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.

Wednesday 26 December 2012

First Christmas at home



We had a bit of drama in the run-up to Christmas when Jessica had croup one night and we called an ambulance as she was really struggling to breathe and her sats were dropping.  Thankfully it was short-lived and her sats had picked back up by the time the paramedics arrived but we ended up blue-lighting in to hospital where Jessica was given a dose of steroids which helped sort things out.  By lunchtime we were all back home again, and Jessica has been fine ever since (just a little bit of a cold at the moment).   One of her front top teeth has now finally made an appearance (although another molar came through first!) so she now has five teeth and has been sleeping better since the second molar appeared.  She is also getting more confident with standing up and has now worked out how to sit back down again!


Jessica has thoroughly enjoyed her first Christmas at home (as have we all!) and it was so lovely to be able to take her to the Christmas service at church this morning.  She has had so many presents and lots of lovely toys, clothes and books and enjoyed spending the day with Grandma and Grandad who also spent Christmas Day with us.  Favourite presents so far are the stacking cups that Santa left in her Christmas stocking, a talking nursery rhyme book and a toy piano from Mummy and Daddy.   Jessica loved unwrapping the presents although it was very slow at times as every time she tore a tiny piece of wrapping paper off she handed it to Mummy or Daddy to put in the bin!  She wasn’t too impressed about wearing a paper hat for Christmas dinner and whilst she enjoyed the turkey, most of the Brussels sprouts ended up on the floor!

 
Overall, it has been a very lovely day and a much nicer Christmas than last year (although everyone in the hospital made it as nice as it could have possibly been, it just isn’t the same as being at home!)

Hope everyone has had  a lovely Christmas too and peace and blessings to you all for the year ahead. 

Friday 14 December 2012

What a difference a year makes...



This time last year was one of the longest days of our lives as Jessica spent eleven hours in theatre having her Norwood procedure and first attempt at the Glenn procedure.   Looking at her this morning, laughing and chatting away and seeing the Christmas tree at home for the first time, we feel very, very blessed that our little miracle is here and thriving and we are able to look forward to our first Christmas at home as a family.   A huge thank you to the surgical team and all the wonderful doctors and nurses on PICU and Ocean Ward for helping to get Jessica where she is now, not to mention all the support and prayers from all our wonderful friends and family and everyone who has been following Jessica’s journey.


We had a recent check-up at Wexham Park Hospital and all was well.  Jessica now weighs 8800g (19lb 6oz) and is 73.6cm tall.  Her sats have been in the mid-80s recently which is great and she continues to be as happy and smiley as ever.  She has been teething again – looks like the top two teeth will be making an appearance shortly (all she wants for Christmas are her two front teeth!)

She has been to another Christmas party – this time organised by Friends of PICU and had a lovely time there.  Michael and Louise have been busy rehearsing over the past few weeks for a fundraising concert in aid of Friends of PICU which will be on 19th January 2013 at Christ Church in Uxbridge – tickets are available from the church office – click here for more details.


We have one more Christmas party to go this weekend and then will be looking forward to Christmas at home.  Merry Christmas to everyone who has been following us this year – God bless you all.

Wednesday 5 December 2012

A couple of firsts




The past weekend has seen a couple of firsts.  Jessica attended her first Christmas party on Sunday and got to see Father Christmas (although not for the first time as he visited Southampton General Hospital a couple of times last year!). The Christmas party was organised by the Alexander Devine Children’s Hospice service for children with life-threatening and life-limiting conditions (our lovely community nurse Lucy is an Alexander’s nurse) and the theme was Charlie and the Chocolate Factory.  There were actors performing a very short version of the story and keeping the children entertained throughout plus lots of activities.  Jessica loved the soft play and sensory areas  and the ball pond.  She had such a fabulous time – a huge thank you to the Alexander Devine Children’s Hospice service for organising such a wonderful party.   



Jessica also stood up for the first time on Sunday (which prompted Daddy to lower the cot again!) and since then has been practising this new skill by pulling herself up on tables, sofas and her little bookcase.  The only problem with this is that whilst she has worked out how to stand, she is not quite sure how to get back down again and so gets a bit upset at being ‘stuck’!



We’ve been waiting for more teeth for quite some time and thought the top front teeth (the next ones that usually come through after the bottom two) were about to make an appearance.  It was quite a surprise when we realised that one of her top molars has come through – we were expecting a few more teeth before one of those appeared but Jessica clearly likes to do things her own way.  It does explain why we’ve had quite so many disturbed nights with teething recently though…!

 
We had another appointment at King Edward VII Hospital for an eye check-up.  Jessica’s squint still alternates between her left and right eyes and we have been told that this is a positive thing as it means her vision is not particularly impaired as a result of the squint.  The plan at the moment is to keep an eye on it (no pun intended), and go back in three months with the aim of trying glasses in about six months’ time to see if this helps correct it.


As always, Jessica continues to be a little bundle of joy and is really starting to chat much more now.  It is lovely to see her sitting playing with her toys chatting away to herself and she now picks up her teddy bears (her favourite toys) and says “Aaahhhh” whilst hugging them which is very cute.  She also says “bear”, “baby”, “na-ma” (Grandma) and we have also had a “men” at the end of bedtime prayers!



We have a couple more Christmas parties to attend in the next couple of weeks and a check-up with the paediatrician at Wexham Park so will update again before Christmas.