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Noah's Story

BIRTH PHOTO
Memorial Hospital in Jacksonville, Florida at

8:32pm

I was born on February 11, 1999

I weighed 6 pounds 5 ounces

I was 19 1/2" long

My parents named me NOAH ALEXANDER

I was born at
My first few weeks at home were very restless. I fussed and cried a lot and my mom and dad didn't know why. Just by looking at me, you wouldn't know anything was wrong. When I was born, my mom asked the nurses why my head would bob as I breathed, they said immature central nervous system. At my 2-week appointment, my mom pointed out my head bobbing to the pediatrician and told him it seemed I was working too hard to breathe. He listened to my chest andback and wasn't able to detect anything.

Finally at 4-weeks, my mom was driving home and I was crying in my carseat inthe backseat. By the time my mom got home, I was very weak and my cries were very quiet, and I had turned an almost gray color. My mom and dad were pretty scared. They called the dr and he told them to try and wait until morning since it was pretty late and he thought we would have at least a 4 hour wait in emergency. My mom fed me and my color came back and I looked and felt better. She took me to the doctor the next morning, and he could now see that I was working too hard to breathe. He said it was borderline if I should go to the hospital, but to be safe, to go ahead and take me.

This is me my first week at home.
  OPEN HEART SURGERY
After my surgery, I spent 5 days in the PICU (Pediatric Intensive Care Unit). I had lots of tubes and wires connected to me and it made my parents sad to see me like that, but they knew it was necessary to make me better. I was then moved to the "Cardiac Floor" to finish recovering. On April 6, 1999, I was released from the hospital. My mom and dad were very happy on that day. My mom had stayed with me the whole time and even slept in my room at night. When I was in PICU, the hospital let my mom stay in one of their hotel rooms so she could visit me often. My mom didn't want to leave me, and she was nursing me as well, and knew that I wouldn't drink any formula because I hate the taste of it. My mom was real glad to be finally going home.

It's been almost 2-months since my surgery now and I am feeling much better. I'm not near as fussy and I even let my mom put me down sometimes. I weighed 8 pounds 9 ounces at my last check up. I am on two medications, Lasix and Aldactone. They both help get rid of the extra fluids. The dr said they will let me "outgrow" these. I don't mind them too much, but I'll be glad when I don't have to take them anymore.

GOING HOME
I was admitted to the hospital on March 13, 1999, just two days after I turned 1-month old. The first thing they did was a chest X-ray, and they thought I had pneumonia. That was the first of many tests. The medicine they gave me didn't seem to be doing anything, so they ran several more tests. They sucked snot out of my nose to test for several different viruses, all those came back negative.They called in a pulmonary specialist and a heart specialist. They did an EKG,doppler echo, ct scan, and last but not least, cardiac catheterization

GOING TO THE HOSPITAL
On March 25, 1999, I had open heart surgery. I had been diagnosed with scimitar syndrome with cardiac defects. I had a hole between the upper chambers of my heart (ASD), and a hole between the bottom chambers of my heart (VSD), and a duct that was supposed to close after I was born, but didn't (PDA). My right lung was so under-developed they weren't able to save it and had to remove my entire right lung. They put patches on the holes in my heart and closed that duct. They toldmy mom and dad that my left lung will grow larger than normal to compensate for my missing lung. They said I should be good as new.


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