On the news and out and about

Jessica has had a busy time recently being out and about. Earlier this month, she made a brief appearance on the BBC Six O’Clock news in a feature about Tesco trying to attract shoppers to their big stores. One of the things they are doing locally is providing a community space for local groups, and our Tiny Talk teacher will be running classes there which was why we were being featured on the news. If you didn’t get a brief glimpse of Jessica on the news, you can see the video clip again here on the BBC news website – we are onscreen for a couple of seconds about 30 seconds in.

Jessica has been enjoying catching up with various friends and family members and meeting others for the very first time. She thoroughly enjoyed attending cousin Meryl’s birthday afternoon tea (the chocolate éclairs went down very well!) and meeting her baby cousin Elisabetta for the first time. A huge thank you to Meryl for raising £335 as a result of her birthday tea which she has chosen to share between the Salvation Army Kids’ Club and Little Hearts Matter – thank you Meryl! 

 

 

We had a lovely day out at the Friends of PICU family fun day yesterday and enjoyed spending time with godmummy Katy. There were a few familiar faces there that we recognised from Jessica’s various stays on PICU and it was lovely to see Mark, the PICU ambulance driver who transported Jessica in the blue pod from Southampton to Oxford when she was three weeks old and we also saw Chris, one of the nurses who has looked after Jessica on PICU. Jessica took part in the fancy dress competition and her octopus costume won her first prize in the 0-2 age group category! It was also lovely to meet fellow heart mummy Freya and beautiful heart baby Erin whose journey we have been following for some time and who thankfully is doing very well following her second stage surgery.

We are missing Daddy at the moment as he is away working on an event in Cologne but Auntie Twinny and cousins Ebony and Erin have come to stay while he is away and Jessica is having a lovely time with her cousins. She managed to say ‘Ebony’ this afternoon which we were very impressed by and has been amusing her cousins by showing them her repertoire of animal noises – our current favourite is her little lion roar which is very cute!

Three of her canine teeth have now appeared and the fourth looks pretty imminent – apart from wanting to chew on all her toys, Jessica seems to be coping well with the current round of teething and has generally carried on being her usual happy self throughout with only a few grumpy moments when her teeth are clearly bothering her.

Check-up, classes and canines

Jessica had a check-up with the community nurse yesterday and her weight is about the same as it was when she was weighed at Oxford last month but as that was quite a big gain and she is still following the 25th centile line on the weight chart, this is not a cause for concern. Her sats are generally staying at about 80 at the moment which is fine. 

 

We did have one blue episode recently as Jessica had a swim in the outdoor pool at a church open house and whilst on the whole she was fine, after about ten minutes, she did start going a little blue. As it was on one of the cooler days of the summer so far, she did get a little cold in between getting out and getting dressed and so was much more cyanosed that we have seen her for quite some time but thankfully she pinked up again quite quickly once she was warm and dry.

 

Jessica has now been to a couple of Tiny Talk toddler signing classes now – although she is not quite the youngest toddler there, she is definitely the smallest and we did wonder if she would be a bit overwhelmed by a bigger classes and a lot of very active bigger toddlers but she loved it. She visibly gained in confidence between the two classes and is proving to be a little performer – this morning, she decided that she wanted to stand in the middle of the circle and demonstrate all the actions for one of the songs (and did so beautifully!) It is also interesting to see how she watches the other children and tries to copy them – for instance, when they are jumping about. She hasn’t yet worked out how to jump but she does lots of quick stepping on the spot instead and no doubt will figure it out soon! Signing-wise she is coming on in leaps and bounds – it seems like she learns a new one almost every day now. Our current favourite though is ‘sleep’ – particularly as it is always accompanied by a snoring noise!

 

 

 

After several months of respite from teething, the four canine teeth are starting to make their way through (Jessica always seems to do teething in bulk!) and the first of these has appeared today. Thankfully this hasn’t seemed to bother her too much – she has moments of being a bit grumpy about it and wanting to chew on everything but on the whole she has continued to be her usual happy self. She had a lovely weekend catching up with Nanny and various aunties, uncles and cousins at her cousin Wayne’s wedding recently.

 

 

Whilst we still don’t think she is particularly aware of the fact that she will be having a sibling before long, she did point to Mummy’s bump for the first time and sign ‘baby’. She does love seeing babies at various groups and is quite fascinated by them so hopefully this is a good sign. Pod is growing well and is now at the same gestation that Jessica was when she had her very first surgery in-utero. It is amazing to think that that was over two years ago now – looking at our happy active girl today, it is hard to believe she has been through so much but what a huge blessing it is to be able to watch her grow and develop and enjoy so many precious moments with her!

 

Iggle-Piggle, performing, painting, Peppa Pig World and postboxes

With all this lovely sunshiney weather, we have been out and about quite a bit as a family and Jessica has been coping very well with the heat on the whole. July has certainly been quite a fun month for her so far. We started off with a trip to see ‘In The Night Garden Live’ at the beginning of July along with Jessica’s cousin Scarlett-Rose who is twelve days older than Jessica and they both enjoyed the show very much. We had tickets to meet Iggle-Piggle and Upsy-Daisy after the show which Jessica absolutely loved – she gave a big squeal of excitement and went running up to them and gave them lots of cuddles and kisses.

The following weekend saw all of us taking part in a fundraising concert called ‘Here Comes Summer’ to raise money for our church audio-visual equipment upgrade project. Jessica made her second stage appearance in the final number ‘The Sun Has Got His Hat On’ which she knows from her baby signing classes and so she was also doing some of the signs while we were all singing. She had her last signing class in the baby group last Friday and will be moving up to the toddler class over the summer.

She painted her first picture at a Stay and Play session at our local children’s centre last week which Mummy has very proudly put on the fridge. It is the first time she has shown an interest in the paint table even though it has been out at nearly ever session she has been to.

We had a trip to Paulton’s Park at the weekend thanks to Families of Ocean Ward who organised a trip for heart families from the ward and Jessica loved the rides at Peppa Pig World. Now she is more confident with her walking, she has also become more confident at climbing on various things in playgrounds and then going down the slides so she had a lovely time in the toddler playground as well. She also thoroughly enjoyed ‘Muddy Puddles’ – a water area for small children and had a fabulous time splashing about with all the water jets.

We have been visiting some more postboxes around the country and are now up to 56 Olympic ones (8 left to go!) and 17 Paralympic ones. Jessica has got quite used to being sat on top of them and holding up a picture to show whose postbox we are visiting!

Jessica had another eye check-up today at Windsor and there is a very slight improvement in her vision which means a new pair of glasses. The team there think that by the time she is eight or nine, she will no longer need to wear glasses to correct her squint. This is the first time they have confirmed that Jessica may not need to wear glasses permanently so is encouraging news.

 

We would also like to say a big thank you to 1st Uxbridge Boys Brigade who held a 'London Literary Tour' sponsor day in March and raised £450 for Little Hearts Matter which they presented to us at their parade day in July - well done to the Boys' Brigade!

Another good check-up

Jessica had another check-up at Oxford on Friday and the team there were happy with how she is getting on. Her echo showed that her heart function is good and although they couldn’t visualise her lung arteries clearly, her general well-being and saturation levels (which were between 78% and 80%) indicate that there should still be good blood flow through these. Her weight is now up to 10.8kg (23lb 12oz) so she is continuing to do well with her weight gain too.

Jessica’s glasses have now been fixed so she is back to wearing these (her squint was much more noticeable during the two weeks she was without them). She is getting very confident with her walking now and there is no stopping her – she wants to explore everything and anything now and it is lovely to watch her (if a little exhausting at times trying to keep up!)

We have had a lovely sociable weekend celebrating our friends Sarah and Mark's wedding which Jessica enjoyed very much, particularly spending time with her godparents Bryan and Nicki and ‘helping’ them with a game of croquet in the afternoon!

Our check-ups at Oxford have spaced out a little further now as Jessica is doing so well and so her next check-up isn’t due until towards the end of November. We have also had a second heart scan for Pod which seemed normal and all being well, this will be the last scan needed so all is going well with Jessica’s baby brother or sister too.

Stepping out on holiday

We have just returned from having ten days away, firstly travelling to Southampton and Bristol to visit friends, then spending five days at Butlins in Minehead followed by a couple of days in Cornwall for a couple of days before coming home via Poole and Shaftesbury where we visited some more friends.  Unfortunately she has had to manage without her glasses for the last couple of weeks as Mummy accidentally broke the frames and we are still waiting for the replacement frames to arrive so they can be mended.

 

Jessica has been thoroughly enjoying herself – particularly the few days we spent at Butlins.  She got to meet Angelina Ballerina and Pingu (and was a bit upset at having to say goodbye to them after having her photo taken!), has been enjoying the various rides in Bob The Builder’s Yard and has had fun exploring the soft play area and the sensory room in the nursery.  She also enjoyed a little dance with Daddy at the tots’ disco and the parent and toddler swimming sessions.

Whilst travelling around the country, Jessica has also visited a few more gold postboxes taking the total of Olympic ones visited to 46 (out of 64) and Paralympic ones to 13 (out of 46). 

The highlight of our holiday was our last day when Jessica suddenly got the confidence to start walking on her own.  She has been doing a couple of very wobbly steps here and there for a while now but clearly spending lots of time walking whilst holding Mummy or Daddy’s hand during our holiday helped her confidence because she is now taking quite a few steps on her own.  She is still a bit wobbly on her feet but is so very proud of herself for being able to walk by herself and it is a delight to watch her.

We had a visit from our community nurse just before our holiday and Jessica has regained the weight she lost last month and is back up to 10.24kg (22lb 8.5oz).  Her sats are staying in the low 80s so all seems to be well at present.  She is due to have another check-up at Oxford at the end of the month and hopefully this will continue to show that her heart is functioning well.

Photoshoots and postboxes

May has been a lovely sociable month for Jessica with lots of visits from and to friends and family.  She met our friends Rob and Elisa who were visiting from the USA and thoroughly enjoyed her playdate with their daughter Tori.  She attended a dedication service for our friends Phil and Tany’s daughter Amy and enjoyed having various family members coming to stay towards the end of May including Auntie Maxine, Auntie Twinny and cousins Ebony and Erin.  Jessica seems to be in her element when she is being sociable and has been thoroughly enjoying herself.  She is a very affectionate little girl and so everyone has been getting lots of cuddles and kisses from her (as have all her favourite toys which is quite delightful!) 

 

Whilst she did take her first unsupported steps early on in May, she is still not quite confident enough yet to do so on a regular basis although we have seen her take a couple of steps here and there.  She is chatting and signing much more though – her signing vocabulary is much more advanced than her speech but her favourite word with both seems to be “duck”.  She was quite delighted this morning when we had a photoshoot at the Heath in Petersfield and got to see all the ducks by the pond!  The photoshoot was for the ‘Book of Love’ which is a project organised by the Charlie Jones Foundation to help raise money for Little Hearts Matter.  We are looking forward to seeing the results of this morning’s photoshoot.  The book is due to be printed towards the end of the year and we will let you know when it is available!

 

The nice weather has also seen a restart of our ‘GoldPostbox Challenge’ – trying to visit all the golden postboxes painted for Team GB gold medallists.  We have now visited 41 out of the 59 postboxes.

Scans, steps, sight tests, socialising and another significant anniversary

Two years ago today, we had a scan at Great Ormond Street Hospital where we were told that Jessica’s heart condition was so severe that she was unlikely to be suitable for surgery.  It was one of the worst days of our lives and yet with hindsight, there were positives, because the cardiologist we saw mentioned the in-utero surgery performed at Boston Children’s Hospital, almost as a throwaway comment.  That comment led to Jessica having her first surgery in-utero six weeks later in Oxford, the surgery that gave us a glimmer of hope and now here we are two years on with a beautiful little girl bringing lots of joy to our lives.

Today, we had another fetal cardiac scan, but thankfully a much more positive one than that one two years ago.   As far as the team at Oxford can tell at this stage, Pod’s heart appears to be completely normal which is a huge relief.  Jessica was a little confused though by going to Oxford and watching Mummy have a scan with Dr Manning instead of her!

Jessica has finally taken her first unsupported steps.  She managed a couple of steps about a week ago but very quickly got wise to the fact that Mummy stood her up and then moved away and now decides to sit down instead of trying to take any steps.  Clearly she still needs to gain a little more confidence before being ready to walk by herself but she definitely loves walking as much as possible whilst holding our hands.  She also loves song time and has now started to join in with some of the actions to her favourite songs which is lovely.

 

Jessica had a lovely time over the Bank Holiday weekend with a visit to Nanny’s, catching up with her aunties, uncles and cousins, and then going to a barbecue at our friend Nick’s and getting her first dip in the paddling pool which she loved.  Jessica has also been to another wedding at the weekend – our friends Matt and Jeanine were renewing their vows (we missed their wedding first time as it was in LA and took place just after Jessica’s arrival!)  She also helped Mummy celebrate her birthday last week as well so has had quite a busy time on the social front!

 

 

We were back at King Edward VII Hospital in Windsor last week for an eye check-up.  The glasses are helping reduce Jessica’s squint which is great news and the plan is to have another eye test in a couple of months and probably increase the strength of her glasses to help remove the squint entirely. 

 

 

We had a visit this afternoon from the community nurse.  Unfortunately the sats monitor that we have from the hospital is somewhat prehistoric and so decided to keel over so we didn’t get a sats reading.  We will have another visit later this week to check Jessica’s sats but as her colour has been good and she seems well, we are not too concerned.  She has lost a little weight though – down to 10.05kg (22lb 2oz) but is still between the 25^th and 50^th centile lines so again not a cause for concern at present – it may be due to the fact that she is walking more.

Thank you to everyone who attended our coffee morning last week for Little Hearts Matter – we raised £61.72.