| STORY & UPDATES |
| THE STORY OF MY AMELIA After having our son, Alexander,who was our little Einstein; we decided that it was difficult enough to provide for one child. So one was it, or so we thought. One summer morning,Alexander,who was two and a half years old, came walking into our bedroom with a sad look on his face. I asked, "Why the sad face?" He said,"Mama, can I have a new baby to play with?" I was kind of shocked and asked him why he wanted a baby. He said, "Cause I don't have anyone to play with and 'cause everyone has a brother or sister except me." My Alexander was one smart little cookie but this was a large order. I told him he needed to play with cousins and neighbors and he would be fine, he didn't seem to like that answer. So, I told him he could go watch cartoons and that seemed to ease his sadness. The guilt grew and the idea prospered. So we got pregnant with our 2nd child. It seemed like a fairly normal pregnancy except I kept having bad feelings. I continually told my husband this pregnancy was different. It didn't feel the same as the other. I kept reassuring myself that I was just paranoid. The baby started moving around and as always that was exciting to us. But, I still couldn't shake the strange feeling of the movements. I told my husband it felt like twitching or fluttering instead of kicking. I even told the doctor and I got the standard quote, "Every pregnancy is different." So I said okay. The last month I was miserable ,as alot of us seem to get. About 3 weeks before my due date I kept getting false labor pains. Then, I started timing them and it didnt seem very false. The contractions were exactly five minutes apart and started at two A.M. everyday and ended at 2 pm everyday. We frequented the doctors office and I was hooked up to monitors alot. They kept saying,"Well, it seems you are in labor" then around two P.M. the contractions would stop and I would go home again. On the early morning of April 11, it was the same old thing; contractions started ,only this time they were closer together, about three minutes apart. I felt like they were stronger too. So we went straight to the hospital. I had been told by my doctor,"You don't want to have the baby in the driveway." Seems like a funny quote now, but it wasn't a chuckle at the time. So, I did the standard monitor thing and the doctor was on call down in the E.R. but was busy at the time. The nurses watched me and it seemed like the real deal. About five A.M. the contractions completely stopped. They unhooked me and said,"You can go home." I was so frustrated and they could tell. They suggested that I get dressed and if I wanted I could walk the halls for awhile. So my husband and I began walking. Just when I had decided I had enough and was ready to go home my doctor came up on the elevator. He asked how I was and I told him the boring,frustrating and tearful story. He said,"If you want to have the baby today, I will enduce your labor." I said,"Let's go." To a room I went. Around 11:30 they started putting medicine in my I.V. to induce my labor. It didn't take long before I was uncomfortable and they decided to go ahead and break my water. Then we really got to rollin'. At 5:23 P.M. Amelia was born. But something was not right. As soon as I pushed her head out; the doctor grabbed ahold of her and pulled her out of me. She didn't cry. I didn't hear a sound. They took her to the other part of the room and I kept saying,"What's wrong; is she okay?" No one gave me an answer. It felt like forever but it was only seconds and Amelia started crying. They all smiled and said,"Here is your baby girl." I held her and she looked perfect to me. All pink with ten fingers and toes. They said she needed a little more oxygen and they were going to take her to the nursery for awhile. No one ever said anything was wrong. They brought her to my room later and I tried to bottle feed her. She wouldn't suck on the bottle much. The nurses said,"Some babies are like that." Day two, I was ready to go home. All that was left was for the pediatrician to come and look her over in the nursery one more time. It was a happy moment but a short moment before blue skies turned to grey. The doctor burst into our room out of breath and said to us, "Your baby started seizing and we are not sure if she is going to make it or not." We felt as if we were caught up in some bad horror movie. Days three,four, and five passed. She had been given test after test including a spinal tap for meningitus, a head C.T., lots of blood work and then an M.R.I. They told us,"Amelia has had a brain bleed and we were lucky that the doctor was there when it occured." They also told us that she had previously had a brain bleed,inutero,before she was born. They did not know exactly what part of the pregnancy this had occured. So my fears and paranoid feelings weren't wrong after all. But there was no satisfaction in knowing that now. She was in an incubator on oxygen with tubes all over. She did not know how to suck,breathe,or swallow. Which is supposed to be a natural thing for us all. Whenever she would take the bottle she would suck until she turned blue. She would sound like she was drowning and depleting her oxygen. So they taught us how to monitor that. We also had to learn infant cpr. The pediatrician told us there was no way of telling how she would come out of this. But, probably, at worst, she would be in a vegetative state and would have to be institutionalized. I was thinking,"Oh dear Lord, what did I do to make my baby have to suffer so?" I was depressed and in shock. My husband,Steve, was my rock. He stayed in the nursery most of the time holding Amelia's hand and never giving up. Eleven days from her birth we finally got to take Amelia home. She was on phenebarbitol for seizures and would be for the first 6 months of her life. It seemed as if she slept the whole six months. Always quiet, never a fuss. I watched as my sister and my husband's sister have their babies that same year. Smiling and happy that their children were perfect. I kept wondering what was in store for Amelia. At six months she came off the phenebarb and started to wake up. A smile, a coo, we were so happy. At least inside our home just the four of us. Family would call or come by and say the usual stuff,"Well my baby was this old when he did that," and "She was that old when she did that..." and Amelia was not even close to her average baby goals. One year had almost gone by; I had had enough of worry. I demanded another M.R.I.. So we got one and was surprised when we got the results. Not only had Amelia had the two brain bleeds but she had some gray matter damage which is called PVL and the biggy was she didn't have all her brain. They told us that two-thirds of the anterior portion of the corpus callosum was missing. It had never formed. I thought,"Okay, what in the world is a corpus callosum?" In school, you hear cerebrum, cerebellum that sort of thing, but corpus callosum was a new one for both Steve and me. The corpus callosum is a band of fibers that serve as a bridge for information to travel from the right side of the brain to the left and vise versa. So Amelia's messages were getting lost or having to take a longer route for her to perceive what was going on with her body. We started a state funded program where twice a week a therapist would come in and work with her. At twelve months she was just beginning to crawl and it was military style at that. At two, she started walking and at three, we started her in public school in a special needs pre-school program. She was such a joy to be around. Energetic, she talked and really well I might add. But of course reaching goals at a snails pace. |
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