written by heart dad Jerome
“Adalee was born 9 weeks early. All was going well, and she was soon transferred from York, where she was born, nearer to home in Scunthorpe. This is when they picked up on a slight heart murmur that would be monitored as she went on.
“She was in Scunthorpe for around a week and in that time, she had progressed so far. She was out of her incubator, into a cot and off most of her monitors. We were all ready to get her back home to Grimsby.
“It was on route to Grimsby when doctors received a result from a scan that had be done the evening before. It showed multiple issues with Adalee’s heart, but she was completely non-symptomatic. It showed holes in her heart, narrowing of her aorta and deformed valves.
“The doctors sat us down and said most likely we would have to prepare for the worst, however there were options for surgery. She was far too small to consider anything at the moment. She ended up back into her incubator and on all monitors again, but she wasn’t fazed. Adalee was less than 2kg and we were told that her minimum weight required for surgery would be 3kg.
Adalee was born 9 week early with a condition called Shone’s Complex.
“She kept proving everyone wrong and she kept growing and growing. She came off being tube fed and moved on to bottle feeds which they weren’t sure would happen due to her cleft lip, but she kept going and mastered it.
“We had a few rocky moments whilst in Grimsby but I’m sure she just liked to keep us on our toes!
“All the staff there were fantastic and in the 6 weeks we were there they just became family. As her weight was just about where it needed to be, Adalee dipped. She wasn’t gaining as she had been and generally was not being herself. After a few days of this, tests discovered that she also had a bleed on the brain which hadn’t been there previously.
“She is always referred to as a miracle baby and she’s the happiest miracle I’ve ever seen.”
“Because of changes in herself and the latest discovery, she was close enough for the Leeds team to have her shipped over for their assessments. She arrived in Leeds in the evening, and everyone was very welcoming. By the next day they had decided her surgery was going to be first thing the following day. This surgery was to remove the narrowing of her aorta to improve the blood flow to the rest of her body.
“The following day we got her all ready to go down to theatre. We got her in the gown, and we walked down to theatre with her. Leaving her there was hard and the next few hours felt so long as you can only think how she is getting on.
Adalee finally came home at 65 days old and is going from strength to strength.
“Around half past one we got the call to say that everything had gone to plan. She was making her way on to the Paediatric Intensive Care ward (PICU) and we could meet her there – this was the biggest relief!
“We went up and she was all ventilated. There were probes and cannulas everywhere, but she was okay that was the main thing.
“As time went on, she was having a line or a monitor removed, and after around three days she was sent down to the children’s heart ward (L51) where she recovered further, ready for discharge a few days later.
“At 65 days old we finally got to take Adalee home for the first time. She has continued to thrive, and she now has a great little personality, laugh and smile, no matter what’s thrown her way.
“She still has the brain bleed that’s under investigation she still has her shones complex which is the cause of all her heart issues. We recently found out that her surgery will most likely need redoing in the future, along with other possible heart surgeries to keep her going strong.
“All in all, she is a whirlwind in every way (constantly removing her feeding tube to add to the list!) but we wouldn’t change her.”
My daughter Adalee was my inspiration for doing a half marathon. She is always referred to by medical staff and general people as a miracle baby and she’s the happiest miracle I’ve ever seen. That’s why I put myself through this 13 mile trial, to help with the trials that she faces on a day to day basis.
“I’m such a proud dad and Adalee’s is the face I wanna see at the finish line, smiling and laughing at me for only giving myself two weeks to prep!”
We shouting a huge thank you to heart dad JEROME for sharing Adalee’s story and running the Humber Coastal Half Marathon to raise vital funds for CHSF! You are a true inspiration and have raised an awesome £610!
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