Another good check-up

Jessica had her cardiac check-up yesterday at Oxford and is continuing to do well. Her sats were 77, which is slightly lower than they have been at home but still within her normal limits and there were no concerns raised from her echo. She is growing well - now 86.7cm tall and weighing in at 12.9kg, putting her just below the 2nd centile for height and staying on the 25th centile for weight. The plan is for another check-up in December. With regards to her next stage operation, there will need to be another cardiac catheter beforehand to check how Jessica's pulmonary vessels are growing but no plans for any surgery before 2015. Ideally, Jessica would be over 15kg before her next stage and if she continues along her current weight centile, that won't happen before she turns 4 so we are hoping that it will be at least another year before she needs any more surgery.

Jessica's eye-check up earlier this month also went well - she still has a squint in both eyes but neither eye is dominant (which is a good thing) and the glasses are helping and her vision is good with them so the plan is for another check-up in six months.

We have been continuing to get out and about over the summer, having found some more book benches (bringing the total up to 35 out of 50), spent lots of time visiting family and doing the Gruffalo trail and a treasure hunt with Auntie Fizz, Ebony and Erin and just generally enjoying the summer.

 

 

Jessica's journey has also featured in the summer issue of Heartline Families magazine.

A busy few weeks

We have been having a lovely time over the last few weeks, making the most of the sunshine and embarking on a new challenge now that we have visited most of the gold post boxes within a reasonable drive of home.  Books about Town features 50 different bench sculptures in the shape of an open book (with a 51^st bench due to be added at the end of August) which have been placed all around London and we have been enjoying getting out and about and trying to find as many as possible.  There are four different trails on the website and so far we have completed the City trail and visited most of the books on the Greenwich trail.  We are aiming to visit them all over the summer and Jessica and Sophie have been enjoying having their photos taken with them.  Jessica particularly loves being able to go on long walks (she really copes quite well with all the walking although we do always have the double buggy with us in case she gets tired) and particularly loved being able to run about in Greenwich Park.

Jessica had a check-up with the community nurse a couple of weeks ago and her sats were 85% which is the best they have been for quite a while.  She is continuing to gain weight beautifully and staying on the 25^th centile line – now weighing in at 12.63kg (27lb 12.5oz).   

We have been starting to look at pre-schools as Jessica will get her funded hours from January.  There are three options within a few minutes’ walk of our house and Jessica has enjoyed all her visits to these.  She painted a picture of a fish at one of them - her first painting where we could actually recognise what it was that she was painting which was a lovely little milestone.  We weren’t quite so impressed with that particular nursery though – the sign asking us to “pleese” press the buzzer to come in didn’t make for a very favourable first impression!  The other two pre-schools look much more promising though!

In the meantime though, we’re continuing to enjoy all our regular groups although most of them have now stopped for the summer.  Jessica recently did her first ever sponsored event at Tiny Talk, her toddler signing class, and did some signing to help fundraise for The Rainbow Trust and also received her fifty signs certificate – well done Jessica!  She has become very chatty this days and loves singing to herself, making up songs about whatever she happens to be doing at the time (just like Mummy does!).  She is just about getting there with recognising her colours now, knows the alphabet song and has started being able to recognise some letters and can now count to forty by herself (and is nearly there with getting to fifty).

Now that Sophie is crawling (and pulled herself up to standing for the first time today), she is much more able to get to whatever toys she wants rather than the ones Jessica is happy for her to play with and so sibling life is not quite as harmonious as it once was.  However, there are definitely moments when they play beautifully together which are a joy to watch, and moments when they both want the same toy or when Jessica gets annoyed because her sister is getting in her way.  Fun times!

Socially we’ve been busy – attending cousin Gracie-Mae’s christening and our friends Neil and Clare’s wedding as well as spending a few days visiting Nanny and going to see Auntie Maxine who was in hospital (thankfully she is much better now and back home).  We have had a day out at Legoland where we bumped into godmummy Katy, had a fundraising coffee morning at Christ Church and raised just over £60 for Friends of PICU, enjoyed a visit from Mummy’s friends Lisa and Ashley and spent lots of time in the garden just enjoying the nice weather.  On the whole, Jessica has coped very well with the heat and we make sure she keeps well hydrated.

Jessica is due to have her cardiac check-up towards the end of next month and also has her eye check-up next month as well – we will keep you posted with how she gets on with these.

Three years on from the first step

It is three years today since Jessica took the first step along her journey with the success of the second attempt at fetal surgery.  We will always be incredibly thankful to the fabulous team of consultants who were involved in that surgery and helped give us hope, and to all of our friends and family who surrounded us with their love and prayers and have continued to do so.  We recently attended the Churches Together in Uxbridge (CTU) AGM with Jessica and Sophie.  The CTU prayed for us as a family at their AGM three years ago and it was lovely to be able to share Jessica’s story again with them and show how God answered that prayer.  What a huge blessing it is to be able to watch Jessica grow and thrive three years on.

  

We have been making the most of the lovely weather over the last couple of weeks with lots of different outings as well as enjoying time just playing in the garden.  We have visited Paulton’s Park and Peppa Pig World with other Ocean Ward families and saw two other children, Jack and Eli, who were in hospital at the same time as Jessica.  It is always lovely to catch up with other heart families and see how well the children are doing having last seen each other in hospital.

Jessica and Sophie also enjoyed going to see In the Night Garden Live in Richmond and meeting Igglepiggle and Upsy Daisy afterwards.  We have had a day out at Legoland with Grandma and been to stay with Nanny for a few days, catching up with aunties, uncles and cousins there.

Today we have enjoyed a day out at the Charlie Jones Foundation family fun day where we enjoyed spending time with godmummy Katy and seeing some other heart families there too – Donna and Lily; and Freya, Lee, Noah and Erin (who is a fellow HLHS warrior).  Jessica and Erin had a little cuddle and it was lovely to see how well both girls are getting on.

First holiday abroad

 

We have been enjoying our first holiday abroad as a family – a road trip around France, Monaco, Italy and Belgium with a trip to the Channel Islands thrown in too.  Here’s a brief summary of our holiday in numbers:

12 days

5 countries

6 ferry crossings

9 hotels

60 hours of travelling (49 by car, 11 by boat)

2113 miles of driving
 

Jessica coped fairly well with all the travelling about – downloading her favourite CBeebies programmes onto the iPod helped out quite a lot with this although we discovered very early on that her favourite programmes are no longer what we thought they were – Mr Tumble is out and Mister Maker is in. It meant she ended up watching the same three episodes over and over quite a few times but it made some of the longer drives much more bearable for her.  Sophie also coped quite well with the travelling (mostly tending to drift off to sleep during the journeys despite Jessica’s best attempts to wake her up by prodding her with various toys!)

We have visited our penultimate Olympic postbox on Sark and just have the Isle of Man left on the list now.  Our journey to Sark from France involved four ferry crossings and much juggling to get two small children, several bags and a buggy down some rather narrow gangplanks and steep steps!  Somehow we managed it – and we had a lovely day on Sark exploring the island.  Jessica enjoyed being able to run about without having to worry about cars and had a ride on a horse and cart which was fun.

Whilst we were in France, we visited the Bayeux Tapestry, saw the start of the D-Day 70th anniversary commemorations in St Mère-Eglise, visted Château de Villandry, crossed the Viaduc de Millau and visited our friends Simon and Jo in Aix-en-Provence – who got to meet Jessica and Sophie for the first time.  Jessica dipped her foot into the sea at Cannes but wasn’t too impressed about it although she did enjoy the ‘big bath’ (otherwise known as a swimming pool) in the hotel in Aix-en-Provence although couldn’t stay in it very long as the water was unheated and a bit on the chilly side.   We took a trip around the Formula 1 circuit in Monaco, stayed overnight in the Italian Riveria and then headed back to France (with a final overnight stop in Belgium) before we got the ferry back home again.  

The weather was very hot for the second half of our trip (reaching 40˚C when we were in Dijon) – thankfully there was air conditioning in the car and the hotel and Jessica coped well with the heat (we made sure she was well hydrated and she also got to enjoy lots of ice cream to help keep her cool too!).  Jessica discovered a packet of chocolate rice cakes in a bag in the back of the car at one point on our travels which she proceeded to open and eat – covering herself and the car seat in melted chocolate (and then before we had a chance to clean her off properly, threw herself on the nice clean white sheets on our hotel bed and covered them in chocolate too!)  She also had to manage without her glasses for most of our trip as there was some minor damage to them (which got fixed after we arrived home - somehow holidays seem to be the perfect time for these things to happen!)

Jessica has been a little subdued since getting home as she is full of cold and has also come up in a bit of a rash on her legs and arms – the doctor has diagnosed a virus and prescribed some cream to soothe it – hopefully it will disappear very soon and thankfully doesn’t seem to be bothering her too much.  Otherwise she’s been enjoying being out and about in the sunshine and got her face painted for the first time today (which she loved) at the local infant school fair.

 

A busy couple of weeks

Jessica had her monthly check-up with the community nurse at the end of last week and her sats were up to 82 which is the best they’ve been for a little while.  Her weight was a little down from the previous weigh-in at 12.4kg (27lb 4.5oz) but she’s still following her centile line nicely.

We are now at the stage of having to be very careful about what we say as she is definitely starting to repeat lots of things now!  Watching her playing with her dolls and saying things like “Eat dinner, have cake… …then no cake!”, “don’t touch, be careful!”, “hello Sophie, nice to see you!” and my personal favourite: standing at the bottom of the stairs and calling “Get up Michael!”  We’re definitely starting to see all our little pet phrases coming right back at us!

We enjoyed spending time with other members of our church family last weekend when we went away on the church fellowship weekend.  Jessica and Sophie both enjoyed spending time with everyone there and it was lovely for us to spend time away as a family.  We took a little detour on the way home and visited one of the Paralympic gold postboxes in Oxford which brings the total of these up to 24 (out of 46)

Nanny came to stay recently and looked after Jessica whilst Mummy and Daddy took part in the concert at church which helped to raise £112.60 for Friends of PICU.  It was lovely spending a few days with Nanny and then visiting family when we went to stay with Nanny for a few days when she went home again.

We are looking forward to having our first family holiday abroad next month – going by ferry and car to the south of France to visit friends there.  We had to do quite a bit of phoning around though to arrange travel insurance for Jessica – we found the travel information leaflet and list of possible insurance companies from Little Hearts Matter was very helpful with this.  The lady we spoke to at the insurance company we finally went with happened to also be a heart mum of an 18 year old who was treated at Southampton by one of the consultants who we knew from Jessica’s time there!

  

Jessica’s story has recently been mentioned in the Children’s Hospital Network Annual Review booklet and we received a few copies of this in the post.  Mummy also wrote a guest blogpost last week for the Little Hearts Matter blog which shared some of our experience of how Little Hearts Matter have helped us as a family since Jessica’s diagnosis.