Trevor came home New Year's Eve (1997/1998) as he was finally six pounds and eating from a bottle. He had come a long way in the four months he spent in the NICU. Trevor was home for just over an hour when during a bottle feed he turned blue and stopped breathing. I started CPR (which I learned just that day -- LEARN IT!!!) and called 911. By the time help arrived, Trevor was pink and breating just fine. We took no chances and drove him back to NICU where he was re-admitted. They did a barium swallow on him to determine if he had blockage in the throat, but none was found. It was finally learned that Trevor needed to have oxygen while he was eating as he did not know how to properly suck, swallow, and breath. On January 6th he went home again, much more prepared, and where he finally stayed. This time I had a nurse waiting for us at the house and oxygen to make sure he was definately okay. Another thing I learned that is very important for other micro-preemie parents to know.........when Trevor went home that first attempt, it was his first time in a car seat sitting upright. For the previous four months, all Trevor had done was lie in a bed, never sitting upright. I feel that the initial car ride home played a big part in his not breathing well as he didn't know how to breath in that position. I talked with the doctors, and the 5 days Trevor re-spent in the NICU included 1 to 2 hours each day of sitting up, preparing him for the next ride home. I think it helped - because he made it home the next time with no problems. After six months of being home and being kept quarantined, he was removed from his Apnea Monitor and the oxygen. He was finally "cordless". His second herniated scrotum corrected itself so he needed no more surgeries for that. He did have one additional eye surgery to correct his eye's from crossing, which had wonderful results. He now sees perfect (with the exception of permanent loss of peripheral vision). Unfortunately, Trevor was unknowingly, to us all, suffering this past year, but we eventually found out why are are now in the process of correcting that. He developed aspirtation and reflux, which started filling his lungs with fluid when he bottle fed. He was always sick and in the hospital every month thinking he had pneumonia. Now that we have determined this aspiration problem, he no longer can accept "anything" via mouth. He currently eats with a machine feeding him high calorie formula through a tube running down his nose into his belly. He will soon be getting a permanent tube in his tummy to eat through which will eliminate the tube through the nose. Though it sounds bad, this has made a tremendous difference in him!! He started gaining weight "FAST" and plumping out. He also became much healthier and happier (though he is extremely happy all the time anyway). He is now 18 months old, weighs in at 19.5 pounds and wears 2 year old size clothes! He still can not sit up, crawl, walk and has problems holding things in his left hand. He will most likely be diagnosed with Cerebral Palsy this year and he is undergoing some tests to determine this. He caught RSV in January, which put him into the hospital for two weeks, after he passed out while at his sitters. When he went into the hospital, he was only 16 pounds and had not grown or gained anything in the previous four to five months. Because we found out about the aspiration (filling his lungs with fluid) and stared him eating through a tube, he started growing, as he should be. Trevor is a very, very happy little boy considering what he endures every day: being fed through a tube, getting breathing treatments three to six times a day or more, being developmentally delayed, depending on "everyone" for everything at 1 1/2 years age, meeting with therapists and doctors every week. But through all that he LOVES to laugh and play with you and will always make anyone laugh! He is the joy of my life and he gives me hope every day. I ask those to please not feel bad for him or me. We always look at the bright side. He is here to enjoy and has a loving guardian angel brother that will ALWAYS be with him and watch over him. Trevor has such minor problems to so many other in the world that I actually feel more for those than ourselves. I am blessed with a good job that allows me the time I need and the understanding when situations get bad. We are blessed with each other and wonderful caring doctors and agencies that help us seek and receive the help we need. We have fun and love each other. Our lives are fulfilled and we are stronger because of what we have endured. Therfore, we are always willing to help others in the same situation as much as we can in support, knowledge and just plain being there. Everything happens for a reason, and I feel we endure the pain because we are blessed with the strength and understanding to endure it and to learn and to teach from it. We have a very long road ahead of us and just take each day as it comes, always unexpected. I want to thank all of you so much for listening and caring enough to be a part of our lives by reading our web page. I always feel better when I am able to explain our situation to people and let them know how well we are doing through it all. Please keep checking back for future updates. I promise to try and keep up!
