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.

Thursday, 23 November 2017

Another new date for the Fontan

We now have a new date for Jessica’s Fontan and will be going into hospital on 27th December ready for her operation on 28th December. Hopefully it will be third time lucky for us! It also means that we will be able to enjoy Christmas together before we have to get back on the hospital rollercoaster.

Jessica is now back at school and enjoying being with her friends again. We got to see her in her class assembly this morning which was lovely. 

Jessica waving silver pompoms in her class assembly


Hope that you all have a lovely Christmas and we will update again when we are back on Ocean Ward.

Tuesday, 21 November 2017

Back in limbo-land


Jessica’s Fontan has had to be postponed once again. We were told this morning that her surgeon, Mr Viola, is unwell and that PICU is also full at the moment which means that her surgery needs to be rescheduled once again.  As yet, we don’t know what the new date will be. In the meantime, it’s back home again while we wait, and back to making the most of normality.


Jessica in the playroom on Ocean Ward



Jessica is very disappointed about her surgery being postponed yet again. She had a good night and had started IV fluids a few hours before we found out about the surgery being postponed. She soon discovered that she could ride her IV pole like a scooter and that the most fun way of getting around the ward was to stand on it and let Mummy push her around. I was relieved that she’d only had her breakfast a couple of hours before and hadn’t had a long period of being nil by mouth before finding out, as had happened when her Glenn was postponed.

Jessica scooting along on her IV pole



It is hard to have to go home and go through all the build-up yet again but it can’t be helped. We will continue to hold on to our faith that the surgery will happen at the right time for Jessica. We also found out after being told that Jessica’s surgery had to be cancelled that her bloods showed that her CRP levels were a little raised. This suggests that she might be brewing an infection. She and Sophie have both had coughs and colds recently (which they seem to be passing back and forth!) Hopefully having a little longer to wait will help her get rid of the winter bugs too.

Jessica with Godmummy Katy

We popped in to visit Godmummy Katy after leaving the hospital which helped to cheer Jessica up, before heading to Nanny's to pick up Sophie after her sleepover. It is lovely to have our family reunited again even though we know we have it all to come once again!


We will update again when we have been given a new date. Thank you again for keeping us in your thoughts and prayers so far. It helps so much to know that our little girl is surrounded by so much love.

Monday, 20 November 2017

Preparing for the Fontan

We’re back on Ocean Ward ready for Jessica’s Fontan tomorrow. It’s been a busy day full of the usual pre-op tests and getting ready for the surgery. Jessica has coped well with it all and has been enjoying collecting stickers for her sticker chart to show what a brave girl she is being! She and Sophie have also enjoyed playing together in the playroom.

Jessica having an echo


 Nanny, Auntie Fizz, Ebony and Erin and Godmummy Katy have all been in to visit Jessica today. Sophie has now gone for her sleepover at Nanny’s. Jessica was absolutely adorable when it was time for Sophie to go; giving her sister big hugs and telling her to “make sure you tell me all about your sleepover when you come back.” This was the hardest point of the day for us but we are sure that Sophie will have a lovely time with Nanny while we focus on being with Jessica.

Jessica and Sophie sitting on Jessica's bed


Jessica is second on the list for tomorrow. There is an urgent procedure due to take place first and we are not expecting her to go to theatre until around 1pm. We have also been warned that there is a possibility that Jessica’s surgery may have to be postponed if the first procedure takes longer than expected. Hopefully all will go well though and she will be able to have her Fontan tomorrow as planned.

Me, hubby, Jessica and Sophie


Thank you to everyone for all your thoughts and prayers so far. We will let you know how we get on tomorrow.

Thursday, 9 November 2017

A new date for the Fontan

We had a phone call this morning to let us know that Jessica’s Fontan has been re-booked for Tuesday 21st November. We will now be going in to Ocean Ward on Monday 20th ready for this. Jessica is very pleased to have a new date and to know how many sleeps she has to count down until her “sleepover” at the doctors’.


Me, hubby, Jessica and Sophie at Langley Park



We had a lovely afternoon yesterday at Langley Park to help cheer Jessica up after her disappointment of her “sleepover” being postponed. It was nice for us to be able to enjoy some family time together, especially as Michael has had to be away so much lately. Hopefully we will be able to make the most of having some family time now that things are quieter for him on the work front!


Please continue to keep us all in your thoughts and prayers as we start to prepare once again for Jessica’s surgery and her stay in hospital. We will update again when we go in on 20th November. 

Wednesday, 8 November 2017

Waiting for a new date

We should have been heading in to Southampton today. However, we have had a call this morning to let us know that Jessica’s surgery has had to be cancelled. Both Ocean Ward and PICU are very busy at the moment.


Jessica and Sophie sitting on a bench under a painting of a rainbow



We’ve been here before. Thankfully this time we are not on the ward ready to go to theatre having been nil by mouth for several hours though! Jessica is disappointed that she will have to wait a little longer for her sleepover but it can’t be helped. I have been reminding myself that God’s timing is perfect. This is not the right time for Jessica’s surgery. It will happen at the right time for her. We’re okay with this decision.



I’m hoping that we will hear back tomorrow with a new date. It could be that we have to wait a couple more weeks.


For now though, it’s back to school, back to normality and back to enjoying all the little moments. We’re a little in limbo once again but we’ll be ready for the new date when it comes.


Jessica on a rocking black swan at the playground




Thank you everyone for all your love, support and prayers so far. We will update again when we know more.