Oh Mister Owen, you make our hearts melt. Is it okay if I nibble your cheek? Ok, I won’t but I want to! Not too long ago I came across this cutie on the Facebook. Immediately, I thought “Why are all of these battling CHD warriors so adorable? They seem to be the best looking kids. Maybe I’m just partial.” Maybe I AM just partial and I don’t care. Because look at those eyes! Blue as they ocean, they say. That face! This warrior is incredible. Here is Owen’s story, bravely told by his mom, Cassie:
A week later we met with Dr. Haye’s and had a third anatomical ultrasound. We had three different techs come in to see what was going on and the last one brought Dr. Haye’s in. So here Kevin and I are sitting in this little dark room while my stomach was being probed and guked up by ultrasound gel hearing the words “unusual”, “that’s strange”, “abnormal”, “stenotic”. Our panic level rose a great deal and I began to freak out asking if something was wrong with our baby. Immediately the doctor straightened up and the tech stopped and started cleaning up all the disgusting goop she and two others lobbed on my abdomen. Dr Hayes said “we will discuss the results in my office in a few minutes” and he left the room. The tech kept sighing and giving us looks of pity until a nurse came in and brought us to a little room with an overused leather love seat and an empty book shelf.
I was so upset and worried that I couldn’t think or see straight, what was only 5 minutes of waiting seemed like 5 hours. When we were summoned to his office he had this plastic model of the heart and he said “your baby has a hole in his ventricular septum and will need open heart surgery” It was like a foreign language, I had no idea what he was talking about. He continued to go on about valves and ventricles and blood flow, but I was not processing anything. Then he said they couldn’t do anything for us there and handed us a little pamphlet from Children’s hospital and their Fetal Concerns Program and told us they would call and have us enrolled and someone would call to schedule an appointment for a fetal echo and an ultrasound.
It was three weeks before we went down to Children’s hospital and those three weeks were full of buckets of tears. We finally received some useful information and hope after going down to Children’s. We were told that they have a very low infant mortality rate in surgery and that he was going to be at the best facility in the mid west for a congenital heart defect of this stature. They told us that Owen has Tricuspid Atresia, transposition of the great arteries, and hypoplastic right heart syndrome. Owen is an infant who was diagnosed in-utero with Tricuspid Atresia with a Transposition of the Greater Arteries. Tricuspid Atresia is a Congenital Heart Defect in which the Tricuspid Valve doesn’t form causing the right side of the heart to become under-developed. Transposition of the Greater Arteries is when the Aorta and the Pulmonary Artery are switched. We met with neonatalogists and pediatric cardiologists once a month and we also had weekly anatomy ultrasounds and biophysical profiles until Owen was born.
Since we live an hour and a half away, they recommended that I come and stay with family. I went down to Milwaukee to stay with my Aunt three weeks before my due date. Kevin stayed at home to work. I was still having my weekly bpp’s only at Children’s hospital. We scheduled them for every Friday so Kevin came down the first Friday I was there. They did the ultrasound and the Dr. was concerned about not seeing much amniotic fluid so she asked us if we could come in on Saturday morning(they are actually closed Saturday mornings so she had to let us in). She did the check and looked at me and said ” You are having a baby today!”. HA. Yeah right. Owen is so stubborn that he didn’t make his entrance for 39 hours! And by c-section too! As soon as they pulled him out I asked if I could have a cheeseburger. The whole not being able to have food thing for almost two days was horrible.
Owen was born on April 2nd, 2012. We saw Owen for about a minute after he was born and they took him down to the NICU and stitched me back up and sent me to recovery. After an hour in the recovery room, the nurses brought me down to the mother and baby unit so I could finally get some rest. It was unsure when Owen was going to be having his first surgery until he was properly examined and given an echo. It was decided that he would have the Norwood [procedure] at 3 days old. In the Norwood procedure they place a shunt between the Aorta and the Pulmonary Artery. I was still in the hospital, so we were able to hang out up in my hospital room instead of down in the waiting room for 8 hours. Everything went smoothly.
Owen spent the first month and a half of his life in the hospital and didn’t return (except for appointments) until he was almost 5 months old for his Glenn procedure, which was on August 28th, 2012. We were in the hospital for 5 days and we got to go home! Since then we have been enjoying home life!”
From Owen’s Cloud (his Facebook page):