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, 10 January 2018

Post-Fontan recovery: Day 12 (Ocean Ward)

Jessica had a really good day yesterday. She had a lovely morning and enjoyed making Frozen characters out of Lego during her school session in the morning and having a visit from Godmummy Katy just before lunch. Her appetite is starting to improve and she is beginning to show an interest in food again.

Jessica making Frozen characters out of Lego

She wasn’t too keen on having her nasal prongs changed over so she could move off the opti-flow oxygen and on to normal oxygen. Her ECG wires have all been removed as she no longer needs continuous ECG monitoring. Having the tubes and wires reduced a little more meant that Jessica was able to get up and go for her first walk around the ward pushing her drain, heparin and oxygen around with her in a trolley. She made a beeline for the playroom. It made us laugh that the one toy she wanted to play with there was another trolley!


Jessica with her trolley in the playroom


We were quite impressed by how speedy Jessica was getting around the ward. I almost had to run to keep up with her! A trip to the playroom and back was quite enough for a first walk though and she was quite happy to get back into her bed when we returned to high care.


Mummy and Jessica in the playroom


Being able to get up and about was a big step in itself but the big steps forward didn’t stop there. Later that evening, Jessica was moved out of high care and into Dolphin bay. Another step closer to getting home again. It meant that Mummy was able to sleep next to her bed (no more doing shifts with Daddy so that one of us can sit Jessica overnight). It also means that we will be able to have Sophie with us again soon, as she can stay with Daddy in the Ronald McDonald house while Mummy stays on the ward with Jessica. Hopefully she can come up to the hospital tomorrow. We’re looking forward to seeing our baby girl again after two weeks of being apart.

No comments:

Post a Comment