Kami Dawson
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Kami was born at 32 weeks gestation by emergency c-section. She was what they called a "floppy baby". She was born March 4, 2004. She spent 6 days in the hospitals special care nursery before being transported to the Johns Hopkins NICU in Baltimore, Md. She was in the NICU from March 10, 2004 to June 1, 2004. While in the NICU she underwent numerous testing. CAT-Scans, MRI's, X-rays, and an EMG. She also had her chromosomes sent out to be tested for genetic problems. When all of the tests came back normal, we were told "Sorry we don't have any more tests to run." She was extubated unsuccessfully 3 times before they decided she needed the trach. She got her trach on April 14, 2004. She was 5 weeks old. We were intially told she would bottle feed but three days later she went in for her G-tube surgery. She had her G-tube surgery May 28, 2004 as well as a Nissen.
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From Johns Hopkins, she went to Mount Washington Pediatric Hospital (also in Baltimore) We spent week after week waiting for the doctors to decide how much time she could spend off the ventilator. Finally, September 8, 2004, she was sent home. Her schedule consisted of being off the vent. for 8 hours a day. However, she needed 28% O2, while off the vent. We had her home for the first time in 6 months and it was wonderful. Unfortunately, 11 days after being home we had to take her to the hospital. She had developed tracheitis. This time she went to the Johns Hopkins PICU. She was there from September 18, 2004 until October 14, 2004. From there she went back to Mount Washington Pediatric Hospital. She stayed there until November 22, 2004. Luckily, since November we have had no more hospital visits. She is now on her T-Bird Lagacy ventilator continuously. The drs. said we would try to wean her off the vent. in the Spring. I'm looking forward to a sleep study we have in April. With the results, hopefully we can have her off the ventilator.
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As far as her diagnosis....it is undiagnosed low muscle tone. We were told that with time she should improve. Once her muscles get stronger she will thrive. So far, she has. She will be a year old in just a few days. She is sitting up on her own. Shakes her head no. Loves music and Baby Einstein videos. Claps her hands. She adores her big sister who is 3. Big sister pushes her to do more, and it works.
Amber: Mother of two: Nori, my sunshine and Kami, my miracle
