Casey's story...

Yesterday was my daughters' Birthday. They turned twenty four, nine, and would have been nine. We did not do anything to celebrate it yet. We were saving that for tonight, since I had to work yesterday. Tonight we will grill burgers, eat cake and ice cream, open gifts. I will smile, and laugh, and we will play music and dance. Tonight I will watch a movie, or read a book. When the lights go out, and every one else is sleeping, I will cry. A friend told me last night that I should not cry for my lost angel. My friend said I should be happy that she is in heaven. I am not happy about that. I will never be happy about that. I am still angry with God. Angry that I can not celebrate this day wholeheartedly. I am thrilled that Alicia and Corey(Corrine) are growing up. But I am angry that I do not get to see Casey(Cassandra) blow out candles. I got to see Corey take her first steps, knowing that if Casey was here, they would have been taking them together. I got to put Corey on the bus for her first day of school. Alone. When she was little Corey would point into the mirror and say "Casey". She was five before she finally stopped associating her image with her sister. I have never understood the bond that exists between identical twins. But I know that Corey still feels Casey's loss profoundly. Casey was only two days old when she passed away. But never before or since has anyone or anything affected our lives so completely. I am a little fuzzy about all the details of the day the twins were born. I remember bits and pieces, kind of like a movie from a B director. I remember going in that morning for a scheduled C -section. The mood euphoric. There really is no other word I can think of to describe it. It had been a long and difficult pregnancy, and even though the girls were coming early, we knew everything was fine. I had been following Doctor's orders. I had been watching my blood sugar, getting plenty of fluids, and plenty of rest. I had been faithfully taking the medication to control my contractions which had started only three months into the pregnancy. I had been getting ultrasounds every two days, and non stress tests everyday as ordered. I had been getting weekly injections of a steroid that would help to speed the development of the babies' lungs because we all knew that premature birth was imminent. At about six in the morning the doctor preformed an amniocentesis. (For those of you who do not know, that is when they insert a needle roughly the size of New York into your stomach, and withdraw amniotic fluid.) The tests all came back great. The babies were ready. Their lungs mature. Everything was peachy. All my friends and family had taken off of work to be there. Even the hubby's ex-wife (she is a good friend of mine now ((long story)) ) was there to help celebrate the birth of our babies. Everything looked like sunshine and smelled like roses. I went into surgery smiling and laughing. I made jokes with the anesthesiologist and the nurses. There were dozens of people in that little surgical room. Each baby about to be born had to have a number of nurses available. I had two nurses, an anesthesiologist, my OBGYN, and his assistant. The girls had a pediatrician, and she had her assistant. The hubby was there, to hold my hand. I remember laughing as the doctor made the incision. I felt no pain, it was more like a light tickle. Everyone was smiling because I was laughing. I was so happy that I would finally be able to hold my babies. "Twin A born at..." I remember the doctor saying. Then he called her by name, "Cassandra." I had named the babies the day I found out we were having twins. Corey and Casey. The names would work whether they were boys or girls or one of each. When we learned the sex of the babies, the names became Corrine and Cassandra. But I will always think of them as my Corey and Casey no matter what the birth certificates say. After he said her name, the doctor's face became somber. He handed her off to a nurse, who took her to the pediatrician immediately. The pediatrician started working on her right away. She was standing behind my head over my right shoulder. I remember the mood changing so quickly. Nobody would say anything. But I could see it in their eyes. I demanded to know what was wrong with my baby. I remember trying to turn around to see what was going on, but I was paralyzed from the chest down from the spinal epidural. I remember the tears in my eyes. I remember the tears in my hubby's eyes. And in the doctor's and his assistant that had been with me through every step of my pregnancy. And then for me the lights went out. The hubby had instructed the anesthesiologist to knock me out, and so he did. When I woke up a few hours later, everyone was crying. Doctors I didn't know came in and used words I didn't understand to explain to me what was going on. I was groggy, and just wanted my babies. My OBGYN came in and sat down on the edge of my bed. He told me that things did not look good for my sweet Casey. When she was born she was not breathing. At first they did not know why. Everything had looked so good. The pediatrician worked on her and had called in a more experienced doctor to help. After a long time they finally were able to revive her. She had needed a blood transfusion. She had been born with only about a third of her normal blood volume. It was caused by something known as Acute Twin To Twin Transfusion Syndrome. But by the time they figured it out, and got enough blood in her to get her heart pumping again, the damage was done. She needed special care that they could not provide at the hospital we were in. She was to be life-flighted to University of Nebraska Medical Center. The more experienced pediatrician, a wonderful man by the name of Dennis Jones came in the room. He quickly asked me if I would like him to preform a Baptism of my baby girl before she was transferred to the Med Center. "Yes", was all I could get out. I was in shock. How could everything have gone so terribly wrong. He rushed back out of the room, and returned a few minutes later with a whole host of nurses and technicians followed by this tiny little baby in a huge incubator. She didn't look sick. Except for the oxygen tubes and the heart monitors, she looked perfect to me. They wheeled the incubator next to my bed and allowed me to touch her tiny hand for the briefest moment, and then they were gone taking her away from me. The hubby and most of the family followed her to the hospital, leaving me with Debra, the hubby's ex and my best friend. I felt so lost. So confused. Surely God would not let anything too terrible happen to this beautiful child. I have not spent my life in a convent, but I have always striven to be a good person. Surely this kind of hell was only for bad people. I sat there in disbelief. They brought Corey in to me and placed her in my arms. And God help me, when I looked into her perfect healthy little face, I did not want to be holding her. I wanted my Casey too, and Corey alone would never be enough. I asked my OBGYN, another wonderful man by the name of Norman Ferrer, when I would be going to University Hospital. He told me that it was not hospital policy to transfer healthy mothers and children to other hospitals. I let him know in no uncertain terms that this answer was unacceptable, and that I wished him to bring me the paperwork which would allow me to leave the hospital against medical advice. He reminded me that Corey was not going to be released from the hospital, and they would not allow me to sign her out, regardless of my personal choices. I then decided that I would leave Corey, who was very healthy, in the care of the fine doctors and nurses at Mercy Hospital, and come back to get her when I could. All the time I was thinking about how the powers that be had never come up with a contingency plan for just this kind of situation. Doc Ferrer asked me to give him a few minutes to see what he could do to help. As soon as he left the room I had Debra start packing my bags. I was going to be with Casey, and no power in Heaven or on Earth was going to stop it. Debra had just packed my last items when Doc F came in and told me he had arranged for an ambulance to come and pick Corey and myself up and transfer us to the Med Center. He had made arrangements with University for a room which was positioned closest to the NICU. The catch was that only a few hours after giving birth to almost sixteen pounds worth of babies, and a vertical Cesarean, I was going to have to get up of my own power, and walk to the ambulance, where I would then have to be able to get myself into the front seat. Because Corey was in an incubator, there was no room in the back for both myself and the medic that would be attending to her. I told him that would be no problem. I started getting out of bed, when he asked me where I was going. "Out for a smoke.", was my answer. Now I know this is not a thing most people would expect, but anyone who smokes will understand that during times of extreme stress, a cigarette is what we automatically turn to. The Doc told me that I was to sit my ass back down and smoke my cigarette right there in my room. "Just open the window." Four cigarettes later the medic finally showed up with the ambulance. He walked into my room pushing a wheelchair. I climbed in and we were off. About halfway to the exit, we were chased down by a nurse who explained that I had to return to my room because in all the chaos I had not been given my RhoGAM shot. I remember standing up in the middle of the hall, dropping my underwear, hiking up my gown, and bending over for the shot. The nurse seemed appalled by my behaviour. She refused to give the injection in the hallway. The medic took the needle, gave me the shot and told her to go away. When we got to the ambulance, the medic helped me into the front seat. I remember it hurt like hell trying to get in there, and he kept apologizing. The ride there seemed to take forever, and I honestly do not remember getting there. I was still in a bit of a drug daze. I went straight to the NICU to be with Casey. She was in an incubator that was tall, so I had to stand to see her. I remember that I was kissing her and stroking her, and talking to her. I could not tell you who else was there. For me, at that moment, she was the whole world. Finally, I recall, a nurse came in and told me I had to leave. She said I was pale and sweating and they had to check my vitals. She told me Corey would not take the sugar water they were trying to give her. She refused the formula, and she needed fed. They took me back to my room, and Corey started breastfeeding like a champ. I remember it was dark outside. I remember that people kept coming and going from my room. My sister had called my father in California, and he had a flight scheduled out the next night. My mother called, and told me she wanted to wait until a "happier" time to come and see us. I told her that her granddaughter was going to die. She still would not come. I remember a nurse came in to change my IV bag and empty my catheter bag. I assume she gave me something to make me sleep, because the lights went out again. I woke up the next morning hoping it had all been a nightmare. But when they brought in my breakfast, and then only brought in Corey to nurse, I knew better. There were beautiful flowers and balloons in my room. But only one bassinet. I nursed Corey until she fell asleep and called for the nurse to take her back to the nursery. I used a pillow to hold my stomach so that I could get out of bed, and I walked into the NICU. I knew things were not good. When I saw my baby she was on a ventilator. She had tubes in her nose, down her throat, and leads coming from her chest and head. She was swollen from the medicines they were using. The nurses could not look me in the eyes. The doctors spoke in whispers to each other. Some other parent had left a crib medallion of Saint Jude on her incubator. Someone else taped up a saying by Mother Teresa. Even with all this my mind refused to accept what my heart already knew. I was mentally making plans for taking my girls home. I was trying to convince myself that they could fix whatever was wrong. Medicine is so advanced these days, certainly they can fix this tiny baby who looks so perfect. But they called a family meeting with us that morning. They told me things I can not now remember. But I remember that the gist of it was that my baby was lost to me. They said there was no brain activity. They had called in a specialist, one of the best in the world to consult, and the consensus was that there was no hope that she would ever regain any kind of conscious thoughts. I remember questioning their opinions. I wanted third and fourth opinions. They told us that she would never breathe on her own. That she would never again open her beautiful blue eyes. That she would never feel my caress. She would never taste my kisses. They talked to us about removing her vent, and letting her go. I could not wrap my mind around it. Then the room got fuzzy, and I woke up in bed. I remember going back into the NICU. They had put a chair next to her for me. Debra stayed with her round the clock, so that she would never be alone, not for one moment. The hubby and I sat holding her little perfect hands, and we came to the decision that the kindest thing we could do for our sweet baby was to let her go. That was the hardest thing I have ever had to do. The hardest decision I have ever made. It is not something I would wish on my worst enemy. I remember going back to my room and crying. I wanted to hold her. But because of all the equipment I had not been able to yet. A nurse came in from the nursery and bitched at me about being gone from my room so much. She said Corey was hungry and what kind of mother was I to be gone so much? Luckily Doc Ferrer had come by to see me at that time, he was able to explain. She had known nothing about Casey, all she knew was that I had one baby. The baby photographer came into my room later that day with a form for me to fill out to get pictures done of Corey. I signed the forms and told him I wanted the pictures done with both girls together. He said that would not be a problem. He came back a few minutes later saying he would not photograph Casey with all the machines attached to her, but he had taken pictures of Corey alone. I told him to fuck off and get out of my room. My sister brought my son who was five at the time to see his sisters. He did not understand. He wanted to hurry and bring them both home. He kissed Casey on her belly which was one of the few available spots on her body that was not attached to something. We dressed Casey and Corey in their "coming home" outfits, and took pictures of them together. I sang her the song that I had been singing to them since I first knew they were coming. "Mommy loves me this I know for my mommy tells me so, I love her and she loves me, I'm the worlds cutest baby. Yes mommy loves me, yes mommy loves me, yes mommy loves me, my mommy tells me so". The hubby read her a bedtime story. The only one she would ever get. I spoke to her and breathed in her smell, so that I would never forget it. I stroked her cheeks, and kissed her feet. I counted her fingers and her toes. Over and over and over. I forgot to eat. I forgot to feed Corey. Sometimes, I forgot to breathe. I would stand by her side until I felt I was going to pass out, and someone would come and make me leave. I am pretty sure I was secretly being drugged by my doctors. I would lose track of time. At some time that night I went to sleep holding Corey in my arms. I remember a nurse coming to take her from me, and I got very angry. She left her with me that night. I woke up the next morning dreading the day. We were waiting for the arrival of my father before taking her off the vent. We wanted him to get to see her first. When I went to the NICU, they had moved her to a private room. It was filled with family and friends. There were elders from my church there to give her a blessing. Nurses came in and out silently, checking monitors, and cleaning tubes. we all skirted around the issue of what was coming. My head still would not accept that this was actually happening. I kept trying to convince myself that something would change. That the doctors would say there had been a mistake, and she would be alright. We somehow ended up back in my room. Probably I had to feed Corey. My sister was on her way back from the airport with my father. The nurse came into my room. Her face was blank to me. She told us that if we wanted to hold her and have her off the vent before she passed we needed to do it soon. Her organs were starting to shut down despite all their best efforts. Her little body could not hold out much longer. My father arrived, and we were all back in that tiny room with my angel. He got to kiss her once. They let my husband hold her for the first and last time. I never want to see that kind of despair in his face again. I would gladly give my life to have never seen that kind of anguish in him, ever. They wrapped her in her blanket, took her tubes out, and placed her in my arms. For a short time, I held both my girls, together. Then they took Corey from me, and I held my lil Casey as her tiny heart stopped beating. I was kissing her, and telling her it was okay to go. I told her that I would be okay. I promised her that I would see her again someday, and we would chase butterflies together. I remember the warmth of her. I remember the weight of her in my arms. I remember the smell of her hair, and the taste of her skin on my lips. Oh God, I want my baby. I miss knowing her. I see Corey growing into a lovely young lady, and I feel this huge empty spot in the pit of my stomach. I see people in the store with twins, and I go home and cry. I had such hope for my girls. I wanted to see them grow up, and get married, and give me grand babies to love. I guess I will have to wait awhile longer to see my Casey again. But knowing that the day will come that I get to be with her again doesn't make today any easier. I am bawling now, and can barely see the keyboard. I need to go to bed and cry the rest of these tears. But I just needed to tell someone, anyone about how special my Casey was. I wanted someone else to know her name. And to remember her.