Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Friday 25 April 2014

Another cardiac check-up



Jessica had her cardiac check-up at Oxford today and we were pleased to be told that her heart function is stable at present although getting the echo done required much more distraction now that she is getting bigger!  Her sats remain around 78-80 and she is gaining weight with today’s weight-in (albeit fully clothed) being 12.46kg (27lb 6.5oz).  She is also getting taller – her height today was 84.2cm so she has grown 1.6cm since the start of the month.  With the visits being so spaced out now, the changes in her development become much more noticeable when watching her playing with the toys in the waiting room and interacting with the other children.  We saw a different doctor for Jessica’s check-up as her usual cardiologist, Dr Archer is currently away in the States and so her next check-up will be in three months’ time when we should see Dr Archer.


Jessica’s vocabulary is just growing day by day and she is becoming very chatty.  Our current favourite mispronounced words are ‘koala’ (ko-wa-wa) and ‘guitar’ (‘ghee-ha’).  She has now learnt how to count to thirty (although sometimes misses one or two numbers out) and her repertoire of songs is increasing – it is so lovely to hear her singing as she wanders around the house with her toys.

 
Jessica enjoyed a trip into central London with Mummy and Sophie at the weekend and walked from Leicester Square all the way up Regent Street, around Hamleys and then on to Oxford Street to John Lewis where we had lunch – a walk of more than a mile which was a very long walk for little legs – she was quite insistent though that she wanted to walk rather than go in the buggy (needless to say, she slept very well that night!)  She also enjoyed getting Easter eggs on Sunday (particularly the one that came with a Mr Tumble bowl and cup!) and is gradually working her way through all the chocolate!  



Mummy took Jessica and Sophie to have their first passport photos taken as we are hoping to go on holiday to France in a few weeks’ time.  As we are planning to drive and go by ferry, there should be no problem with this (although haven’t yet embarked on finding suitable travel insurance!) but we have been reminded of the importance of keeping Jessica hydrated.


Whilst we have been celebrating Jessica’s continued good progress, we have been conscious that being able to do so is a precious gift.  Yesterday was a sad day as we attended the funeral of our friend’s little girl and we continue to keep them in our thoughts and prayers.

Thursday 10 April 2014

Two years post-Glenn




Today is one of Jessica’s heart days – it is two years today since her Glenn procedure. This time two years ago, she had just come out of theatre and was in PICU.  It is such a huge blessing to look at her today and see how far she has come.  Like all heart parents, we have learned to make the most of every moment with our children and we were very sad to hear that some friends of ours recently lost their little girl.  We are reminded that our children are a very precious gift and how important it is to make sure they know they are loved and enjoy all those precious moments.  Our thoughts and prayers are with our friends at this very sad time.

 
We were sad to say goodbye to our wonderful toddler signing teacher Bev at Tinytalk today as she is stepping down from teaching baby signing.  Bev has taken all of the signing classes that Jessica has attended for the last two years and we will miss her – thank you Bev, we have enjoyed the last two years of your classes very much.  



Jessica is now able to recognise all the numbers from 1 to 10 which is great fun when we are in the lift at the shopping centre as she points out the numbers each time the doors open: “Hello number three, bye-bye number three, see you soon number three!”  She is also getting there with being able to count to 20 and is starting to learn her colours although still gets a bit mixed up with these at the moment.



We had a lovely few days staying with Nanny and catching up with the family last week whilst Daddy was away in Berlin and Jessica and Sophie got to meet their new cousin Gracie-Mae who was born a few weeks ago as well as seeing a few of their other cousins.  They also have another new cousin who was born earlier this week – baby Freddie – although we haven’t yet met this latest addition to our family.

Tuesday 1 April 2014

Check-ups, coffee mornings and celebrations



Jessica had her check-up with the paediatrician at Wexham Park this morning.  She weighed in at 11.9kg (26lb 3oz) today, so continues to follow the 25th centile line for weight and her height was measured at 82.8cm, putting her between the 0.4th and 2nd centile for height – so far she seems to be taking after Mummy on the centile charts (Sophie on the other hand is on the 50th centile for weight and the 75th centile for length!)  Jessica’s sats today were between 77 and 81 so remain stable.  The paediatric team are happy with her progress and will see her again in six months’ time.  



We also had an appointment for Sophie at the same time as we have noticed that her hands and feet are often blue when she wakes in the morning.  We were reassured to be told that Sophie’s sats are normal as were her heart sounds but have been referred for an echo just to be on the safe side.


We have had a very busy weekend with our girls – we had a coffee morning raising money for Little Hearts Matter at church on Saturday morning (thank you to everyone who came and helped us raise £52.80 for the charity) and then celebrated Mary & John’s diamond wedding anniversary before heading off to two first birthday parties for Jessica and Sophie’s friend Alex and their third cousin Elisabetta.  Mummy enjoyed Mother’s Day with both her girls and got very emotional at church seeing Jessica walk in with the other children and help hand out daffodils.  It made us realise how truly blessed we are and how far Jessica has come on this journey so far – God has been so very good.




It has also been good to be able to get out and about a lot more now that the weather has started getting nicer.  Jessica has been enjoying trips to the park and walks around Black Park (we were quite impressed that she managed to walk all the way from the car park to the playground and then part of the way back – that’s quite a long walk for those little legs!)  She has also been enjoying helping Mummy bake cakes (although admittedly none of the cake mix in Jessica’s bowl manages to make it into the oven!)  Jessica is getting more and more chatty now as well which is lovely and also loves to sing along to her music – it is lovely to hear her singing away (although sometimes she goes a little shy if she realises we’ve been listening!)