This is me with my dad, my grandmother Nan, Uncle Darrell, and Auntie Joy. Everyone was so excited. No one had any idea how sick I was.
It was a normal pregnancy, with no indication that anything was wrong.
A little while after I was born, the nurse came in to say they were moving me under the warming lamp because I was cold. My parents weren't too concerned. My mom's main concern was that they not feed me with a bottle because she was breastfeeding. That's what it said in all of her books, to make sure the nurses don't feed your baby with a bottle! That really should have been the least of their worries! Then they came in and said they could not warm me up. My parents were a little more worried at this point.
A new doctor came in at 11 p.m. and said they had to take me to Texas Children's Hospital. My parents were very sad and scared at this point. My mom remembers all these people coming in from TCH with forms to fill out and sign. They were very nice. My parents were overwhelmed. Mom had to stay at the hospital because she had just given birth, and Dad followed the Kangaroo Crew to TCH. Nobody was sure of what was wrong with me, just that I was slowly dying.
From the NICU (Neonatal Intensive Care Unit). It took about 30 minutes to get me into my mom's lap, with all the cords and wires and machines. My mom said you would think it would be a loud room with all those babies crying, but it's actually very quiet because none of them can cry out because they have tubes down their throats.
At this point, they had figured out it was my heart. It was all the same to my parents, because they still had no idea what was going on.
Can you see me?
This is in the Cardiovascular Intensive Care Unit, or CVICU. I had a BT shunt put in through my back. That's why there's a scar on my back. My mom's friend, Amy Curry, brought her books to read to me. Mom also talked to me a lot. She said she felt kinda silly reading and talking to me because I wasn't moving much and only occasionally opening my eyes, but she did it anyway. She figured it couldn't hurt.
They explained to my parents what was wrong with me. I was born with a congenital heart defect called pulmonary atresia. It actually has a longer name than that but we can never remember it all. My mom told them she was not good in science and knew where the heart was, but that was about it. They told her I was born with three chambers instead of four because I have a bad valve. That's the valve I'm going to have replaced in August. I also have another bad valve, but they're not sure what they are going to do with that valve yet. They watch me very closely.
This is on the recovery floor. We were on our way to being released from the hospital but got a little sidetracked.
The first night we were on the recovery floor after leaving CVICU, I was having a hard time breathing. Grandma Doe was there to help my mom because my dad had to go to work the next day. We had been in the hospital for about 3 weeks. My mom called the doctor, a resident, several times throughout the night because I was struggling so hard to breathe. The doctor ordered breathing treatments. They didn't help. None of us slept much. My mom remembers thinking that no one should have to work this hard to breathe.
The doctor called for an X-ray. It was early in the morning. We were tired! Mom wanted to take me and let Grandma Doe sleep. I was in Mom's lap in the wheelchair while she was being pushed by an X-ray tech. On the way, Mom said she was happy because I had finally calmed down. The medicine was working! I looked so peaceful, she said. In the elevator, though, she realized why I looked so peaceful. I wasn't breathing. Later they decided I had experienced a heart attack. She started screaming. The tech didn't know what to do. The doors opened, and my mom was screaming, "My baby's not breathing! My baby's not breathing!" A nurse took me from her arms and whisked me to the ER. My mom was quickly wheeled down and prayed outside the room where I was. None of the doctors or nurses knew anything about me. They were yelling questions to my mom, and my mom was answering them as best she could. A chaplain was called. My dad rushed to the hospital. They put us in a private room to say goodbye to me.
Luckily, they didn't have to do that! I lived! They ran all these tests to see if there would be any long term consequences. Everything came back okay. They also told my mom and dad they would have to wait and see how I developed. So far, so good!
We went back to the recovery floor after a few more days in CVICU for observation. My mom said if that doctor came into the room, she wasn't sure what she would have done. She was still angry she had let me get that bad. She still says to this day it doesn't take a medical degree to see when a baby can't breathe.
I became known as "The Elevator Baby" at Texas Children's Hospital after my ordeal.
I look kind of creepy with the IV in my head. They had to do that because they had used all my other veins. Check out those cheeks, though! I'm cute!
Chilling on the recovery floor.
Grandma Doe came to the hospital quite a bit. Lots of other people came, too, to see me and pray over me.
My favorite nurse, Paula Garroutte. She helped Mom and Dad when I came home.
The tube is in my nose to feed me. They thought the heart attack was caused by aspirating, which is a fancy way of saying I choked. They weren't sure if I could swallow. The tube went in to avoid any other aspirations. I went to physical therapy to learn how to eat. Turns out, I didn't have a problem with it! I pulled it out a month after we got home and was fine.
Finally, leaving the hospital to go home! Mom said she was scared to death to take me home.
YAY! Home!
