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.

Tuesday 30 April 2013

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.

Saturday 13 April 2013

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.

Wednesday 10 April 2013

One year post-Glenn

This time last year Jessica was on PICU having just had her Glenn procedure, her most recent open-heart surgery.  Today, I have been watching my little girl laughing and playing with her cousins as we went to Black Park for the afternoon and feeling very blessed to be able to enjoy these precious moments.


We finally finished decorating Jessica’s bedroom and she moved into her own room for the first time on Easter Sunday.  So far she has settled very well in her new bedroom.  She has very much enjoyed having lots of chocolate over Easter and is still working her way through the various chocolate bunnies and Easter eggs! 

The community nurse visited last Monday and Jessica’s sats were in the 80s which was great and she now weighs in at 10.19kg (22lb 6oz) so is gaining weight beautifully.  Jessica has now got her new glasses which will hopefully help correct her squint – the first day she had them she was keeping them on for 20 minutes at a time but the next day she managed to keep them on all day which was fabulous.  It is clear that they have made a difference to her vision – she definitely looks more intently and concentrates more on her toys when she is playing now and she has become much more confident at cruising around the furniture and is getting very quick on her feet now, particularly if she notices that the safety gate on the lounge door has been left open by mistake!  She has managed to stand unaided very briefly (just a few seconds at a time) and is very confident at crawling up the stairs although is usually quite breathless by the time she reaches the top.


We have a new favourite sign this week – Jessica has now started signing ‘love’ in response to ‘I love you’ which is lovely, particularly when she signs it unprompted!  She has also added ‘rabbit’ (not always easily distinguishable from ‘cow’) and ‘duck’ to her signing repertoire (this one being a particular favourite at bath time!)

It is so wonderful to see how she is going from strength to strength particularly when we think back to this time last year when Jessica had such a difficult recovery from her Glenn thanks to a wound infection and a bout of parainfluenza.  She is such a huge blessing in our lives and we thank God every single day for the fact that she is here and doing so well.  Thank you too to all our friends and family who continue to support us throughout Jessica’s journey.