We are back on Ocean Ward ready for Jessica's cardiac catheter
investigation tomorrow. Jessica is third on the list so will probably be
going to the cath lab sometime after 12 tomorrow. There was a little
concern earlier that the cardiac catheter might have to be postponed as
Jessica has had a bit of a cough recently (it has been off and on
throughout the winter so far) but as she has had no fever, Dr Hayes, who
will be one of the doctors performing the procedure tomorrow, has
decided to go ahead with the catheter.
It has been a busy day up on the ward with the usual battery of tests
being performed ahead of tomorrow's procedure. Jessica has had an echo,
ECG, blood taken (which she was very upset by, poor little love), been
weighed and measured (latest weight 11.6kg (25lb 8oz) height 82cm) and
had sats, heart rate and blood pressure checked (sats are about 79). In
between she has enjoyed riding up and down the ward in the Little Tikes
cars and had visits from Donna and Lily Jones (from Charlie Jones Foundation - lovely to finally meet them both after lots of online
chats), Sue the lovely hospital chaplain, our friend Gavin and godmummy
Katy.
Tomorrow's procedure is primarily to view Jessica's lung arteries and
aortic arch, measure pressures and check that they are growing well. It
may be that some ballooning will be needed if there is narrowing.
Daddy will be staying overnight with Jessica and Mummy and Sophie will
be staying with our friends Nick and Charlie as the family accommodation
near the hospital is full (thank you Nick and Charlie!). Jessica took a
little while to settle at bedtime as was quite overtired and tearful
after all the activity of the day but is now settled after lots of
cuddles. We will update again tomorrow and let you know how things go.
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.
Rooting for you all, love and prayers always,
ReplyDeleteNatalie, Simon, Olivia, Christopher & Annabelle x x x x x