My mom was induced at 39 weeks. The doctors didn’t even think we’d make it that far. We got to the hospital Monday morning, March 27. Mom was prepped and taken to a room. They gave her medicine and started an IV. After 16½ hours I was born early Tuesday morning, March 28. There was a room full of doctors. They were just standing around; looking at Mom, looking at me, looking at the clock. My breathing was shallow. I had a really soft, faint cry. I was looking around too. After several minutes, the doctors told my Mom and Dad to enjoy their time with me, I would probably pass away soon.
The doctor told Mom “he looks consistent with everything you’ve been told”. Mom asked for me. I laid on Mommy for the first time. Dad asked if someone could clean me up. One of the nurses did. After about an hour, Mom asked for bottles to feed me because I couldn’t latch to her. Instead of bottles, they brought Mom a syringe to drop infant formula in my mouth.
The entire stay folks came in saying I would “probably die soon“. They refused to confirm my diagnosis. My temperature was low; mom asked for blankets from the warmer. We didn’t see a lot of the normal doctors. We saw the bereavement teams and spoke with people about what we needed to do if I died. I had jaundice that they would’t treat. The doctors said it wasn’t necessary. I didn’t get newborn screens or any of “new baby” stuff.. I never left our room. I stayed with Mommy the entire time and that was the best unplanned plan EVER!
I had my first surgery when I was about 7 months old. I was born with bilateral cleft lip and palate; and the only way to close it is by having surgery; a lot of them. The first doctor we saw said he could close it using a (Latham) device. It would pull my face together and make the surgery easier. He had my mouth fitted for the device and surgery was scheduled.
We had to be at the hospital really early in the morning. I was prepped and taken from my parents. After a few hours, the doctor had the device in my mouth, he gave my Mom a screwdriver that she and my Dad would use to turn the screw in the back of my throat, and we were supposed to head home. While in recovery I started having troubled breathing. We later learned that my airway is super tiny and the device was blocking my air flow.
The doctors where we live were worried because I wasn’t breathing good. One of them ask my Mom, “why did you come to a hospital that doesn’t have a cleft team?” Mom: “we didn’t know you didn’t have a cleft team; this is where our doctor told us to come”. An outpatient surgery turned into an overnight stay. Overnight turned into 5 days before being airlifted to Children’s Hospital of Alabama. Because now, I can’t breathe and I’m bleeding from my mouth.
The doctors at Children’s said we should take the device out and start over; especially if that’s when my troubled breathing started. The device was removed and I started breathing good again! Now we know, my tiny airway can’t handle obstructions. I was given a tube feeds with an occasional bottle. After 6 more days in the hospital, a few Barium Swallow tests, and several labs, I was ready to be discharged home!
Mom and Dad found out about me in the Summer 2016. Half way into the pregnancy, the doctors said I had Trisomy 18. They said it was 99% accurate too. I would be severely delayed, have a bunch of health issues, and would probably die. Mom was scared. Dad was strong. My brothers and sisters didn’t know what exactly was happening; just that I would be really fragile and sick.
Mom wasn’t eating well. Her blood pressure was high. Her doctors finally put her on bed rest. She quit her job because she wanted to keep me safe. After weeks on bed rest, we got a new doctor because our old doctor didn’t think our (local) hospital could handle my diagnosis. We went in early one Monday morning. The doctors gave Mom medicine to have me. I was born March 28; the day after one of my big brothers (Josiah).
We stayed at the hospital for a few days before coming home with hospice. I met 2 of my 3 brothers and my 1 sister. My biggest brother was at school, in college. The hospital had the special nurses meet us at our house. They came a few times a week in the beginning; then just twice a week.
Mom and Dad had to learn how to feed me. I have a long list of issues. The doctors said I was missing parts of my brain, my esophagus was offline, my heart was messed up; I had clinched hands, rocker bottom feet, one working kidney, my liver was weird, and I had a hernia. I have a few more things but we didn’t know about them until later. Our hospice nurses came for 6 months. They discharged me when I was almost 7 months old because I was doing good. We were okay with that!