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 7 June 2016

A return to Ocean Ward for a cardiac catheter

We arrived back on Ocean Ward yesterday afternoon to prepare for Jessica’s cardiac catheter procedure today.  It was very busy on the ward yesterday and we weren’t sure for a while whether there was going to be a bed for us – thankfully they managed to fit us in.  Jessica was actually quite excited about going to hospital so it was a relief not to have to rearrange having prepared her for an admission.


It seems strange to be back on the ward again after two years – part of me feels like it has been such a long time since we were here last and yet in some ways it seems like was just yesterday.  It is lovely to see some familiar faces on the ward though and Jessica has been very happy to be here on the whole – there are plenty of toys to play with around the bedside and in the playroom and the Little Tikes cars are always a big hit!  




It’s also been lovely to have a few visits from friends too – with visits so far from Godmummy Katy, Helen, Nick and Vicky – thank you all for coming to see us and making our hospital stay a little more pleasant. One of the best things about being back in Southampton is the wonderful support we have here and I’m always blown away by just how kind everyone is.  Having struggled to find Jessica some front-buttoning pyjamas for our hospital stay (I only found one pair of boys pyjamas in the end), I was so touched when Helen arrived with a pretty pair of girl’s button-up pyjamas which were perfect – thank you so much. A huge thank you too to Nick and Charlie for providing somewhere for Michael and Sophie to stay while we are in hospital too.




Yesterday saw the usual pre-op bustle with various tests needing to be carried out.  The worst bits were the blood tests and cannulation attempts – Jessica has never had the easiest veins in the world and even with the magic cream, the multiple attempts required for a successful cannulation were very upsetting for her. Thankfully it all seemed to be forgotten very quickly once the cannulation was in. She needed to have IV fluids overnight as her haemoglobin levels are high (which is fairly common in children with cyanotic heart conditions) which means that she is more at risk of clotting when nil by mouth due to being dehydrated.



We managed to stay distracted this morning with visits to the playroom.  Jessica was quite excited when the trolley arrived and she got to ride in her “carriage” (as she called it) to the cath lab.  Whilst waiting, she found a Megasketcher drawing board and was quite happily drawing pictures of her dolly Kerry and a “shadow monster” whilst chatting away to the anaesthetist about what was happening in the picture which provided good distraction from everything happening.  She wasn’t too keen on the “sleepy milk” going in her arm as it felt cold but went off to sleep very quickly and fairly happily which was a relief.



There was the usual wait of a couple of hours or so while she was in the cath lab – with Sophie to distract us though, it didn’t feel nearly so long.  Once we had the call to say Jessica was back, I headed over to find a very unhappy little lady in need of her Mummy.  We had a nice snuggle together for the next hour or so, and gradually that beautiful smile started to return and Jessica started to feel much better again.



Results wise, things seem to be fairly encouraging.  Jessica’s pressures are good and her right pulmonary artery is a good size, although the left one is (and has always been) quite small.   It may be that this will grow a little more given time, but equally it may be that the increased blood flow that would result from the Fontan would help it to grow.  With regards to the next stage, the catheter indicates that the pressures are good enough for the Fontan to take place, but with things being fairly stable at present, there seems to be no urgency.  The team will discuss the results at their next team meeting and may make a suggestion for when it might take place but will also consider our thoughts on this too.  We’ll know a little more once the team meeting has taken place.



After a few hours to recover, Jessica was pretty much back to her usual happy self and keen to get back in the cars and go driving around the ward again! The site where the catheter was inserted in her groin is very bruised and the team are keeping an eye on this overnight but otherwise all seems to be well and we’re hoping to go home tomorrow.  Thank you to everyone for all of your thoughts and prayers today and we’ll keep you posted.
Little Hearts Big Love

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