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.