Orion’s Story
O Warrior Stories
Written by: Melissa Brooks
August 5th is a day I will never forget, I can remember being excited about his 20 week scan, it was the first one his dad was going to be able to make it to. However, that excitement turned into sadness very quickly. As the tech wrapped up she excused herself to “go make sure the doctor didn’t need anything else for the ultrasound” little did I know at that moment our lives were about to change. A short time later the doctor came in and began to explain what he had saw an omphaloce and some other concerns. I had no idea what he was even explaining even as he showed me pictures.
As I left that doctor’s appointment I broke down in the middle of the parking garage lot, My excitement went to fear then to sadness. During this time I decided against an amniocentesis, instead opting for genetic testing when he was born.
At 34 weeks, preterm labor started. This kept me in and out of Vanderbilt for the next two weeks. Orion Frey Larkins arrived on 11/28/2023 at 36 weeks. He weighed 6lbs 6oz. was 19.6 inches long and had a head full of hair! He was born with a large omphalocele (containing liver and intestines), a ventricular septal defect, and a morgagni diaphragmatic hernia. Genetic testing was done and everything came back clear. It is now believed he has an incomplete Pentalogy of Cantrell.
Orion is currently in the NICU where he is working on breathing, which has had its setbacks. Recently weaning off of high flow oxygen became a problem, with more test it was found he has bronchomalacia. Therefore, with this we are simply waiting for him to grow.
Reflecting on the past 6 months, I know Orion’s journey is a special one. There are so many hurdles ahead and also many firsts he will celebrate, but I wouldn’t change any of the challenges for anything they are simply a part of his story.
UPDATE: May 2025
Orion has officially been home from the NICU for 9 months now, after 246 days at Vanderbilt. Now that he is home we have had many exciting things to celebrate. Our biggest hurdle was his open heart surgery in January to close his VSD which he was able to prove his team wrong and come home after only 6 days (they were predicting months). After his heart repair we were able to take our first big trip to Puerto Rico with family. We also spent Halloween, Thanksgiving, Christmas and his first birthday at home this year. Orion is still waiting for his omphalocele repair which is TBD and we should know in the next few weeks when that will occur or a timeline at least. But for now he is doing well and learning lots of new things!
