often tells us “I can do it myself.  I am a grown up!”  

Happy 4th birthday, Jessica!

It is amazing to think that this time four years ago, Jessica was having her first open heart surgery and today our little miracle has celebrated her 4th birthday. She has been counting down the number of sleeps for the last few days and was very excited first thing this morning when she saw her birthday card read out on CBeebies.  We had a party this afternoon with some of Jessica’s friends and family and she had a wonderful time enjoying the sunshine in Grandma’s garden and opening lots of cards and presents!

Tomorrow morning, Jessica will be starting back at preschool again, and will be going for three mornings a week.  We have enjoyed the last few weeks of the summer holidays – spending a few days staying with Auntie Fizz and cousins Ebony and Erin, blackberry picking in Grandma’s garden, picnics in the garden, treading grapes to help Grandma make wine and having fun doing crafts at home during the rainy days.  We have been focusing on potty training over the last few weeks and have been so proud of how well Jessica has done with this.  

Jessica has enjoyed being able to go back to her “favourite Legoland ever!” now that our preschool passes are valid again.  It is so lovely to watch her and Sophie wandering about hand in hand as they explore the park and to see how close they are.  Bedtime is particularly beautiful as Jessica always has to give Sophie a big cuddle and kiss and say “I love you Sophie” before she goes to sleep.  Sophie’s response of “luz you Jess-sha” is adorable too!

We had a visit from the community nurse last week and Jessica’s sats were back up to 83% which is really good.  The results of the chest X-ray have come back and all was fine with that so last month’s dip was hopefully just a little blip.  We are still waiting to hear when Jessica’s next cardiac check-up will be as this month’s appointment was cancelled.  

It is amazing to see how well Jessica is doing and to see how far she has come.  This past year has been the first one without any hospital admissions and it has been amazing to just enjoy a normal, happy family life.  A huge thank you to everyone who supports us on this journey – the wonderful team on Ocean Ward and PICU whose skills got Jessica through all her surgeries and the recovery period afterwards, and all our friends and family whose love, support and prayers have helped get us this far.  We feel incredibly blessed to be here today, watching Jessica celebrate her 4th birthday and enjoying every minute of it.

Little challenges

The last few weeks have been all about completing various challenges.  We’ve been hunting for the different Shaun the Sheep sculptures around London and Bristol and have managed to find all 120 of these.  Jessica has loved finding all the different sheep and is quite addicted to the iPad app for finding them – she loves to flick through the pictures of all the sheep we have seen and name them.  

We had a lovely family holiday on the Isle of Man where we managed to find our final Olympic gold postbox and complete the challenge that Jessica’s godfather Bryan set us nearly three years ago.  It is lovely to look back on all the photos of the different postboxes and see how our family has changed and Jessica has grown up in that time.  Jessica enjoyed her holiday very much – she had fun building sandcastles on the beach with Sophie and enjoyed going on the mountain train, steam train and horse-drawn tram.

We had a community nurse visit the day after getting back home again and were a little concerned that Jessica’s sats were lower than usual at around 74-75 (she is usually around 79-81) and after discussion with the cardiac liaison nurse at Oxford, we were asked to bring Jessica in for a check-up the next day.  Thankfully all seemed to be well with Jessica’s heart function on her echo and her sats had come back up to normal levels so the team are happy to continue with the present plan to monitor with no intervention planned for this year.  Jessica also had a chest X-ray which we are awaiting the results of.  She got a certificate for being very good at standing still and having this done (and Sophie also got a certificate for waiting patiently while Jessica had her X-ray).  Our next planned appointment is at the beginning of next month but if all is well with the chest X-ray then this will probably be moved back.  

Otherwise, Jessica is doing well and continues to be a very happy and active little girl.  She is starting to get quite excited about her birthday next month and tells us every day that “it will be my birthday soon!  I going to be 4!”

It is the little blips like we have had this week that remind us again of the reality of Jessica’s heart condition and the need for future surgery but to hear her chattering so excitedly about her birthday makes us realise again just how very lucky we are to have her.  The last four years have gone by so very quickly – sometimes it seems that it was really only yesterday that she was a tiny baby and now she is getting to be quite a big girl. 

Four years on from the first step

This time four years ago, Jessica had just taken the firstbig step on her journey, having come through her very first heart surgery whilst still in the womb.  Four years on from being given that glimmer of hope, it is wonderful to see Jessica continuing to do well.  We will always be so thankful to the wonderful team from the John Radcliffe who took that chance on a risky and new procedure four years ago in order to give our little girl a chance to survive.

 

We’ve had a couple of hospital appointments in the last month.  Jessica had her cardiology check-up at Oxford towards the end of last month and her heart function continues to be good, with no plans for any intervention to take place this year which is reassuring, and the next check-up due to take place in early September.  She also had a check-up for her squint and the ophthalmology team are happy that Jessica’s vision is developing well with the squint continuing to flick from one eye to the other so neither eye is dominant.  At present, the plan is to continue monitoring although it may be that she will need surgery for this at some stage.

Jessica had her first sports day at preschool last week which was a very proud moment.  As she crossed the finish line a long way behind her friends, she gave Mummy a big grin and said “Look Mummy, I’m the winner!”  It was such a joy to see how much she enjoyed taking part even though she couldn’t quite keep up with the pace of her friends.

We’ve had lots of lovely days out at Legoland; visited two gold lock controls on the Thames as a slight variation to our gold postbox challenge; went on a hunt around London to find all 50 Shaun the Sheep sculptures; saw In the Night Garden Live with our friend Denise and godmummy Katy and enjoyed a day out at the Charlie Jones Foundation family fun day. 

Four years on – what a blessing it is to be able to look back with our beautiful, happy girl here with us and doing so well.  Laughing whilst chasing Sophie around the garden, chattering away and coming out with phrases that make us giggle (“come on Mummy, tuck in!” was one that made me laugh today) – our little miracle continues to be a ray of sunshine and we are very thankful for her.