Katelyn's Story
April 7, 1997, It seemed like I had been pregnant forever. I was just tired of being big and not sleeping through the night. I never had one problem with the pregnancy. This pregnancy was my first and so easy! I had a good day that day! I was feeling unbelieveably good and decided that I would get the car cleaned and vacuumed, for the new arrival of Katelyn Rose. Her name was picked months in advance. After I washed the car and vacuumed it all out I started feeling a little pressure, so I called the Dr. They told me to come in to check it out, but told me that I would most likely be going back home. I called my husband at work and then drove myself to pick him up and then drove to the hospital. I parked the car in the parking lot and walked myself in. Hearing it the whole way from my husband of why I didn't pull up and get out and then he could have parked the car! But, I insisted that I was not in labor. I got to the room rather quickly and then I knew I was! Pain! The nurses laughed and told me that it was probably false labor. I got my clothes off and then was checked by the Dr. They then cut my "out patient" band off of my arm and proceeded to put on a new one. Then told my husband that he was about to be a dad.
Once I had the epidoral, that was when it all started. They flipped me on my side and gave me oxygen. The baby's heart rate had dropped and she was stressed. Once I started to push, they told me that we had to get her out! Katelyn Rose was born at 11:11pm
They put her on the table under the lamps and started to examine her. There was a Pediatrician there in the room as soon as she was out! They said that her lips were blue and she wasn't getting enough oxygen and they were taking her for tests and to give her oxygen. 2 hrs later the Dr. came into the room and told me that he didn't know what was wrong with my daughter so, he was sending her to somebody that would know! (I gave that Dr. all the credit in the world, he actually said that he didn't know! He is still her Ped.) LIFE-FLIGHT! A nurse walked into the room and asked me the most frightful words I have ever heard for a first time new mother to hear...."Would you like us to baptize her?"
1/2 hour later I watched as they brought this tiny baby in my room, that little face, and one hand sticking out from a white blanket bundled around her. She was encased in a flight box for the helicopter. I put my hand into the box and she grasped my finger. That was the first time I had gotten to touch my daughter. Then they took her away.
In the morning there was a fight in my room, between me and what seemed to like the whole hospital staff and my family. During the labor there was tremendous damage done and my Dr. didn't want to sign release papers for me to go. They were afraid that something would happen to me. In the end, I won! The Dr signed the release papers and gave me a perscription for pain. I was on my way to Children's hospital of Pittsburgh at 8:10am.
I don't remeber the ride in except for the fact of getting lost! Once we made it there, I stood for a moment at the amazement! I had never seen anything like it! I took a deep breath, my hand held tightly by my husband, my mothers arm around my waist and my father and little brother leading the way. We stepped into the unknown!
Walking through the NICU (Neonatal Instensive Care Unit), I was astonished at what I saw! So many babies, so sick, lights flashing and the sound of the monitors beeping every second. We got to Katelyn's bedside and...
BOOM! Specialists everywhere to talk to you! Cardiologists, ENT's, Geneticists, Nurses and Aides. My mind wanted to blow! Finally I sat down at my daughter's bedside and said hello for the first time. A tiny tube running from her bedside across her cheek and down her nose, oxygen in her face, and a light clip on her tiny finger for the pulse ox. and then I touched that small rosey cheek and finally got to say..."Mommy's Here!" Then I looked up and saw taped to a post on the crib a sign that said "DEAF". Then my husband spoke and this little girl that I just met opened one eye. For days they ran test after test and told me things that I as a new mother just couldn't comprehend! My child was deaf, has heart problems, her fingers were not normal, her features very small, she has a high arched palate and double uvulla in her throat and she doesn't have the sucking reflex. Over the days of being in the NICU I learned and saw many things. I wanted her home! The Dr's told me that I would have to learn how to put the tube down her nose and into her stomach to feed her before I could take her home. I learned quick! In my opinion all she needed was to go home with her mother. After all of the tests and her hands and feet so purple from all of the needle pricks for blood (she didn't have a finger or toe or heal that didn't have at least four pricks in each one) and Dr's telling me all that was wrong with her, but she was leaving the hospital a puzzle to them! When I got my daughter home all she wanted was to be left alone in her playpen. She didn't like to be held. Her favorite thing was to lay on her back and watch her lights and sounds play gym. Then I noticed the most remarkable thing! The dogs bark startled her. Knocks on the door and sounds from the TV. "She wasn't deaf!" Then I thought to myself what else could they be wrong about! Thinking back to the tube in her nose..They were force feeding her 2cc's over what a normal child eats! Well, if her belly was always full, why would she suck on a bottle? So, when it was time to change the tube I left it out for a little while. She loved the feeling and then I waited. She got hungry and I put a bottle in her mouth. Of course, It didn't go quite so well, so I improvised and cut the nipple. She took some on her own. Not enough to satisfy her though, so I put the tube back in! When the home nurse came to check on her I told her about it and we together sat a figured out how to cut the nipple just right for Katelyn. Katelyn then started pulling the tube out on her own. I called the home nurse and her advise was to listen to the child! She said that a mother just knows things and to let it take over. I never put the tube back in again! Within two weeks of being home, Katelyn was eatting on her own!
August 29, 1997, Katelyn and I were sitting on the couch watching TV. Neither of us doing anything. Katelyn started to sweat profusely. I called the Dr. Knowing in the back of my mind that Katelyn has a small hole in the middle of her heart that we are waiting on to see if it would close on it's own and that sweating can mean heart failure. There was a heart specialist there waiting for us when we arrived at the Dr's. He listened for what seemed an eternity! He sent her to a cardiologist in children's of Pittsburgh. After long hours of testing my husband and I were called into a special room! He went over the tests with us and told us that Katelyn's VSD was still there, but other problems had arose. A muscle mass was closing off the flow of blood to her heart and surgery was needed to correct this. The last thing I remember hearing was "Open Heart Surgery."
Sept. 17th 1997 They only way to descibe the feeling of that morning was I never want to feel it again! For those of you who have gone through it I know you understand this! You go through so many rooms and questions. I remember the anesthesiologist coming in to talk to us. He tried to make Katelyn laugh and Katelyn just gave him a smirk! He told me that he thought she had paralysis on half of her face. I laughed at him. He said that only half of her mouth went up into a smile....my respose...Katelyn thought you were only half funny! Through all of this Katelyn had grown one heck of an attitude. We called her the girl of a thousand faces. She had a face for everything! I'm proud to say that she has my attitude! I was sitting in the prep room for surgery holding my 5 month old daughter in my arms, tears streaming down my face as I thought of the things that could go wrong. At this point I felt like running out of there with my daughter in my arms not wanting her to have to go through the pain, wanting to sheild her from what was to come, wanting to take the pain for her, but in reality knowing that if she didn't have the surgery that she would not make it! They came and as they took her from my arms, I told her that I loved her and that I would see her in a little while, they carried back through two doors that swung wide and then I watched as they carried my daughter away and the doors shut behind them.
Waiting....that was the most horrific feeling. Not knowing and wanting to run in to see what was happening and trying to hold yourself back. Finally the Surgeon came to talk to my husband and I. Again, my hand held tightly by my husband and my family sitting in the waiting room with us. Katelyn was out of surgery and we could see her in an hour. Walking into the PICU (Pediatric Intensive Care Unit) her nurse leading the way, I stoped at the foot of Katelyn's bed. It didn't look like Katelyn. Her face puffed, her eyes so swollen that they were purple, her limbs so swollen that you could hardly tell her fingers parted, under a heat lamp with a fan blowing on her with tubes into what looked like every inch of her torso. She was hooked upto 10 different machines. I almost fainted! The nurse had to take me out of the unit! So unprepared for what I was seeing. In shock and horror I walked out! My parents went into see her and came out quicker than I and my husband. I sat down for a few moments to register everything. Everything that I had seen flashing through my mind. I gave myself time to get it together and cried it out, then I went back in to her bedside. I talk to her a little in a quiet voice and told her that I was there and I loved her "My precious Angel." One lone tear streaked her face. At this point I noticed how helpless I felt. I couldn't hold her, I couldn't comfort her, I couldn't take the pain away, and I couldn't take the fear away! Her little life was in the hands of others and that is the most scarriest feeling! Even though you know that they know what to do and know how to help her, it doesn't make it any easier! My husband had to go back to work and my mother called off work to stay with me in the hospital. My little brother at the age of twelve would not leave the hospital until he could see Katelyn. Not only was Katelyn his neice, but she was also his God-daughter. It was that fact that got a twelve year old through the doors of the PICU. I never saw such a look of terror when he stepped upto her bedside and saw her. We tried to warn him of what he would see and tried talk him out of it, but nothing doing, he had to see his God - daughter before he left.
During this period in the PICU she was opened up four times to save her life. The swelling of her heart in her chest was causing her to go into heart failure. My husband came to the hospital for the weekend to stay with me and got me out of the hospital for a little while to get something to eat and that is when we found the tatto place. I got my tattoo. I think I was still in shock because I never felt a thing! During this period in the hospital, you talk to other parents and they talk to you and you share stories of your children and go through the most horrific time of your life with strangers that somehow don't feel like strangers at all! We made up a somewhat comfort group to each other. You are there with them through the rough times and the triumphs of kids striving to live and somehow your mind turns to goop. I couldn't tell you where I had just set my purse, but I could tell you what one of the parents childs ICP's (inter cranial pressure) stats for the whole day!
When they moved Katelyn to her own room on another floor, it was the happiest day! I finally got to hold and rock my daughter. After a week of being in her own room and running test after test I made sure that they did another hearing test on her. I told them that she was not deaf and she could hear. They did another test and I'll be! She only had a mild hearing loss in her left ear. Then it was time to get her back off the feeding tube that she had come to enjoy, because she didn't have to work to eat! Finally success! And the day came when she was to be released! One of the parents met me in the parking garage to say good-bye and I hugged her tightly and we said good-bye. When I got into the car a feeling of relief swept over me that it was over and I sobbed! Little to understand that it was just the beginning of new things to come for Katelyn.
