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Cameron's Story
"I knew my second pregnancy would be a difficult because I had preterm labor with my first son..."
And sure enough, I went into preterm labor with my second. I was put on strict bed rest at 25 weeks. I spent a lot of time on the internet researching problems associated with preterm babies born at 25 weeks. These problems included mental retardation, blindness, deafness, cerebral palsy. I wanted to be ready in case I had a preemie. As the weeks went by, my worries subsided. At 30 weeks, my baby was diagnosed with a slight enlarged ventricle but the high risk OB said it was nothing to worry about. At 35 weeks, I took myself off bed rest and I went into labor about 6 hours later. I did not want to get to the hospital too soon because I didn't want them to stop my labor. After all, my oldest was born at 34 wks at 6lbs and was very healthy. This guy will surely be even bigger and stronger since he had an extra week.
We left the house at 1:50am, got the hospital at 2:05, I was in triage at 2:10, the delivery room at 2:40 and Cameron was born at 3:00am. Needless to say, it was a whirlwind. My OB showed up just in time to deliver my baby, with no time to spare.
When I first saw Cameron, I knew I something was wrong. He was so small, (only 4 lbs), so purple and blotchy, and though his eyes were wide open, he did not make a sound. I panicked, but my OB reassured me. His Apgars were 8 and 9 and his blood gasses were normal. The blue splotches were just bruising that would go away. When my OB delivered my placenta, she asked that it be sent to the lab, but I thought nothing of that at the time.
Now I just wanted to sleep because I was so tired, but the NICU doctors kept paying us a visit every half hour. I was so tired and this was all a dream and it would all go away once I got some sleep. But they kept saying that Cameron was sick, very sick, blood problems, breathing problems, enlarged liver and spleen...just very sick. But I was so tired. I could not process any of it. Finally, at about 6am, they told us that we need to come see him..."now!"...in case he didn't make it through the morning. This couldn't be true, I kept telling myself. It will all go away.
In the NICU, it hit me. Cameron could barely breathe. He was crying a lot, but in very short spurts, because he could not get much air. His hands were clenched in fists and his knees were pulled up to his stomach. He was in so much misery. They were in the process of placing a central line in his belly button, he had an IV coming out of his head and I just started to cry. I looked at him, touched him and wanted to leave. I didn't want to get too attached to him. I couldn't imagine him living like this and I did not think he would make it. I went back to my room and cried myself to sleep. My husband went home and started making the phone calls to the family.
When I woke again at 9am, I asked the nurse how Cameron was doing. She said critical but stable. I went back to the NICU. Cameron had a lot more tubes in his little body and he was intebated, breathing with a machine, but he looked so comfortable and peaceful. At this point I knew, he was going to be OK, he is going to live. Though others told us his chances were 50/50, it was this moment that I realized he was going to make it. I called my husband with the good news.
Our doctors knew Cameron's problem was viral, but they couldn't pinpoint the virus. Finally, after about 2 days, my placenta lab test came back and it was infected with CMV. One NICU doctors told us that worst case scenario, he could have severe disabilities, but most likely, some hearing loss and only minor disabilities. Another NICU doctor told us, however, that he would not be about to walk, talk or learn. It was after this news that I felt at my lowest. I could not imagine having a severely handicapped child. It just could not happen to me. I went to the corner of the NICU and cried. I had never felt so helpless. I felt like my dreams and my life were shattered. At one point that day, I thought "I can't handle this, I can leave the hospital and never come back. Someone will adopt him, someone other than me could take better care of him!" Then I started thinking.."but what if they don't take good care of him, what if they are mean to him, what if they neglect him, what if they don't love him...oh my god, oh my god...GIVE ME MY BABY BACK!" From that point on, he was all mine!
Cameron remained in the hospital for five weeks. He received multiple blood and platelet transfusions and was on the breathing machine for about six days. While there, we tried to talk the doctors into administering gancyclovir to Cameron. They said it was too dangerous and that it would kill him. Cameron came home with us just in time for Christmas. He remained on oxygen at home for another two weeks until he went back to the PICU for his last blood transfusion which seemed to do the trick.
Cameron is a sweet affectionate child. He is so affectionate and sweet, I can't help but feel blessed for having him in my life. He has an old soul, a wise soul, that God entrusted us to. Having Cameron in my life has made me a more patient and loving person. It has made me a better mom to my older boy. It has taught me not to be afraid of others with disabilities and to embrace them as wonderful human beings. I used to look the "other way" when I saw disabled kids or adults. Now I make eye contact, smile and make conversation with them and their family. To some extent, it has been liberating. Some people tell me we are doing a wonderful job with Cameron. We try our best, but when we have friends and family validate it, it gives me more hope and confidence. However, deep down we wish we could do more.
In the first days, when were told Cameron would be severely disabled, my husband sat with me as I cried and reassured me that that does not have to be our child, that our child could turn out just fine and that with work, we could improve his outcome. I have had to learn to look at only today, one day at a time. When I look in the distant future, I get really scared. But then I reassure myself that I will be able to handle anything then, that I will learn as I go, just as I have done to this point. I will be able to handle it because it is my Cameron!
Oddly, I have never been angry about this. For me, it wasn't a why me? For me, I knew disabled kids were always going be in the world, so why not me? Now I feel almost special, I feel like God blessed me and picked me. I love my perfect "imperfect" family. I think back to a day when we had a school project with Cameron. One of the questions asked Cameron, "what do you want to be when you grow up?". I cried when I thought about this question. I couldn't ask Cameron because he doesn't talk. I felt so helpless. I didn't know what his dreams were. And then the answer came to me. So where it asked "What do you want to be when you grow up?" was written one word..."Happy"!
In addition to the hearing loss, at five years old, Cameron cannot walk, but can stand with support and crawl all over the place. He has no language, most probably due to his hearing loss, but he definitely has the ability to problem solve in his environment. He has just started to self feed over the past year and continues leaps and bounds in this area.
- Shared by his mother, Julie