Alistair
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Alistair was born 12/20/99 at 28 weeks and 1 lb 3 oz. I had a very difficult pregnancy with bleeding all the time, pre-eclampsia, placental abruptions, strict bedrest... He was taken by elective c-section because of his severe IUGR. The doctor said it was one of the worst looking placenta/umbilical cords she had ever seen and she was surprised he had made it this far. He's a strong-willed little sweet pea.
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He was intubated for almost 4 months. After numerous failed attempts to get off the vent, he was trached on 4/12/00. I was very apprehensive about the trach and hated the idea of anyone cutting my baby. But after a lot of research, I realized it was probably the best thing for him. After the trach they did a thorough bronchoscope and his primary problem was identified as swollen vocal cords. They said he had a little tracheomalacia too, but they had seen other preemies successfully extubated with worse tracheomalacia. The surgeon thought he would have the trach in for 9-12 months. He came off the vent and all oxygen shortly after receiving the trach. He is feeding from a bottle and it is wonderful to be able to pick him up and carry him around. He is still in the hospital while we wait for home nurses to be arranged. There is a real shortage in this area (San Francisco Bay Area). He also has inguinal hernias that need to be fixed. He had
BPD, but since he is not requiring oxygen now, seems to be healing nicely. He had ROP stage 2, but it regressed.
Reading, research and education have really helped me get through this whole ordeal and while this was definitely not the pregnancy/baby I envisioned, I feel that I have really been blessed.
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Update April 2003 - Alistair was decannulated on 1/28/03 thanks to the magic of Dr. Cotton. He had an LTP in August and a stent for over a month. He was slowly weaned from the trach with the help of a Passy-Muir valve and a cap. He immediately got a cold after the removal of the trach but was able to weather it ok. He does snore a little at night but then again so does my trachless husband! We are pregnant with our second child, a boy, due August 31. This pregnancy is nothing like the first- not one drop of blood.
Alistair is learning how to talk. He still has a severe oral aversion and will only eat (unwillingly for the most part) pureed foods. Otherwise, he is a beautiful, active 3 year old. His stoma looks like an indent in his neck now, but it is closed. Anyone is free to write with any questions. This list helped me a lot.
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- Feel free to e-mail, Leesa
