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.

A return to Ocean Ward for a cardiac catheter

We arrived back on Ocean Ward yesterday afternoon to prepare for Jessica’s cardiac catheter procedure today.  It was very busy on the ward yesterday and we weren’t sure for a while whether there was going to be a bed for us – thankfully they managed to fit us in.  Jessica was actually quite excited about going to hospital so it was a relief not to have to rearrange having prepared her for an admission.

It seems strange to be back on the ward again after two years – part of me feels like it has been such a long time since we were here last and yet in some ways it seems like was just yesterday.  It is lovely to see some familiar faces on the ward though and Jessica has been very happy to be here on the whole – there are plenty of toys to play with around the bedside and in the playroom and the Little Tikes cars are always a big hit!  

It’s also been lovely to have a few visits from friends too – with visits so far from Godmummy Katy, Helen, Nick and Vicky – thank you all for coming to see us and making our hospital stay a little more pleasant. One of the best things about being back in Southampton is the wonderful support we have here and I’m always blown away by just how kind everyone is.  Having struggled to find Jessica some front-buttoning pyjamas for our hospital stay (I only found one pair of boys pyjamas in the end), I was so touched when Helen arrived with a pretty pair of girl’s button-up pyjamas which were perfect – thank you so much. A huge thank you too to Nick and Charlie for providing somewhere for Michael and Sophie to stay while we are in hospital too.

Yesterday saw the usual pre-op bustle with various tests needing to be carried out.  The worst bits were the blood tests and cannulation attempts – Jessica has never had the easiest veins in the world and even with the magic cream, the multiple attempts required for a successful cannulation were very upsetting for her. Thankfully it all seemed to be forgotten very quickly once the cannulation was in. She needed to have IV fluids overnight as her haemoglobin levels are high (which is fairly common in children with cyanotic heart conditions) which means that she is more at risk of clotting when nil by mouth due to being dehydrated.

We managed to stay distracted this morning with visits to the playroom.  Jessica was quite excited when the trolley arrived and she got to ride in her “carriage” (as she called it) to the cath lab.  Whilst waiting, she found a Megasketcher drawing board and was quite happily drawing pictures of her dolly Kerry and a “shadow monster” whilst chatting away to the anaesthetist about what was happening in the picture which provided good distraction from everything happening.  She wasn’t too keen on the “sleepy milk” going in her arm as it felt cold but went off to sleep very quickly and fairly happily which was a relief.

There was the usual wait of a couple of hours or so while she was in the cath lab – with Sophie to distract us though, it didn’t feel nearly so long.  Once we had the call to say Jessica was back, I headed over to find a very unhappy little lady in need of her Mummy.  We had a nice snuggle together for the next hour or so, and gradually that beautiful smile started to return and Jessica started to feel much better again.

Results wise, things seem to be fairly encouraging.  Jessica’s pressures are good and her right pulmonary artery is a good size, although the left one is (and has always been) quite small.   It may be that this will grow a little more given time, but equally it may be that the increased blood flow that would result from the Fontan would help it to grow.  With regards to the next stage, the catheter indicates that the pressures are good enough for the Fontan to take place, but with things being fairly stable at present, there seems to be no urgency.  The team will discuss the results at their next team meeting and may make a suggestion for when it might take place but will also consider our thoughts on this too.  We’ll know a little more once the team meeting has taken place.

After a few hours to recover, Jessica was pretty much back to her usual happy self and keen to get back in the cars and go driving around the ward again! The site where the catheter was inserted in her groin is very bruised and the team are keeping an eye on this overnight but otherwise all seems to be well and we’re hoping to go home tomorrow.  Thank you to everyone for all of your thoughts and prayers today and we’ll keep you posted.

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!