Featured cherub of the week is Fenyx Warren. Fenyx is the son of our CDH International’s Utah Ambassador, Monica Warren. Monica had this to share about Fenyx:
” I found out when I was 18 weeks pregnant on September 4th 2012 that Fenyx was going to be born with CDH. We probably should have expected something since it runs on both sides of our families. However, with Fenyx being my third baby we thought we were lucky and had missed it. My husband had a sister that passed away at two days old and my aunt had a baby that passed away a couple of hours after birth that both had CDH.
The day I got my ultrasound we were there a lot longer than normal and a couple of hours later they called us to come back in because they wanted to make sure they got everything. The next day my doctor called me and told me of the diagnosis. I was immediately put on bed rest and was given the name of a high risk doctor in my area. I made an appointment with him for the following week. At that doctor’s appointment I think it finally hit me just how serious of a situation we were in because the doctor told me one of my options was to terminate. I sat and cried for days.
When I got to thirty four weeks I had to have weekly stress tests to make sure Fenyx was doing okay. And two weeks before he was born I had to have him turned because they did not want me to have a C-section and he was transverse.
Fenyx was born at 39 weeks and after 15 hours of labor he was born. Right after he was born, I did not get to see him but he let out a cry and from then on I knew he was going to fight. They put him through the NICU window and I did not see him until three hours later when they were walking him across the bridge to Primary Children’s Hospital.
Fenyx had surgery to fix his hernia when he was two days old. I got to hold him when he was nine days old and he came home when he was six weeks old. He has never learned how to eat by mouth and had a NG tube for almost a year and then got the G tube when he was one. He also has very severe reflux and had to have a nissen fundlipication done at the same time he had his G-tube done. He has never eaten by mouth and has his G-tube still in. We do feeding therapy every two weeks. However, besides his not eating and him being super skinny he is one of the most active kids I know. We are truly blessed. He is the very first survivor on both sides of our families to have survived CDH. His name which means rising from the ashes is truly him. We are so very lucky to have him in our lives.”