Dear Mr. Sparks,
This is the story of our precious daughter, Taylor Saige Cooper. Taylor came to us, as well as left us, on February 6, 1999. In only a few weeks it will be one year ago already. At times it's as if it were only yesterday, and at times it's as though it was a lifetime ago. I would like to honor her by sharing her story with you.
My name is Chrissie Cooper. My husband, Skip, and I will be married 10 years in March. We have twin daughters, Tara and Rheannon, who are eight years old. We also have two sons, Ian and Christian who are 11 months old. They are Taylor's little womb mates. Taylor was part of a very unique pregnancy. Taylor was one of a sextuplet pregnancy. Ian and Christian are the only survivors of the pregnancy.
My first pregnancy was achieved with the help of Clomid. It was a very difficult pregnancy as at 24 weeks I was diagnosed with an incompetent cervix. I spent 6½ weeks hospitalized hanging head down and feet up. Tara and Rheannon entered the world 10 weeks early very tiny but healthy. When the girls were four, we decided to try again to conceive. Clomid was again prescribed. I developed a serious complication from it, and could no longer use it. Injectable drugs were then suggested. These drugs made me nervous. I did not want to get pregnant with high order multiples, and so we declined for the time. After 2 ½ years of trying without success, we finally decided to try the injectable drugs. We researched them thoroughly and spoke at great lengths to our fertility specialist about the drugs. We had also decided to proceed on any cycle that more than three follicles were present. Three follicles would optimize our chances to conceive just one baby, and there was a less than 5% chance that all three follicles would be fertilized- Even if they did, at best we would have triplets. In July of 1998, during my second cycle of the drugs, I had to be hospitalized due to severe ovarian hyper stimulation. This is a serious complication of the ovulation inducing drugs. I had 30 pounds of fluid accumulated in my abdominal cavity, my kidneys were closing down ... I was gravely ill. It was during this time, that we found out that I was pregnant. We could not believe it! Skip and I were both immediately scared though. I had been on so many drugs for the hyper stimulation. Would the baby be harmed by any of the medicine we asked. We were told not to worry. They assured us that all the drugs used to treat me were safe for use in pregnancy.
After a two weeks hospital stay, I was sent home on bed rest. I was still very ill. The fertility doctor wanted to do an ultrasound during the sixth week of my pregnancy to confirm the pregnancy and to make sure it is in the uterus and not the tubes. In the back of my mind I was suspecting twins or triplets because my HCG levels were high. I was however not prepared for what they told me that morning. They measured six maybe seven sacs in my uterus. It was too soon for heartbeats, so exactly how many were viable would not be known for a few more weeks. I can only cry. My mother is in the waiting room with my daughters and Skip is at work. My mind is spinning. The chances of carrying this many babies to viability are quite slim. I also have to have my abdominal cavity tapped again because it is filling with fluid and I cannot breathe.
I call Skip at work and give him the news over the phone. He responded with a calm that I'm sure he was not feeling at the time, but he assured me that we were just going to trust the Lord for whatever was ahead of us.
Two weeks pass, and again a scan is done to see for sure how many babies there are. There are six babies. One baby's heartbeat is weak and they think probably will not survive long. Fetal reduction is given as an option. We had told our Dr. that this was just not an option. We had discussed our feelings regarding this matter with him even before going on the drugs. It was just NOT something that was right for us.
One week later another scan reveals that one of our babies has indeed died. We are now being turned over to a perinatologist. They will be in charge of my entire pregnancy. Our first meeting with the doctor was overwhelming to say the least. The risks for the five babies as well as for me were great. I'm still on bedrest at home and that would have to continue. I will have to be hospitalized around week twenty for the duration of the pregnancy. There is a 50 to 60% chance of losing all the babies before the 18th week. They warn that the risk of congenital abnormalities is greater because of the number of babies we are carrying. Of course we are at great risk for a very premature delivery and with that comes the risk of severe complications to the babies. I was at risk for life threatening complications during the pregnancy and delivery. Still, fetal reduction was not an option for us. We were just going to let this in God's hands. It was all up to Him.
I am scanned weekly. Week nine reveals that another one of our babies has died. The reason unknown. We are saddened but not allowed to grieve. Doctors feel this gives the other babies a better chance now that they don't have as many to share space and nutrients with. For us though it was horrible... these were our children and we will never get to meet these two little babies in this lifetime. We wanted to grieve, but instead had to keep focused for the sake of the surviving babies growing inside of me.
Week 13 a cerclage is placed in my cervix. All four babies seem to be doing well. Then, one week later, I began bleeding very heavily. I am again hospitalized and the doctors cannot find the source of the bleeding at first. All four babies are doing good, but the bleeding is not a good sign and it is causing my uterus to contract. The doctors tell me that they feel there is no hope for the pregnancy. They also warn that my life is already being threatened because my blood counts are dangerously low and if I continue to bleed then my life is at risk. To give us some kind of a chance, they recommend reducing the pregnancy to one baby. We again decline. My mental state is so frail right now. I am afraid for these precious babies. God knows my pain and my fears and uncertainties regarding this pregnancy. He also loves each of these little lives. We need to find rest and comfort in that. It is around this time that we find out they we are carrying two boys and two girls. Baby A is a boy his name is Ian, Baby B is our other son, Christian, Baby C a girl, Taylor, and baby D our other daughter her name is Saige. Ian, Christian, and Saige are all good size, but Taylor is much smaller than the other three. The doctors warn that we will probably lose her before too long. They have the contractions under control, I'm given a blood transfusion and sent home on a contraction monitor and strict bed rest.
In early November we were in for our weekly scan and I cannot shake the feeling that something is wrong. I voice my fears to Skip, and he reminds me to stay calm. We soon find out that my fears are correct. The doctor says that something is wrong and we need to talk. They take Tara and Rheannon in to another room. The Dr. tells us that Baby C, Taylor, has a Congenital Diaphragmatic Hernia. She proceeds to give us all the horrible facts and statistics. She explains that this can go along with other congenital abnormalities, but any further testing to see if this was the case would be impossible because it would risk the other babies. It's amazing how quickly your world can turn upside down. My biggest fears with this pregnancy to this point had been miscarrying or premature delivery. Birth defects were the furthest thing from my mind. The CDH was bad enough, but Taylor was small and the risk for premature birth made her odds much worse than in she were the only baby we were carrying. Again, fetal reduction is given as an option. Absolutely not ... we have to give her every chance. This defect will cause her no problems as long as she's inside of me. God created her and loves her as do we. We must give her every chance. It was at this point that I found out about CHERUBS. A friend of mine got your info from the internet, and quite honestly as I began to read the stories I became even more terrified than before. I had to put the newsletter away. It was just too much at that point in my pregnancy
December 1, 1998 I am admitted to the hospital for the duration of this pregnancy. I am 20 weeks along now. Quads typically deliver around 27-30 weeks gestation. On December 10 my first ultrasound since coming to the hospital is to be done. I was so tense because in the past they had been looking at baby A's (Ian) heart. We're told that it's not until around week 22 that they are able to get good views of the heart ... that's today, 12/10/98. Ian is not in a good position today so they cannot tell. They do though confirm my suspicions that Ian may have a congenital heart defect called transposition of the great vessels. I cannot believe this. How could two of our children have such different and devastating birth defects? No time to think of it right then.
They had to move on to look at the other babies. Baby B (Christian) looks great his heart appears normal. Baby C (Taylor) her heart is small and pushed to the right due to the CDH but appears normal in its structure. Baby D (Saige) as they begin to scan her I ask "What are we looking at here ... something does not look right to me I say. "The room was full. Myself and Skip, our daughters, 3 doctors and two technicians and yet the silence in the room was deafening. "I'm sorry Chrissie this baby has died" the doctor quietly tells us. How can that be? I ask. She had looked great two weeks ago. Of the four remaining babies they had expected this for Taylor, but it came as a total shock for Saige. It seemed as though things were spinning hopelessly out of control. My emotional state is so frail. I thank God for my husband who never gave up hope and always reminded me of the fact that God was in control and allowing all of this for a reason. Skip was an amazing source of strength for myself and our daughters who were terribly scared and confused through all of this. We also had many people and churches upholding us through their prayers, and yet, quite honestly, most days I was very restless at heart. I wanted so desperately to help all my children, those I was carrying as well as Tara and Rheannon. Yet, all I could do was to lay in a hospital bed helpless.
Things just went from bad to worse. Two days after learning of Saige's death I began bleeding again. Saige's body was collapsing due to the other babies pushing on her and this was causing the bleeding. The bleeding was causing my uterus to contract and at only 22 weeks gestation we needed the contractions stopped. My doctors act quickly and find a medicine to get the contractions under control. The bleeding soon stops as well. The next morning December 13 we are given more devastating news ... an ultrasound reveals the fact that Ian does indeed have transposition of the great vessels. My heart can bear no more. I vividly remember one of the NICU doctors telling me that "We should not hold out much hope for this baby either" A heart defect coupled with probable lung prematurity this is just not a good combination. I cannot even begin to put into words the emotions I was feeling at that time. Looking back I wonder how we ever survived it all. God's grace was sufficient just as He promises. Days and weeks drag on. Taylor's situation is looking worse with each scan. She has severe IUGR. She is so much smaller than Ian & Christian. At 30 weeks they are each over 3 lbs. And Taylor only 1 ½ lbs. The doctors think her small size may be a sign that she could have Trisomy 18. Her blood flow into her umbilical cord is extremely poor and she has little fluid around her. Even though we've made it to 30 weeks (a true miracle), she is far too small for the ECMO or life saving surgery she will need to correct the hernia. I want to be hopeful but I am so scared for her. I ask God to please make her path very clear to us. I did not want for us to have to be the ones who would have to decide her fate. The NICU doctors were wonderful. It was the same doctors who had cared for Tara and Rheannon. They assured us that they would be there for us every step of the way, and they were.
Saturday February 6, 1999 we have made it to 31 weeks today. By early afternoon I'm contracting more than usual. By 5:00p.m. I'm at the point of no return. The stitch in my cervix is threatening to tear and they cannot get the contractions under control. They get me prepped for a C-section. God was working every step of the way. The NICU was fully staffed, Skip and the girls were with me as well as my parents. I was so worried things would happen in the middle of the night and Skip would not make it in time. They were also able to give me an epidural. This was also an answer to prayer because I had to be completely under for my first delivery. I wanted desperately to be awake to be a part of any decisions regarding our babies. I did not want Skip to have to do it all alone. I called to have the prayer chain at our church started before going to the OR. I pray and ask God to please help me as I have never known such fear in my life. This was it. I just wanted to keep the babies inside of me where they were safe and alive. All that was waiting for me in that delivery room was uncertainties especially for Taylor and Ian. Certain death also awaited me there because there was Saige. Would I want to see her? Skip knew for sure that he wanted to, I was not so sure. Before they take me, I give Tara, Rheannon, and my parents a kiss. The girls are both crying, my doctor assures them that he will take good care of me. The epidural is placed and they bring Skip in with me. He prays with me before they begin. It is impossible not to sense the tension in the OR as they begin. And so on February 6, 1999 we welcomed; Ian Remington came first at 6:27 pm weighing 3 lbs 6 oz and 16 1/4 inches long. Christian Earl, 6:28 pm, weighing 3 lbs 4 oz, 14 3/4 inches long. Taylor Saige, 6:29 pm, 1 lb 8 oz, 13 inches. Saige Leigh, 6:30 pm 3 oz, 8 inches.
Ian, Christian, and Taylor all entered the world crying. Taylor's was faint, but she cried and that gave me hope. Thank You Lord.
Skip went to check on the babies as the doctors began to stitch me back up. My joy is very short lived as Skip reenters the room crying. He tells me that other than a double thumb Taylor appears normal, bur the doctors think she has little to no lung function. They want to know if we want them to put her on a vent or just let her go. Before I can even answer a NICU doctor tells us that she did pink up and so he felt we should put her on a vent and do some blood gases.
As they are finishing with me Skip comes back, the look on his face says it all...Taylor has declared herself. She does not have enough lung function to live. Did we want to keep her on a vent or just hold her for whatever time we might be given? Thinking back on it now is so unbearable. At the time it seemed so surreal. I felt as though I was on the outside of someone else's life and I was just watching. Something this horrible could not be happening to us. I was emotionally numb!
As he finished sewing me back up, my Dr. tells me that he will take me to see the babies. I could not believe this. We were going to have to meet our little girl only to have to say good-bye. As much as I thought I had prepared myself for this scenario, I was in no way prepared. Nothing and no one could possibly prepare you to say good-bye to a precious life that's only just begun. We were to have a lifetime and instead we would have only moments. As they wheel my bed into the NICU we are surrounded by doctors and nurses. Skip was holding Taylor and he gently placed her in my arms. Skip is holding me as I'm holding Taylor. She is so tiny but so beautiful. Such big and beautiful eyes for such a tiny girl. The nurses said she opened them big to look at her daddy. It seems we only had time to tell her that we loved her before she left us. I thank God for the time that He did give us. I could see and feel the emotion in the NICU that night. So many doctors and nurses had been hoping and praying for a miracle for Taylor. I guess the miracle came in that Taylor was a fighter. She kept going against all odds, and she kept on fighting long enough to allow us to meet her while she was still alive and to glimpse into her big and beautiful eyes even if only for a moment.
After Taylor died in our arms, they take me to see Ian and Christian. Then I have to be taken to a recovery room for observation. They allow Skip to bathe Taylor. Rheannon wants to help him with this. Tara did not want to be a part of this, she was scared. I'm angry because they did not allow me to be a part of this. I am glad that Skip got that chance to be with Taylor though because he would have to travel to another hospital to be with Ian later that night. After Skip and Rheannon bathed and dressed Taylor, they let all those who wanted to hold her to do so. It was then that Tara changed her mind and wanted to hold her sister. The nurses were all so amazed at the strength and dignity Tara and Rheannon exhibited that night. I have a beautiful picture of each of the girls holding Taylor that I will always cherish. Skip, the girls, grandparents, many who loved her held her until around midnight. Skip and Tara and Rheannon also chose to see Saige. Skip asked if I wanted to see her. He told me that her little body had really collapsed. She now weighed only 3 ounces and she was somewhat mangled from delivery. I just could not bring myself to even look at a picture of her that evening, let alone to actually view her in this condition.
My emotions were just absolutely raw ... I felt as though my heart could bear no more pain and so I declined. A decision I regret now, but I did what felt right at the time. There again, I was so proud of my daughters and their strength. After they had seen Saige, they told me that she looked like a little dinosaur. The honesty and straight forwardness of a child is amazing.
Around midnight everyone left. I'm still in recovery, grandparents take the girls home, and Skip needs to go to the other hospital that Ian is being flown to. Diane, an ultrasound technician for my Dr. and who is also a bereavement counselor offers to stay the night with me. This is very welcome since Skip cannot stay with me. Diane was such a blessing to me that night, she took many pictures of Taylor and Saige. She got their footprints and handprints and she also encouraged me to hold Taylor. I was scared. I had not seen her since she had died in our arms. Diane reminded me that this would be the only time that I would have with her. I ask Diane to bring her to me. I will always cherish those hours I had with Taylor. She was dressed in a little white dress and matching bonnet. My beautiful little girl. I held her in my arms for hours. I would nod off from time to time and wake to find her in my arms. She looked as though she was only sleeping. It felt so right to have her in my arms. I did not want it to end. As Diane took Taylor from me, I just could not allow myself to think of the reality of it all.. this was it. There will be no firsts for Taylor. No first smile or first steps. There will be no good night kisses. Our only kiss will be that of good-bye. This was the most heart wrenching pain imaginable, and yet at least we had these few moments with Taylor. We would not have them with Saige because her frail little body could not be held, and our two other sweet babies, we only have a few ultrasound pictures of their brief time with us. We do, however, have the hope of being reunited with them one day in Heaven.
Christian did well right from the start. He was our one healthy baby. He was also one of the babies they would have reduced out of the pregnancy because of his placement in my uterus. He has the biggest blue eyes and the chubbiest cheeks. I cannot imagine our lives without him.
Not long after Taylor's death, Ian began having cardiac problems. He was flown the night of his birth to Hershey Medical Center where they performed heart cath to temporarily save his life. This procedure would temporarily allow his blood to mix until he was stable enough for them to switch the vessels of his heart. When he was six days old, they performed his surgery. He was the tiniest baby they had ever attempted the surgery on.
The 7 hour surgery went well, but 7 hours post-op Ian's vital signs plummeted causing severe damage to the left ventricle of his heart. They told us that Ian probably would not survive that day. I remember praying for Ian and for the first time in my life realizing just what God had done for me in sending His one and only Son to die for me. What right did I have to ask God to spare my son's life when He had so freely given His own Son's for mine? We did pray for Ian though, and God intervened and saved Ian's life.
For almost one month we could not even face or deal with the death of our daughters because at that time Ian's outcome was so uncertain. March 09, 1999 Ian is stable enough to send back to York Hospital to feed and to grow with Christian. This is an answer to prayer because we are exhausted from traveling between the two hospitals. Now we must face the inevitable ...saying goodbye to our babies. March 11, 1999, we held a memorial service at our church. We are touched by the number of people who came. Nearly 100 people came Many in our families came, as well as people from church, doctors, nurses, ultrasound techs. We were truly blessed by so many coming to share in our sorrow. The next morning we buried Taylor & Saige together in one little white casket. It seemed only right to bury them together ... they began life together and so it should also be in death for them- together forever.
Christian came home 3/28/99 and Ian 4/08/99. They are filling our lives with much laughter, joy, and love. Christian and Taylor had the same little profile, and I'll bet Saige probably looked like Ian. I like to believe that we'll always have a little glimpse of them in Ian and Christian.
To Taylor, Saige, and our two other babies we lost, we would like to say that we will always love each of you. We thank God for the time that He gave us with each of you. We now entrust each of you back to Him. It is a comforting thought for us to know that you will be held in the everlasting arms of our Lord, and that we have the hope of being reunited one day in Heaven when we will have eternity to get to know each of you.
In closing, I would like to say that through all of this that God was Faithful.. We have so much to be thankful for. We have our beautiful children both here with us as well as those in Heaven. I had two wonderful doctors and their staff who helped me through an extremely difficult pregnancy. We were blessed to have an excellent hospital for my lengthy stay. The nurses went out of their way to make things bearable for me and my family during that stay. York Hospital also has a wonderful NICU staffed with caring and compassionate doctors and nurses. We were also fortunate enough to have one the finest pediatric heart surgeons to do Ian's surgery at Hershey Medical center, as well as a great NICU and PICU who saw Ian through an extremely critical time. We thank God for each and every person who helped us through this difficult time.
I'm thankful for being blessed with the most wonderful man to call my husband. I always had his love and support surrounding me and holding me... helping me every step of our journey. God also gave me the special gift of two strong and courageous daughters ... Tara and Rheannon were so wonderful throughout my bed rest at home, my hospitalization, and everything that followed the birth. I know they were so scared, but they hung in there with us through all the tears and the triumphs. They are now wonderful big sisters.
We were also blessed with family and friends who selflessly gave of themselves and their time to pray for us, provide childcare, cook meals, etc. My prayer is that some day doctors will find a way to make the odds for surviving CDH much higher they are today. In my heart of hearts, I feel that one of the medicines I took will someday be linked to CDH ... only time will tell. Thank you for taking the time to read this.
Sincerely,
Taylor's mom, Chrissie Cooper (Pennsylvania)
This is the story of our precious daughter, Taylor Saige Cooper. Taylor came to us, as well as left us, on February 6, 1999. In only a few weeks it will be one year ago already. At times it's as if it were only yesterday, and at times it's as though it was a lifetime ago. I would like to honor her by sharing her story with you.
My name is Chrissie Cooper. My husband, Skip, and I will be married 10 years in March. We have twin daughters, Tara and Rheannon, who are eight years old. We also have two sons, Ian and Christian who are 11 months old. They are Taylor's little womb mates. Taylor was part of a very unique pregnancy. Taylor was one of a sextuplet pregnancy. Ian and Christian are the only survivors of the pregnancy.
My first pregnancy was achieved with the help of Clomid. It was a very difficult pregnancy as at 24 weeks I was diagnosed with an incompetent cervix. I spent 6½ weeks hospitalized hanging head down and feet up. Tara and Rheannon entered the world 10 weeks early very tiny but healthy. When the girls were four, we decided to try again to conceive. Clomid was again prescribed. I developed a serious complication from it, and could no longer use it. Injectable drugs were then suggested. These drugs made me nervous. I did not want to get pregnant with high order multiples, and so we declined for the time. After 2 ½ years of trying without success, we finally decided to try the injectable drugs. We researched them thoroughly and spoke at great lengths to our fertility specialist about the drugs. We had also decided to proceed on any cycle that more than three follicles were present. Three follicles would optimize our chances to conceive just one baby, and there was a less than 5% chance that all three follicles would be fertilized- Even if they did, at best we would have triplets. In July of 1998, during my second cycle of the drugs, I had to be hospitalized due to severe ovarian hyper stimulation. This is a serious complication of the ovulation inducing drugs. I had 30 pounds of fluid accumulated in my abdominal cavity, my kidneys were closing down ... I was gravely ill. It was during this time, that we found out that I was pregnant. We could not believe it! Skip and I were both immediately scared though. I had been on so many drugs for the hyper stimulation. Would the baby be harmed by any of the medicine we asked. We were told not to worry. They assured us that all the drugs used to treat me were safe for use in pregnancy.
After a two weeks hospital stay, I was sent home on bed rest. I was still very ill. The fertility doctor wanted to do an ultrasound during the sixth week of my pregnancy to confirm the pregnancy and to make sure it is in the uterus and not the tubes. In the back of my mind I was suspecting twins or triplets because my HCG levels were high. I was however not prepared for what they told me that morning. They measured six maybe seven sacs in my uterus. It was too soon for heartbeats, so exactly how many were viable would not be known for a few more weeks. I can only cry. My mother is in the waiting room with my daughters and Skip is at work. My mind is spinning. The chances of carrying this many babies to viability are quite slim. I also have to have my abdominal cavity tapped again because it is filling with fluid and I cannot breathe.
I call Skip at work and give him the news over the phone. He responded with a calm that I'm sure he was not feeling at the time, but he assured me that we were just going to trust the Lord for whatever was ahead of us.
Two weeks pass, and again a scan is done to see for sure how many babies there are. There are six babies. One baby's heartbeat is weak and they think probably will not survive long. Fetal reduction is given as an option. We had told our Dr. that this was just not an option. We had discussed our feelings regarding this matter with him even before going on the drugs. It was just NOT something that was right for us.
One week later another scan reveals that one of our babies has indeed died. We are now being turned over to a perinatologist. They will be in charge of my entire pregnancy. Our first meeting with the doctor was overwhelming to say the least. The risks for the five babies as well as for me were great. I'm still on bedrest at home and that would have to continue. I will have to be hospitalized around week twenty for the duration of the pregnancy. There is a 50 to 60% chance of losing all the babies before the 18th week. They warn that the risk of congenital abnormalities is greater because of the number of babies we are carrying. Of course we are at great risk for a very premature delivery and with that comes the risk of severe complications to the babies. I was at risk for life threatening complications during the pregnancy and delivery. Still, fetal reduction was not an option for us. We were just going to let this in God's hands. It was all up to Him.
I am scanned weekly. Week nine reveals that another one of our babies has died. The reason unknown. We are saddened but not allowed to grieve. Doctors feel this gives the other babies a better chance now that they don't have as many to share space and nutrients with. For us though it was horrible... these were our children and we will never get to meet these two little babies in this lifetime. We wanted to grieve, but instead had to keep focused for the sake of the surviving babies growing inside of me.
Week 13 a cerclage is placed in my cervix. All four babies seem to be doing well. Then, one week later, I began bleeding very heavily. I am again hospitalized and the doctors cannot find the source of the bleeding at first. All four babies are doing good, but the bleeding is not a good sign and it is causing my uterus to contract. The doctors tell me that they feel there is no hope for the pregnancy. They also warn that my life is already being threatened because my blood counts are dangerously low and if I continue to bleed then my life is at risk. To give us some kind of a chance, they recommend reducing the pregnancy to one baby. We again decline. My mental state is so frail right now. I am afraid for these precious babies. God knows my pain and my fears and uncertainties regarding this pregnancy. He also loves each of these little lives. We need to find rest and comfort in that. It is around this time that we find out they we are carrying two boys and two girls. Baby A is a boy his name is Ian, Baby B is our other son, Christian, Baby C a girl, Taylor, and baby D our other daughter her name is Saige. Ian, Christian, and Saige are all good size, but Taylor is much smaller than the other three. The doctors warn that we will probably lose her before too long. They have the contractions under control, I'm given a blood transfusion and sent home on a contraction monitor and strict bed rest.
In early November we were in for our weekly scan and I cannot shake the feeling that something is wrong. I voice my fears to Skip, and he reminds me to stay calm. We soon find out that my fears are correct. The doctor says that something is wrong and we need to talk. They take Tara and Rheannon in to another room. The Dr. tells us that Baby C, Taylor, has a Congenital Diaphragmatic Hernia. She proceeds to give us all the horrible facts and statistics. She explains that this can go along with other congenital abnormalities, but any further testing to see if this was the case would be impossible because it would risk the other babies. It's amazing how quickly your world can turn upside down. My biggest fears with this pregnancy to this point had been miscarrying or premature delivery. Birth defects were the furthest thing from my mind. The CDH was bad enough, but Taylor was small and the risk for premature birth made her odds much worse than in she were the only baby we were carrying. Again, fetal reduction is given as an option. Absolutely not ... we have to give her every chance. This defect will cause her no problems as long as she's inside of me. God created her and loves her as do we. We must give her every chance. It was at this point that I found out about CHERUBS. A friend of mine got your info from the internet, and quite honestly as I began to read the stories I became even more terrified than before. I had to put the newsletter away. It was just too much at that point in my pregnancy
December 1, 1998 I am admitted to the hospital for the duration of this pregnancy. I am 20 weeks along now. Quads typically deliver around 27-30 weeks gestation. On December 10 my first ultrasound since coming to the hospital is to be done. I was so tense because in the past they had been looking at baby A's (Ian) heart. We're told that it's not until around week 22 that they are able to get good views of the heart ... that's today, 12/10/98. Ian is not in a good position today so they cannot tell. They do though confirm my suspicions that Ian may have a congenital heart defect called transposition of the great vessels. I cannot believe this. How could two of our children have such different and devastating birth defects? No time to think of it right then.
They had to move on to look at the other babies. Baby B (Christian) looks great his heart appears normal. Baby C (Taylor) her heart is small and pushed to the right due to the CDH but appears normal in its structure. Baby D (Saige) as they begin to scan her I ask "What are we looking at here ... something does not look right to me I say. "The room was full. Myself and Skip, our daughters, 3 doctors and two technicians and yet the silence in the room was deafening. "I'm sorry Chrissie this baby has died" the doctor quietly tells us. How can that be? I ask. She had looked great two weeks ago. Of the four remaining babies they had expected this for Taylor, but it came as a total shock for Saige. It seemed as though things were spinning hopelessly out of control. My emotional state is so frail. I thank God for my husband who never gave up hope and always reminded me of the fact that God was in control and allowing all of this for a reason. Skip was an amazing source of strength for myself and our daughters who were terribly scared and confused through all of this. We also had many people and churches upholding us through their prayers, and yet, quite honestly, most days I was very restless at heart. I wanted so desperately to help all my children, those I was carrying as well as Tara and Rheannon. Yet, all I could do was to lay in a hospital bed helpless.
Things just went from bad to worse. Two days after learning of Saige's death I began bleeding again. Saige's body was collapsing due to the other babies pushing on her and this was causing the bleeding. The bleeding was causing my uterus to contract and at only 22 weeks gestation we needed the contractions stopped. My doctors act quickly and find a medicine to get the contractions under control. The bleeding soon stops as well. The next morning December 13 we are given more devastating news ... an ultrasound reveals the fact that Ian does indeed have transposition of the great vessels. My heart can bear no more. I vividly remember one of the NICU doctors telling me that "We should not hold out much hope for this baby either" A heart defect coupled with probable lung prematurity this is just not a good combination. I cannot even begin to put into words the emotions I was feeling at that time. Looking back I wonder how we ever survived it all. God's grace was sufficient just as He promises. Days and weeks drag on. Taylor's situation is looking worse with each scan. She has severe IUGR. She is so much smaller than Ian & Christian. At 30 weeks they are each over 3 lbs. And Taylor only 1 ½ lbs. The doctors think her small size may be a sign that she could have Trisomy 18. Her blood flow into her umbilical cord is extremely poor and she has little fluid around her. Even though we've made it to 30 weeks (a true miracle), she is far too small for the ECMO or life saving surgery she will need to correct the hernia. I want to be hopeful but I am so scared for her. I ask God to please make her path very clear to us. I did not want for us to have to be the ones who would have to decide her fate. The NICU doctors were wonderful. It was the same doctors who had cared for Tara and Rheannon. They assured us that they would be there for us every step of the way, and they were.
Saturday February 6, 1999 we have made it to 31 weeks today. By early afternoon I'm contracting more than usual. By 5:00p.m. I'm at the point of no return. The stitch in my cervix is threatening to tear and they cannot get the contractions under control. They get me prepped for a C-section. God was working every step of the way. The NICU was fully staffed, Skip and the girls were with me as well as my parents. I was so worried things would happen in the middle of the night and Skip would not make it in time. They were also able to give me an epidural. This was also an answer to prayer because I had to be completely under for my first delivery. I wanted desperately to be awake to be a part of any decisions regarding our babies. I did not want Skip to have to do it all alone. I called to have the prayer chain at our church started before going to the OR. I pray and ask God to please help me as I have never known such fear in my life. This was it. I just wanted to keep the babies inside of me where they were safe and alive. All that was waiting for me in that delivery room was uncertainties especially for Taylor and Ian. Certain death also awaited me there because there was Saige. Would I want to see her? Skip knew for sure that he wanted to, I was not so sure. Before they take me, I give Tara, Rheannon, and my parents a kiss. The girls are both crying, my doctor assures them that he will take good care of me. The epidural is placed and they bring Skip in with me. He prays with me before they begin. It is impossible not to sense the tension in the OR as they begin. And so on February 6, 1999 we welcomed; Ian Remington came first at 6:27 pm weighing 3 lbs 6 oz and 16 1/4 inches long. Christian Earl, 6:28 pm, weighing 3 lbs 4 oz, 14 3/4 inches long. Taylor Saige, 6:29 pm, 1 lb 8 oz, 13 inches. Saige Leigh, 6:30 pm 3 oz, 8 inches.
Ian, Christian, and Taylor all entered the world crying. Taylor's was faint, but she cried and that gave me hope. Thank You Lord.
Skip went to check on the babies as the doctors began to stitch me back up. My joy is very short lived as Skip reenters the room crying. He tells me that other than a double thumb Taylor appears normal, bur the doctors think she has little to no lung function. They want to know if we want them to put her on a vent or just let her go. Before I can even answer a NICU doctor tells us that she did pink up and so he felt we should put her on a vent and do some blood gases.
As they are finishing with me Skip comes back, the look on his face says it all...Taylor has declared herself. She does not have enough lung function to live. Did we want to keep her on a vent or just hold her for whatever time we might be given? Thinking back on it now is so unbearable. At the time it seemed so surreal. I felt as though I was on the outside of someone else's life and I was just watching. Something this horrible could not be happening to us. I was emotionally numb!
As he finished sewing me back up, my Dr. tells me that he will take me to see the babies. I could not believe this. We were going to have to meet our little girl only to have to say good-bye. As much as I thought I had prepared myself for this scenario, I was in no way prepared. Nothing and no one could possibly prepare you to say good-bye to a precious life that's only just begun. We were to have a lifetime and instead we would have only moments. As they wheel my bed into the NICU we are surrounded by doctors and nurses. Skip was holding Taylor and he gently placed her in my arms. Skip is holding me as I'm holding Taylor. She is so tiny but so beautiful. Such big and beautiful eyes for such a tiny girl. The nurses said she opened them big to look at her daddy. It seems we only had time to tell her that we loved her before she left us. I thank God for the time that He did give us. I could see and feel the emotion in the NICU that night. So many doctors and nurses had been hoping and praying for a miracle for Taylor. I guess the miracle came in that Taylor was a fighter. She kept going against all odds, and she kept on fighting long enough to allow us to meet her while she was still alive and to glimpse into her big and beautiful eyes even if only for a moment.
After Taylor died in our arms, they take me to see Ian and Christian. Then I have to be taken to a recovery room for observation. They allow Skip to bathe Taylor. Rheannon wants to help him with this. Tara did not want to be a part of this, she was scared. I'm angry because they did not allow me to be a part of this. I am glad that Skip got that chance to be with Taylor though because he would have to travel to another hospital to be with Ian later that night. After Skip and Rheannon bathed and dressed Taylor, they let all those who wanted to hold her to do so. It was then that Tara changed her mind and wanted to hold her sister. The nurses were all so amazed at the strength and dignity Tara and Rheannon exhibited that night. I have a beautiful picture of each of the girls holding Taylor that I will always cherish. Skip, the girls, grandparents, many who loved her held her until around midnight. Skip and Tara and Rheannon also chose to see Saige. Skip asked if I wanted to see her. He told me that her little body had really collapsed. She now weighed only 3 ounces and she was somewhat mangled from delivery. I just could not bring myself to even look at a picture of her that evening, let alone to actually view her in this condition.
My emotions were just absolutely raw ... I felt as though my heart could bear no more pain and so I declined. A decision I regret now, but I did what felt right at the time. There again, I was so proud of my daughters and their strength. After they had seen Saige, they told me that she looked like a little dinosaur. The honesty and straight forwardness of a child is amazing.
Around midnight everyone left. I'm still in recovery, grandparents take the girls home, and Skip needs to go to the other hospital that Ian is being flown to. Diane, an ultrasound technician for my Dr. and who is also a bereavement counselor offers to stay the night with me. This is very welcome since Skip cannot stay with me. Diane was such a blessing to me that night, she took many pictures of Taylor and Saige. She got their footprints and handprints and she also encouraged me to hold Taylor. I was scared. I had not seen her since she had died in our arms. Diane reminded me that this would be the only time that I would have with her. I ask Diane to bring her to me. I will always cherish those hours I had with Taylor. She was dressed in a little white dress and matching bonnet. My beautiful little girl. I held her in my arms for hours. I would nod off from time to time and wake to find her in my arms. She looked as though she was only sleeping. It felt so right to have her in my arms. I did not want it to end. As Diane took Taylor from me, I just could not allow myself to think of the reality of it all.. this was it. There will be no firsts for Taylor. No first smile or first steps. There will be no good night kisses. Our only kiss will be that of good-bye. This was the most heart wrenching pain imaginable, and yet at least we had these few moments with Taylor. We would not have them with Saige because her frail little body could not be held, and our two other sweet babies, we only have a few ultrasound pictures of their brief time with us. We do, however, have the hope of being reunited with them one day in Heaven.
Christian did well right from the start. He was our one healthy baby. He was also one of the babies they would have reduced out of the pregnancy because of his placement in my uterus. He has the biggest blue eyes and the chubbiest cheeks. I cannot imagine our lives without him.
Not long after Taylor's death, Ian began having cardiac problems. He was flown the night of his birth to Hershey Medical Center where they performed heart cath to temporarily save his life. This procedure would temporarily allow his blood to mix until he was stable enough for them to switch the vessels of his heart. When he was six days old, they performed his surgery. He was the tiniest baby they had ever attempted the surgery on.
The 7 hour surgery went well, but 7 hours post-op Ian's vital signs plummeted causing severe damage to the left ventricle of his heart. They told us that Ian probably would not survive that day. I remember praying for Ian and for the first time in my life realizing just what God had done for me in sending His one and only Son to die for me. What right did I have to ask God to spare my son's life when He had so freely given His own Son's for mine? We did pray for Ian though, and God intervened and saved Ian's life.
For almost one month we could not even face or deal with the death of our daughters because at that time Ian's outcome was so uncertain. March 09, 1999 Ian is stable enough to send back to York Hospital to feed and to grow with Christian. This is an answer to prayer because we are exhausted from traveling between the two hospitals. Now we must face the inevitable ...saying goodbye to our babies. March 11, 1999, we held a memorial service at our church. We are touched by the number of people who came. Nearly 100 people came Many in our families came, as well as people from church, doctors, nurses, ultrasound techs. We were truly blessed by so many coming to share in our sorrow. The next morning we buried Taylor & Saige together in one little white casket. It seemed only right to bury them together ... they began life together and so it should also be in death for them- together forever.
Christian came home 3/28/99 and Ian 4/08/99. They are filling our lives with much laughter, joy, and love. Christian and Taylor had the same little profile, and I'll bet Saige probably looked like Ian. I like to believe that we'll always have a little glimpse of them in Ian and Christian.
To Taylor, Saige, and our two other babies we lost, we would like to say that we will always love each of you. We thank God for the time that He gave us with each of you. We now entrust each of you back to Him. It is a comforting thought for us to know that you will be held in the everlasting arms of our Lord, and that we have the hope of being reunited one day in Heaven when we will have eternity to get to know each of you.
In closing, I would like to say that through all of this that God was Faithful.. We have so much to be thankful for. We have our beautiful children both here with us as well as those in Heaven. I had two wonderful doctors and their staff who helped me through an extremely difficult pregnancy. We were blessed to have an excellent hospital for my lengthy stay. The nurses went out of their way to make things bearable for me and my family during that stay. York Hospital also has a wonderful NICU staffed with caring and compassionate doctors and nurses. We were also fortunate enough to have one the finest pediatric heart surgeons to do Ian's surgery at Hershey Medical center, as well as a great NICU and PICU who saw Ian through an extremely critical time. We thank God for each and every person who helped us through this difficult time.
I'm thankful for being blessed with the most wonderful man to call my husband. I always had his love and support surrounding me and holding me... helping me every step of our journey. God also gave me the special gift of two strong and courageous daughters ... Tara and Rheannon were so wonderful throughout my bed rest at home, my hospitalization, and everything that followed the birth. I know they were so scared, but they hung in there with us through all the tears and the triumphs. They are now wonderful big sisters.
We were also blessed with family and friends who selflessly gave of themselves and their time to pray for us, provide childcare, cook meals, etc. My prayer is that some day doctors will find a way to make the odds for surviving CDH much higher they are today. In my heart of hearts, I feel that one of the medicines I took will someday be linked to CDH ... only time will tell. Thank you for taking the time to read this.
Sincerely,
Taylor's mom, Chrissie Cooper (Pennsylvania)
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