I started my life in the NICU. I was in nothing but a diaper on a warming bed with an overhead light. I had my eyes closed when my mom and dad came in to see me. Mommy said that she thought I needed to hear their voices. (I did.) She told me that each time her and Daddy came in, they had to "scrub up" for 3 minutes before they could touch me. They also had to wear hospital gowns. Mommy said that each time she came in to see me she "lost it" all over again.
You all know by now that I wasn't able to breathe on my own, I needed a machine to give me my breaths and 100% oxygen. It was called an infant ventilator. There was tape across my mouth to hold the tube in place. I was hooked up to a monitor to record my vital life signs, like heartbeat and oxygen in my blood. I was given nutrients with an infusion pump. Mommy said my stomach was covered with wires, as if they were just another part of my body. Mommy and daddy always sat at each end of my bed and held my hands with theirs. Mommy said that I was struggling to grasp their hands. (I was because I couldn't do it but wanted to.) The nurses told Mommy & Daddy that when my oxygen monitor read 100%, it could have meant that I was happy because I knew that they were there. Mommy & Daddy always kissed me goodnight before leaving me there in that hospital. They always made sure that they didn't leave before I was asleep. Mommy said that she came down to the NICU one day and found me on a different ventilator then the one I was put on when I was born. The doctor told her and Daddy that it was called a "jet ventilator". He said that I needed this one because the infant ventilator wasn't working for me. I needed more breaths and this one gave me 420 breaths per minute. Mommy said that the jet ventilator made my body vibrate. I had to be suctioned a lot...that was to get rid of all my secretions. When I was "suctioned", a long catheter was placed into my mouth through my trach tube and down into my lungs to "suck up" all of my mucus. Mommy said that sometimes it was so thick that I couldn't get oxygen from the ventilator because the mucus was plugging up my airway. That caused the pulse oximeter (which is the machine that was monitoring my oxygen levels)to drop to the 60's and 70's. She told me that they had to suction me to clear my airway or they would lose me. Mommy always turned away from looking at me because she was scared when this happened. (It happened a lot.) Eventually, she and Daddy would have to learn to do this in order to bring me home. I loved it when the nurses finally let Mommy & Daddy hold me. Mommy said that I just started opening my eyes and usually when the nurse put me in Mommy's arms, I would open and then close my eyes.
One day Mommy and Daddy came in and I was getting an EKG. The nurse told Mommy and Daddy that it showed my lungs had grown to normal size. The next day the hospital called Mommy & Daddy at home to let them know that I was able to go off the jet ventilator. I could breathe a little on my own but I still needed help of a ventilator because my muscles weren't strong enough to do the work myself. When the doctor saw that I could breathe a little on my own, they put me on nasal CPAP for awhile to see how I would do with it. Mommy said I looked great because she finally got to see me without tubes and tape marks across my mouth.
Later that day, they took me out of the warming bed and put me in an isolette. It was more private and cozy for me.
A few days later, Daddy had to go back to work, but Mommy was able to come up and see me still. Mommy said that she came in one day and the nurse told her that I was looking real pale and that they needed to give me a blood transfusion.
Well, a day or two passed for me being off the ventilator and still on CPAP, but I started having lots of trouble breathing and then I just couldn't do it anymore. I lost consciousness but the doctor brought me back. Mommy said that the doctors and nurses made her and Daddy leave the room when that happened to me because they didn't want them to see me in trouble like that. I was stable when the nurse let them back in to see me. The nurse told Mommy and Daddy that it was probably a mucus plug clogging my airway and she said that I didn't have enough strength to cough it up. She said that I was using all my strength on trying to breathe.
A few days later the doctors told Mommy & Daddy that there was nothing else that they could do for me. The doctor told Mommy & Daddy that there was a neurologist at Thomas Jefferson University Hospital that could give me a muscle biopsy (that's where they take a sample of my muscle and examine it). They didn't do that at this hospital that I was in, so they had to transfer me to Thomas Jefferson Hospital.
The day had come for me to leave this hospital that I was born in. The nurses even dressed me up in an outfit and a hat that Mommy & Daddy bought for me when I was born. Mommy said that she was so glad that I finally could wear them.
A little bit later the people came from the other hospital that I was going to. Mommy said they were called EMT's. They even brought me the same isolette like the one that I used here. The nurses put me in the new isolette while Mommy and Daddy signed some papers and then they came over to me and gave me a kiss. I love my Mommy and Daddy. They were the people I was working hard on trying to breathe for, but Mommy said that I looked scared and was wondering what was happening. (I was.) Mommy said that she got inside the car and Daddy waited for the EMT's to get me in the ambulance that was going to take me to the new hospital. She looked out her window and saw that the EMT's almost tipped me and the isolette over, but Daddy and the EMT's caught me and got me inside the ambulance. Daddy gave me another kiss and went to the car to follow the ambulance...and then we were off to the new hospital..... You can read about my time there if you come back here to my blog.