What is there to say about this experience my husband and I have been through? There is everything and sometimes there is nothing. Words are inadequate to describe the richness of our experience. We had two sweet little boys on Earth but for such a short time. We were cheated because we lost them so soon but yet we were given a precious gift of having met them. People have asked me if I would have gone through all I went through, if I had known how things would turn out. My answer is yes, in an instant, as long as I knew they would not be in pain.
In May of 1999, Ken and I were on vacation in Gettysburg, Pennsylvania, one of our favorite historical areas. I was not feeling well so we came back early. I had severe abdominal cramping. I was told to take a home pregnancy test, which much to my surprise, turned out positive. I made an appointment to see my family physician, who sent me for an ultrasound.
The first ultrasound showed a misshapen sac with nothing in it. This was diagnosed as a "false pregnancy." I was told my body would expel the sac on its own; this is why I was cramping and, by this time, spotting. However, nothing happened. We were told to wait, let things take their course, and come back for another ultrasound at an obstetrician's office, that maybe it was too soon to see anything in the sac. We were puzzled. Was this a false pregnancy or was I indeed pregnant?
At the obstetrician's office, another ultrasound was done. The reason the sac was misshapen was because I was indeed pregnant with twins. Also, at this appointment, the technician was able to get the heartbeats for us. I was approximately 10 weeks pregnant and actually heard their heartbeats, although the babies themselves looked like little blips on the ultrasound monitor.
Ken and I looked at each other and there was a collective gasp. This was my first pregnancy at age 34 and it was with twins! I remember lying on the table when the technician was doing the ultrasound. I heard their heartbeats and was crying silent tears. My babies. I could not believe it.
We went home, told our families the news and went home, thinking over our future roles as mom and dad. Could we do it? Would we be good enough? Yes, this would work out fine. There were no doubts.
At our next ultrasound, we discovered there was a problem. Steven (Twin A) had a tumor in his chest. I remember being told, "We are so sorry" and I felt like screaming, "Stop saying this to us! He is not dead!" We were given the name and number of the high risk obstetrical team in our area, as this was something that my regular doctor did not deal with. This situation was simply out of his realm of experience.
At this point, things quickly spiraled out of control. We learned that Steven also had hydrops in addition to the tumor. There was a large collection of fluid under his skin, making him very bloated. Timothy (Twin B) seemed to be doing okay, however there was a size discrepancy. Steven was quite a bit larger than Timothy. There may have also been twin transfusion syndrome.
On 09/10/99, the day after my dad's birthday, I went for my regularly scheduled appointment with my high risk specialist. Thankfully, Ken accompanied me to all of my appointments. I told my doctor I felt a tightening sensation. He examined me. I was in labor. My contractions were 3 minutes apart and I was dilated to 1 ½. I remember looking at Ken and saying, "I don't think they're gonna let me go home," as they put me in the wheelchair. I was admitted to the hospital, where I lived for the next 5 weeks, until my boys were born.
Everything happened so quickly. I was brought to the intensive care unit of the obstetrics ward. A nurse was hooking me up to an IV. I remember asking my doctor, "should I take my contacts out?" I had no clue that I would be staying there for such a long time. I thought, "Okay, there is a problem. They will fix it and I will be going home." I took my contacts out. Someone was telling me about magnesium. There was a lot of activity around us. Magnesium sulfate was instilled through my IV and it coursed through my veins. The first thing I did was throw up salt water (mag sulfate is epsom salts). Then, I got double vision. I began to swell up and pant. I felt like I was on fire. The nurses put a fan in front of my bed and gave me a wet washcloth for my forehead.
Our family members were called. They came in and were in disbelief that this was all happening. My dad could not understand. He has sisters who are twins. There were no problems with his sisters. They came into the world just fine. Why couldn't his grandsons be okay?
The magnesium dosage was bumped up. Every time the doctors tried to wean me, I would contract back up again. I knew they would not let me go home unless they could stabilize me. They talked about letting me go home on terbutaline if they could get me stabilized, but this never happened. I learned that I was on a very high magnesium dosage. All the doctors seemed very impressed that I could withstand such a high dose for such a long time. Meanwhile, I became the vampire queen. My curtains were kept closed because the sunshine through the window was painful. It actually burned. The lights were kept low, as well.
The following week, I underwent a cerclage. I wanted the anesthesiologist to put me under a general anesthetic instead of the epidural. I was terrified that something would go wrong, the babies would fall out, and I would be awake to know about it, yet paralyzed due to the epidural. My reasoning was this: Put me under. If they die, I will have to deal with it later. I cannot deal with it right away. I cannot deal with it if I cannot move and am awake. The doctors did not want this. They said "Pregnant women are hard to intubate. There is more of a risk involved if we put you under general. If something goes wrong, we may lose you." I thought, well, that's okay with me, if something goes wrong, all three of us will go together. I cried about it. Our parents got upset and scared. They wanted me to go with an epidural. Ken did, too. I ended up going with the epidural. I sternly told my doctor, "If anything goes wrong, I want you to stone me out of my head. I cannot know right away that the babies are gone." He said "Okay."
The cerclage went just fine. At that point, I felt invincible. I had my safety net. Everything would be fine. I could make the problems with Steven diminish by concentrating on them, the power of positive thinking, all that stuff. I prayed to God to help them, to give me strength and above all, to save my babies. Please, let them be okay. I had no doubt that they would be okay. If I had ever had doubts, there was no way I could have endured the magnesium, the surgery, the weeks in the hospital. As a mother, I would not, could not, let my babies die.
The weeks went by. I had ultrasounds every 3 days now. The fluid levels were pretty much staying steady. Poor little Steven was pretty bloated. His tummy looked so big. But, after all, he would be just fine, I thought. I was in such denial. The doctors told us the chances of his survival were slim, but I would not accept this. Ken was much more realistic. He hadn't given up but he knew things looked bad. The technician gave us copies of the ultrasound pictures, which I kept in my bedside table in the hospital. Our most precious ultrasound is a beautiful moment in time when Steven and Timothy were actually sitting across from each other, looking right at each other. I will always treasure that photo.
The seasons changed. I got pretty depressed. I started to worry once I realized I would not be leaving the hospital until I delivered. I realized if someone in our families had an accident or passed away, I could not go to the hospital or funeral. I had to stay at MY hospital. I knew I had to stay right where I was though. I had the big job. I was the mom.
My husband was so good. He stayed with me every night at the hospital. I do not know how he did it. He would get up in the morning, go home, feed the pets, shower and get ready for work. After work, he would stop by the house and then come to the hospital. His grandparents were a great help, also. They took care of our pets during the day and did the laundry. We had a great support system. My husband later said to me that he did all he could for me and for Steven and Timothy. I had to take all the physical and really he could do so little. But he did what he could. It definitely helped me, his being there. I believe the boys knew Dad was there, too.
We celebrated our 11th anniversary in the hospital. My parents brought us a cake, which we shared with the nurses. That was to be our only anniversary spent as a family of four. That anniversary will remain special to us.
My hands were really hurting from the IV, so it was decided that I would undergo placement of a PICC line, which is a central line inserted into the arm up into the chest. It kind of made me feel like some type of electronic device. The first time I really looked at it, without it being covered with a bandage, I thought I was going to pass out. I just saw this cord going into my arm. The PICC line enabled me to receive injections through it. This way, I would not have to constantly get stuck with needles.
The magnesium was beginning to lose its effectiveness. I began receiving injections of Phenergan and Nubain through the PICC line. This made me hallucinate. I would lie there and talk to an imaginary nurse. Ken asked me who I was talking to. I could clearly see her. She was blonde, dressed in a white uniform, standing at my right. He told me there was no one there.
I then ballooned up to almost 200 lb, another effect of the magnesium. I had 3+ pitting edema, which means you could stick your finger in my leg and the indentation would stay. I had trouble breathing and was put on oxygen.
One evening, I began to contract. This was very unusual for me. I always contracted at 5:00 a.m. It was 5:00 p.m. on 10/14/99. I was 26 weeks, 3 days along in my pregnancy. The contractions felt different. I knew this was it, without a doubt.
Ken was on his way from work. I paged him. I told him something was wrong. I had my doctor paged. My stitches from the cerclage were pulling loose. This was the point of no return. There was nothing else to be done. My body had had it. Ken arrived. The doctor counseled us again. At that time, he said to give the boys the best chance, we should go with a C-section. We agreed. Let's get them out fast so we can help them.
Ken was in the delivery room with me. I was given an epidural. Steven was taken out. He did not make a sound. Timothy was taken out. I heard a baby cry. I realized, "That's my baby's cry." Ken and I looked at each other with tears in our eyes. I wanted to see them. Instead, they were sped away from us.
Suddenly, I was aware of a sensation in my belly. I could feel the doctors tugging on my insides! I looked at Ken. I remember saying, "Ow." Ken said, "You can feel this???" Everything stopped. Everybody looked at me. I said yes. Ken was taken from the room. I had a mask put over my face. I was put under general anesthetic.
My family was worried. I was in the operating room for 3 ½ hours. I was on so much mag for so long, that when it came time for my uterus to clamp down, it couldn't. The doctors later told me they prayed over my uterus and waited. I came within literally 2 minutes of a hysterectomy. Finally, they saw movement. I was going to be okay.
I woke up in my room in the ICU. A doctor came in and said Steven was having trouble ventilating. He was dying. I said, "Bring him to me." A nurse put him in my arms. He moved around a little bit, opened his mouth in what looked like a yawn, and then simply stopped moving. I asked that Ken hold him, since I had been able to feel him all those months and Ken had not. The doctor pronounced him dead as Ken was holding him.
It took a little while for the realization to sink in, and then the anger. I was angry at God for allowing this to happen. Why us? We were good people! I began to fall apart. Ken told me I had to stay strong. He said , "Don't forget, you have another one here."
Timothy was in the NICU at the children's hospital. I then saw him for the first time, I think the day after he was born. Everything was such a blur. We really thought he would be okay. We lost Steven but of course, we would be able to keep Timothy. I prayed to God. I prayed to Steven, please help your brother stay.
Steven's funeral arrangements were made. I stood by his casket and asked him to help Timothy. I almost heard an answer, "But I need him more."
We thought about music for the funeral. I wanted John Lennon's "Beautiful Boy" but decided otherwise. I thought I would really fall to pieces upon hearing the song.
I was released from the hospital. It was such a strange feeling. One son was dead. The other was in the hospital. I had lost pieces of myself.
When we pulled up to our driveway, I cried. I had not seen my house for so long. So much had happened since I left that day for what was just to be a doctor appointment. I walked through the door and saw my pets for the first time in 5 weeks. They looked absolutely silly, like alien creatures. I had not seen fur in 5 weeks! The concept of an animal was amazing. I laughed at them.
We got a call in the middle of night from the NICU nurses. Timothy was having problems. We came in. That was to be Steven's funeral day. Ken's mom called the funeral home and they held his funeral because we didn't know what was going on with Timothy. I cried by Timothy's little bed, "I cannot do this twice." We waited for the doctor to come in . He discussed the situation. Timothy had systematic failure. He was dying. He was resuscitated once while we were there. He had gone through so much. So many blood transfusions. He was so little that every time they took blood, they had to give him a transfusion. When his heart rate dropped and he had to be resuscitated, we decided, enough is enough. He has gone through too much. He wants to go to his brother. He cannot endure any more. He was receiving 100% oxygen, yet he was turning blue. We had him disconnected from life support.
Timothy was brought to us so we could hold him. I kissed him. I was so drugged up on the morphine after I had the babies, that it had not occurred to me to kiss Steven. I wish I had. I believe they know I loved them both, though. I hope they do.
The funeral became a double funeral. I felt some sense of peace with that. They came in together and left together. They are buried in the cemetary next to our home, so we can watch over each other.
After our sons' death, life became a constant struggle. I had felt so lucky up to that point. I remember before my pregnancy, I was downstairs in my music room, sitting at my grand piano, sort of surveying my kingdom. I thought, you know, we have it pretty good. Look at all we have. And we have each other. I never knew we could lose so much. I learned that the material things just do not matter. I would gladly give up my piano if my boys could come back and be okay, but of course, that cannot happen.
I got angry. I demanded to know why this had to happen. I went through counseling with my husband. It helped to talk about it but I learned that someone can have all the degrees in the world and really not be qualified to help you. Unless you have been through this experience of losing your children, you really do not have an inkling of what it is about. People say "oh, I'm sorry" and I'm sure they are, but to really "get it" you have to be one of us. I heard a lot about God's will. However, I refuse to believe this was God's will. I think sometimes, things just happen. I believe in a higher power but I think sometimes things just happen.
I met some ladies through Neo Fight, who have been a tremendous help to me. I also became aware of CLIMB, the Center for Loss in Multiple Birth, and have a friend I talk to in that group. I have tried to take whatever positive I can from this loss. I feel more now. I appreciate life more now. I don't get upset about the little things. I have also been in the position to talk to someone who is now going through what I went through in 10/99. I was able to tell her of my experience and let her know that she is not alone. She will come through this. It is possible to come through this. I hope I have helped her.
I have also become more in touch with the spiritual side of life. I have never been a religious person really, but would describe myself as spiritual. I had a dream soon after my babies died in which I was flying with them. I had the sense that they were okay. They were out playing with Mom for a while and then I awoke. I was not upset. This was a good dream.
I also had a dream in which my Irish grandmother, who died before I was born, was talking to me. She told me she was watching over my boys now. She also mentioned her 2 dogs, which I did not know of previously. She said something which really seemed odd, "I'm taking care of the boys now. And, oh, don't forget about the dogs!" I thought, "HUH??" Then, I woke up. I talked to my parents about the dogs, who confirmed she had 2 favorite dogs, who were with her at separate times in her life. To me, this was proof. She was telling me, "This is not a dream. Here is your proof. Ask about the dogs." Little happenings like this help me get through the day.
One day after work, I was driving home and began thinking about my boys, wondering what they would be doing now, had they survived. I started to cry. I looked up ahead. In front of me was a white truck with of all things, the Cowardly Lion from the Wizard of Oz painted on the back. The caption next to the picture said, "COURAGE". I said, "Okay, I will try."
Last but not least, two days after the funeral, a white cat with markings on her sides resembling wings, jumped in our window. We kept her after going door to door, looking for an owner and finding none. I believe Steven and Timothy sent her. We named her Angelique.
I never would have imagined that Ken and I would bury our children. Babies are not supposed to die. However, we both feel blessed by having known our little boys, even though they were here physically such a short time. Sometimes I think my heart will break in two but I keep going on for them. I will make my boys proud of me. It is a comfort to me to know that someday, we will be together again as a family. And when I am asked the question, "Do you have children?" I tell them, "yes, I do. I have twin boys in Heaven.