The story of Lincoln Istre
I was born on July 26, 2016 and I’m almost 2. Right after I entered the world I was sent away from my mommy to NICU because I was breathing too fast and they wanted to put me on oxygen. Once I got there other stuff started to go wrong. I just didn’t feel good. I wanted my mommy. There were so many people and wires and needles! The doctor pricked my heel for the newborn screen that Texas requires. That hurt. It was so hard to breathe. My bilirubin levels were increasing so they put me under a bright blue light. My glucose level was low. Then the doctor saw something that made him want to run an amino acid test. In the meantime, my breathing leveld out and they removed the tubes and I was able to breathe on my own so the doctors let me go home after a week in that place where those people kept wanting my blood. It was a blissful two days at home with my mommy and daddy….and then the phone rang. I could hear the panic in my mommy’s voice. She told my daddy that my test levels were high. I thought that was a good thing. While we were at my newborn follow up appointment I decided to give my mommy a blow-out present just to make her and daddy laugh. They laughed, I laughed….and then the phone rang again. This time, my daddy answered. I could hear him yelling at the lady on the other end about why we weren’t going to go to an emergency room because I had just got to go home and everything was fine. The lady said there was something wrong with one of the tests the doctor had run at the hospital and my numbers were high and that wasn’t good. So, mommy and daddy took me to my very first emergency room visit. OUCH! I was screaming because I wanted my mommy, but she was crying because I was crying. The doctors and nurses poked me so many times trying to find my veins. They didn’t understand why we were told to come to the emergency room because a blood draw wasn’t an “emergent” thing. But for me, turns out it was.
The phone rang the next day and my mommy and daddy were told they needed to go to Austin, Texas to see a special doctor. He told my mommy and daddy that my arginase amino acid was too high. That there was something wrong with my liver. If they didn’t take action right away, I could have developmental delays, physcial deformities, go into a coma and die. After the doctor said that, the room got very quiet. Mommy, look at me. I’m hungry. I’m right here. Mommy, don’t cry. I’m ok. I heard the doctor tell my mommy that mother nature knows best which meant I could still have mommy’s milk even though it was really high in protein. Apparently, that’s what I have a problem with. I can’t break down protein of any kind. When you eat food, your liver processes the protein and you release the ammonia through your pee. But I don’t. It goes back into my blood and makes me really sick. So sick I have to go to the hospital. I have to drink this special low protein formula everyday and take my medicine. If I dont, I go to the hospital. If I get sick, I go to the hospital. It’s a scary balancing act my mommy and daddy have to do everyday to keep me healthy.
In my first six months of life, I was in the hospital twice. None of us liked it. But mommy and daddy kept praying and not sleeping. Every two hours they had to feed me. All these people came to see me and I got lots of snuggles and made everyone smile. My mommy tells me I’m her sunshine everyday and I love getting to sit with her and daddy everynight. If my levels keep going up I need a liver transplant. And that’s one thing the doctor has told us every month, my levels keep rising. A transplant is the only thing that could make this go away, and even that’s not garunteed, but I know my mommy and daddy pray for me to get on that list every day. In the meantime, they worked really hard to get me to walk and I was walking by my first birthday. They keep trying to get me to talk but I like listening to them better. I have to eat really special food to try and keep my levels low. So far everything is good and we keep praying that we will have more good days than bad. I gotta have faith and not be afraid of the future. My mommy and daddy got me, and God’s got them. Together we can do anything.Â