This is "Jaxon's Journey"....
Jaxon was born on 11/3/2017.
He has spent his entire 3 1/2 months in ICU in the Royal Childrens Hospital in Melbourne and has had multiple surgeries, scans and tests during this time.
At Marnie's 20 week scan, she was told that her baby had a condition called "Ventricularmegaly", which is a condition where there is too much fluid in the ventricles in the brain. Andy and Marnie were told that their baby could be born with some disabilities and that he would need to have an operation to place shunts in the ventricals to drain the fluid. For a first time Mum, this was so frightening for Marnie.
At 38 weeks Marnie was induced and after a very long and difficult labour, Jaxon was born on 11/3/17.
Four days after Jaxon was born, he developed breathing problems. At first the doctors thought he had a punctured lung and that it would mend, but after 7 days his condition had worsened and he was put into ICU and a detailed ultrasound was performed on him. The doctors found he had a heart condition called "Coarctation of the Aorta" which is a severe narrowing of the aorta, the main artery that carries blood to the body.
On the 20th March, Jaxon was sedated and put on a ventilator and then transported to the Royal Childrens Hospital where he was stabilised and prepped for surgery. The doctors would dissect the aorta from his heart, remove the narrow section and then reattach the aorta back to the heart. They had also found some small holes in his heart which they were going to repair at the same time.
The surgery took 6 long hours and was a success, however, Jaxon wasn't as stable as he should have been after the surgery so the doctor had to open his chest again to drain the fluid that was building up around his heart.
For 48 hours, he lay with his chest open with multiple drainage tubes hanging out of him. It was so heartbreaking to see him like that and not be able to hold him.
After his chest was closed up, he began to improve for a few days.
On the 31st March, Jaxon developed heart and breathing problems again and he had his 2nd lot of heart surgery, this time to remove the bindings from the holes in the heart as the holes had somehow repaired themselves.
Five days later on the 5th April, Jaxon was still not improving as he should have been and underwent his 3rd major surgery to move his airways to a better position as the aorta was now touching the airways and causing his breathing problems.
After many unsuccessful attempts to take him off the ventilator, Jaxon had his 4th lot of surgery on the 18th April to move the aorta away from the bronchi(airway to the lung). Once this operation was performed, he began to improve and after five weeks Andy and Marnie were finally able to hold and cuddle their new baby although he was still attached to machines and the ventilator.
After all the operations and failed extubations, the doctors found that Jaxon was now suffering from "Bronchomalacia" which is floppiness in the bronchial tube, and would require a tracheostomy to help with his breathing. So on the 27th April, Jaxon had his 5th lot of surgery to perform a tracheostomy.
Jaxon has had multiple procedures as well as 5 lots of surgery. Some of the procedures include MRI's, ultrasounds, Xrays, blood tests, bronchoscopy's and CT Scans.
The fluid in his brain is still an issue and he may still need surgery to fix this. Jaxon is still fighting infections which the doctors are trying to resolve and he will need ongoing care for quite some time yet.
When he is well enough to come home he will need care 24/7. Andy and Marnie will also need to purchase a special pram to carry him and his equipment in when they go out.
Andy has not been able to work since Jaxon was born as he and Marnie have spent each day at the hospital with Jaxon. Each day they make the drive from Geelong to Melbourne to be with their baby boy.
This has had a huge impact on all our family's lives, both financially and emotionally.
As a Nanna(and a Mum), I am writing on behalf of all our family as it is heartbreaking to see Jaxon so sick. He has endured so much in his short little life and is truly a little fighter.
I would love to invite all my family and friends to share this post with their family and friends and any donation that can be made to help Andy, Marnie and Jaxon on their journey, no matter how small, would be greatly appreciated.
Thankyou for reading and sharing "Jaxon's Journey".
- Jordan Kearin
- Rebecca Behan
- Surhey Tuck
- Amelia Koroma
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