Thursday, September 10, 2009
One day at a time!
While my mom was still in the hospital, my sister Shahala and dad traveled down to see me and to bring the colostrum that mom pumped for me. Shahala and dad were both allowed to hold me (Sabrina) and stay with me for quite a while. My older brother Kyle stayed home to tend my other siblings, although they would have all liked to go down they weren't able to. My mom was released from the hospital after a couple of days and came to see me! She was told all about my diagnosis by my genectics doctor and a genectic counsler. Mom learned about the programs that were out their to help her take care of me. They didn't want my mom to try to nurse me, they told her that trisomy 18 babys don't have a strong enough suction to nurse. Boy were they wrong, after my mom got me latched on I nursed really well. Before this they had feed me once with a tube that went to my stomach and then bottles. This really helped me to do better, to nurse and be with my family. My mom had to go home in the evening, so it was back to bottles but she left more milk, so it was all good! I wasn't supposed to go home for two weeks but they called my parents and told them I was doing good and had gained enough weight that I could come home! Two days later I was on my way home! I was on 2 liters of oxygen and needed a meter that measured my oxygen level and they couldn't go home with me. A company met me at my house after the long drive home to bring my equiptment. The ride home was hard I cried alot, and mom and dad had to stop to change me and feed me. When we got home my brother Kyle was nervous about meeting me, but he just feel in love with me when he looked into my eyes. He held me while they set up my oxygen and monitor. Kyle was 16 when I came home, their were a few kids with disablities at his school and he was nice to them but he was unsure about how he would feel about me. Kyle and Shahala helped my mom take care of me a lot. My other brothers liked taking turns with me but they were still young and need help when they held me. They held me and talked to me and pushed the button on my monitor a lot. When I first came home my oxygen level didn't stay over 85 as much as it should and when it went down a loud alarm would sound. The doctors had told my mom not to take me anywhere except to my pediatrian for a while, my immune system was very weak. My mom continued to nurse me, but my body was slow to adapt and to gain weight. My pediatrian wanted to see me every three days for the first month, they would take me right to a room as soon as I got their because they knew my immune system was very weak. My doctor was so good (he was there when I was born) he ask his staff to read up on trisomy 18 so they would be prepared for me and they were all so nice.