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.

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!

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.

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.