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.

Two years into the journey

Today is the second anniversary of the day we found out about Jessica’s heart. What a huge blessing it is to be here today looking at our beautiful little girl who has now grown into a very active toddler and brings so much joy into our lives with her big smiles, hugs and kisses. God has been so very good to us over these past two years.

 In the two years since we were first diagnosed, Jessica has:

• had five operations (including the one at 28 weeks’ gestation), three cardiac catheter procedures and one other trip to theatre due to an infected wound after her Glenn procedure.
• been admitted to hospital ten times, spending 103 days in total in hospital, 38 of which were spent on PICU.
• had 25 hospital out-patient appointments across four different hospitals as well as being visited at home by the community nurse 57 times.
• attended six weddings, one civil partnership, four funerals and one christening (her own!)
• given us more smiles, kisses, hugs and brought more joy to our lives than could ever be measured

We have had, and continue to have, so much support on this journey from our friends and family not to mention many people who have prayed for Jessica who do not know us personally and we are so grateful to you all for your love and support – thank you so much.

We are hosting a coffee morning tomorrow morning (4th May) at Christ Church in Uxbridge, 10am – 12noon in order to fundraise for Little Hearts Matter. As many of you will already know from previous blog posts, Little Hearts Matter is a charity which provides support and information to children diagnosed with single ventricle heart conditions and their families. The information they provided as part of their antenatal pack was particularly helpful to us in the early days of Jessica’s diagnosis. If you are in the Uxbridge area tomorrow morning and able to pop in for a cup of tea and coffee, it would be lovely to see you.

New shoes and skills

Jessica is continuing to do well and whilst she hasn’t yet had the confidence to start standing or taking a few steps without holding on to things, she is becoming very confident at walking whilst holding Mummy or Daddy’s hand and is very keen to practice this as much as possible!  She is gradually getting more confident and will now stand unassisted very briefly whilst moving between various items of furniture.  As Jessica is so keen to walk as much as possible, Nanny bought Jessica her very first pair of shoes when she came to stay a couple of weeks ago.  She is a size 3½ so has the same shoe size as Mummy (just in children’s sizes!)

Jessica has learned one very important new skill in the last week though and that is the ability to climb on to the sofa.  Our lounge has suddenly become a little more minimalist as we have had to remove certain items that are now within Jessica’s reach! 

We would like to say a huge thank you to Jessica’s godfather Bryan who ran the London Marathon recently in aid of Friends of PICU and raised over £700 for them.  Thank you also to everyone who sponsored Bryan and helped him raise such a fabulous amount.

Jessica has something to say...

Jessica has a little something that she would like to say…

Yes, we are very excited to announce that Jessica is going to be a big sister hopefully sometime near the end of October all being well.  She got to see her little brother or sister (currently nicknamed Pod) on scan earlier this week and all seems well as far as they can tell at this stage, although we will be having a cardiac scan in a few weeks to look more closely at Pod’s heart.  We have been told that we have around a 1 in 50 chance of having another child with a heart defect – hopefully all will be well with Pod’s little heart.