Chrissie’s Story (continued)
This story is continued from the stories of the loss of a twin or multiple during pregnancy in this site section (see the first part). Chrissie learned that she was pregnant with 6, and was asked to decide about selective reduction. Two died in the first trimester, and then one of the other babies in the second trimester; then she learned that one of the remaining three had a birth defect and would not live past birth.
Because I had so much trouble last pregnancy with mag and terbutaline, I am placed on a blood pressure medicine to control my contractions. It does the trick. I will take it regularly now along with two injections daily of heparin to thin my blood. I’m kept in labor hall to make sure the bleeding stops and to monitor contractions. The following morning, a scan reveals that Ian does indeed have Transposition of the Great Vessels. My heart can bear no more. I am in such a dark place now… emotionally. This is a fixable heart defect, but it has to be done within the first few weeks of life. One of the NICU docs tells us that Ian’s heart defect coupled with probable lung prematurity will not be good. He tells us that he would not hold out much hope for this baby either. As I sit here, I can not even begin to put into words my feelings at that time. Skip has to be with me day and night because my depression is overwhelming. I refuse calls and visitors. I do not want to answer any more questions they might ask. They could not possibly understand what I’m feeling anyway. It seems all I can do is cry. What have I done by taking those fertility pills? is a question that runs through my mind over and over. Skip feels helpless to help me. He always offers encouragement and reminds me that no matter how bad things may appear that we need to keep trusting the Lord. I know that he is right. We could do nothing to change this situation, so worrying would gain us nothing. I could not help it though. I was worried. There were just so many variables here…too many unknowns. Many days, I felt as though I were losing my mind!
The nurses and doctors were wonderful. They had a Christmas tree put in my room and bought all kinds of decorations for the girls to make to put on the tree. The girls and Skip were allowed to sleep over with me any time they wanted. They even gave us passes for our dogs to visit me! My upcoming birthday and the holidays coming only made my blues worse. I was also missing many firsts in Tara & Rheannon’s life as well. My heart felt as though it was being tom apart piece by piece ever so slowly and painfully. Skip brought the girls in every evening to see me. After they left, I would just lie in bed and cry. Each day with its difficulties could be counted as a victory for our babies. The first milestone would be to get to viability at 24 weeks. This would be around Christmastime. It’s Christmas Eve…we’ll just have to make the best of it together in the hospital. Not so! Ten minutes after Skip and the girls arrive, Rheannon gets violently ill. So, I spent Christmas Eve and most of Christmas Day alone because Rheannon was so ill. Skip did manage to come out for an hour or so. Most importantly we had made it to viability for the babies. A very small sigh of relief. There was still a long road ahead if there was to be any hope for any of these babies.
The heart surgeon from Hershey Medical Center reviewed Ian’s scans and confirmed the congenital heart defect. The plan was to hopefully get me to 30 weeks and after the babies were born, Ian would be sent there once he was stabilized. That seemed almost impossible as my uterus was growing more irritable by the day. I was already measuring way past what someone full term measures. Physically I am in so much pain. The pressure and pain most days is hard to bear. Breathing is difficult. I’ve been on Ativan for depression, and lots of Tylenol for my pain. I shower every day. I must sit to accomplish this, and it is so painful to do that I can barely stand the thought of doing it. Other than going to the bathroom, I am at complete bed rest. I’m struggling to put on any weight. I’ve lost so much muscle mass, and I’m quite weak. I can barely walk to the bathroom because I’m so weak, and the weight and pressure of the pregnancy are unbearable when I stand. No position is comfortable. Even breathing is a task.
January…a new year. I can not help but think back to last New Year’s Day…we certainly never could have envisioned what had come to pass and now looking ahead seemed more painful yet. The Niphetapine that I was on to control my contractions was no longer working. I am placed on Indocin to control contractions. This works great for me. The only problem being that it can decrease the fluid around the baby or prematurely close the ductus of the baby’s heart. This would be especially dangerous for Ian as they needed his ductus to stay open as long as possible. I am scanned often. Ian and Christian are both growing well. Taylor is doing very poorly. She has severe IUGR. She is much smaller than the boys. She also has very little fluid around her. I question using the Indocin because I don’t want to make things any worse for her, but it needs to be done because if I’d deliver, she would be too tiny to survive. With each scan in January I am growing more fearful that Taylor will not make it. She’s a fighter though. She keeps hanging in there despite the odds.
We begin planning for Saige’s funeral. A funeral before her birth. This should not be…a life ending before it’s begun. I’m struggling to understand all of this. In the back of my mind I wonder just how many children we will be have to bury.
We pray as a family every evening before Skip and the girls go home. Many people and churches are supporting us through prayer. I get cards from people all over the country. Even a few from other countries. Each day I search my Bible for comforting words. I know God tells me that He will never leave me nor forsake me. I must cling to this promise. I try to remember that God is allowing this for a reason. I find many of the Psalms soothing to my soul.
We’ve made it to 30 weeks. Something they thought I could not do. Christian and Ian are doing well. Taylor however, has barely grown at all. The boys are over 3 pounds, and Taylor only 1 lb. 8 oz. This means she probably has very little lung function, and would be too small for the ECMO or the surgery that she will need to save her life. I can barely stand the thought of delivery because of the uncertainties for Ian & Taylor. I’m fearful that something will go terribly wrong. I don’t even allow myself to sleep at night. The doctors assure us that they will help us with any decisions concerning Taylor. I ask God to please make her path very clear to us. I pray that there will be no gray area concerning her outcome. I pray for Skip to be able to be there with me. My labor came very quickly last time, and we felt certain it would do the same again.
February 6, 1999. I’ve made it to 31 weeks today. Skip and the girls slept over last night and at 8:00 a.m. we’re having a scan. There is concern because Ian’s fluid has gone down. Dr. B. sees that Ian’s fluid is even more decreased, if things are no better tomorrow, they will take the babies. He also assures us that the fluid could be better by tomorrow. We pray that I’ll be able to hold on a few more weeks, but in my heart I felt delivery was close at hand. Skip and the girls are going to a birthday party this afternoon. I remind him to make sure he has the cell phone. I’m not feeling well by lunchtime. My parents come to visit around 1:00. By three o’clock I’m feeling frequent little contractions, so I call for my nurse and place myself on the monitor. Dr. B., a resident who had been working with my perinatologists was on duty and came to examine me. The stitch was still in place, but she thought I seemed a little more dilated. She phones Dr. B. to come. I immediately call Skip before going to labor hall. I tell him to come quickly, I know in my heart of hearts it’s time. He asks no questions. He just says, “We’re on our way.”
By 5:00 it’s determined it’s time to deliver. I’m prepped for the section. I am so scared. God is working though. The NICU was fully staffed with three doctors, plenty of nurses, and Skip and the girls are there along with my parents. I call the church and ask for the prayer chain to be started. This is it. I give everyone a kiss and head off for my epidural. This is also an answer to prayer because I had to be totally under for my daughters. I wanted to be awake especially to be involved with decisions regarding Ian and Taylor. I’ll never know how the anesthesiologist was able to give me the epidural because I was shaking uncontrollably. He did though. We also called Maureen who is my cousin’s wife and a NICU nurse to come in. We had made plans for her to go to Hershey with Skip if Ian needed to be transported soon after birth. She would be moral support for Skip plus she had the medical knowledge to help with any decisions. Diane, and ultrasound tech from Dr. B.’s office was also called in. She is also a bereavement counselor, and had been working with us all along.
I can not even allow myself to think about what is about to come to pass in that delivery room. My heart is pounding and my head spinning. I do not know which is worse…the known…one stillborn baby, or the unknown… what would happen to Taylor and Ian? Will Christian be strong enough as well? I just want to keep Taylor inside of me where she is safe. God please help me as I have never known such fear.
A full delivery room. Skip, Maureen and I pray just before they make the incision. I can sense the tension and uncertainty in the room. 6:27 p.m. Ian Remington 3 lbs. 6 oz., 6:28 Christian Earl 3 lbs. 4 oz., 6:29 Taylor Saige 1 lb. 8 oz. Praise God. All three babies cry. Taylor’s is faint, but she cried. Not a word is spoken as they take Saige’s lifeless body from mine at 6:30. I can feel them remove her though. Skip heads to the NICU to check on the babies as they begin to sew me back up. My joy is shortlived. I know something is terribly wrong as Skip re-enters the delivery room crying. He tells me that Taylor seems to have very little lung function. Did we want to put her on a ventilator or just let her go? Before we can even decide, Dr. L. said that she did pink up, so he felt it was worth puffing her on a vent and doing some blood gases to see for sure how much lung function that she has. Other than a double thumb on one hand, she appears normal. There were some questions as to whether she had Trisomy 18. Skip again returns, the look on his face says it all. Taylor has declared herself. She has little to no lung function. I believe it was at this point that I just went into emotional overload. I felt as though I was only dreaming. Something this horrible couldn’t really be happening to us. Nothing seemed real at the time. Skip and I did make the decision to take her off the vent, and to just hold her for whatever time we might be given. They quickly finish my section, and Dr. B. tells me that they will take me to see the babies. I grab his hand, and ask him “How do I say good-bye?” He assures me that I will find the words. I can not bear the thought of seeing her only to say good-bye. I wish I had given more thought to this…how to say good-bye. I certainly could not think clearly now. I was in a haze. So little time… so much to say.
I’m taken in my bed to the NICU where Skip is holding Taylor. He places her in my arms. I can not believe how tiny she is. So beautiful though. I am so preoccupied with her dying that I can think of nothing else. I remember myself saying “She’s turning blue” over and over again. I know I told her that I loved her. It seems as if I told her little more than that before she died in my arms. Skip held me while I held her as the angels carried her to Heaven. There were doctors and nurses surrounding us. I could see the pain in their eyes as well. So many had been pulling for her and hoping for a miracle. I guess the miracle came in that Taylor was a fighter, and she kept fighting long enough to meet us and to allow us a glimpse into her beautiful and enormous eyes while she was still alive. “It’s not fair,” I cry out. Why did it have to end this way?
Christian seems to be doing well. He is on CPAP, but he really looks great. Ian however is not doing well. He came out pink and crying, but quickly turned blue. The ductus of his heart is closing already. Arrangements are made to fly him to Hershey Medical Center. They will have to go through his groin to pull a hole into the chambers of his heart to allow his blood to mix. This will hopefully hold him until he is stable enough for his surgery. He looks so pale when they wheel me to his bedside. They are still working on him so I can only say hello. The doctors are also worried about me. They need to get me to recovery where they can keep a closer watch over my condition.
Things are so hectic with all that is transpiring that Skip and I have no time to be together. We needed one another, but that was a luxury that we would not be allowed. We have been robbed of so much already. It would have been nice if we could have at least been able to be together.
While I’m in recovery, Skip and Rheannon bathe and dress Taylor. Tara does not want to see her at first, but later changes her mind. They let anyone hold her who wishes to. I wish I could have been a part of all of that. I was not though and I’m not sure why. I ask the nurse why I can not feel anything …emotionally that is. She says it is my body’s defense mechanism. I was on emotional overload and the mind and body can not possibly deal with so many emotions at one time. I wanted to feel something though. Skip assured me that it would all eventually surface, and it certainly did! Again, I wish we would have given more thought to all we should do in the event that Taylor died. I did have dresses picked for both Taylor and Saige. I said I wanted pictures and handprints, footprints, and hair if they could do it. No matter how much you do, it is never enough. These were our babies. We were to have so much more than this…a few snapshots, footprints, etc. No one should have to give thought to such things. Now with things getting worse for Ian, I certainly can not think clearly now about all I want or do not want to do. Things appeared to be spinning hopelessly out of control. It is now, after the fact, that I am haunted by regrets… Why didn’t we take more pictures, why didn’t we have the video camera? The list goes on and on. Always in the back of my mind tormenting my thoughts. When things get to out of control for me, that is when I have to stop and think of Skip and me holding the girls and gently handing them back into the arms of Jesus. That thought alone is a ray of hope for me. Meanwhile, Skip gives the doctors at Hershey consent to do Ian’s surgery. He and Maureen will go to be with Ian. They allow me another quick glance at Ian before they put him in the helicopter. I ask God to please protect Ian as he flies, and Skip and Maureen as they drive. Everyone arrives safely at close to midnight. Ian will be the smallest baby they will have ever done this procedure on. There is nothing I can do but wait and pray until I get word from Skip on how everything went.
Family and friends leave the hospital around midnight. Diane from Dr. B.’s office offers to spend the night with me. This was very welcome as I was extremely tense and scared. She took care of taking pictures of Taylor and Saige for me, as well as footprints. She was such a blessing to me that night. Skip and the girls saw Saige, but I chose not to. I knew my body had started to reabsorb her and I was fearful of what she might look like. I felt as if I could bear no more that night. I did ask for pictures of her to be taken that I could look at when I felt ready. It would be weeks until I was ready. I was taken aback by the pictures, but she is still my beautiful little girl and I will always love and miss her. Diane asks me if I would like to hold Taylor some more. At first I am afraid to, but Diane reminds me that this will be the only time that I have. I am so glad that she convinced me to overcome my fears, because I will always cherish that evening I had to hold Taylor in my arms. She looked as if she were only sleeping. Again regrets…Why didn’t I unwrap her and look at her little hands and feet? Why didn’t I remove her bonnet? Fear is an awful thing. I allowed it to rob me of so many things. Things I can never get back. It felt so right to be holding her. I just could not imagine that it would be the only time I would hold her. Diane took many pictures of me holding my precious daughter. Not a day goes by that I don’t look at those pictures. As Diane took her from me many hours later, I just could not allow myself to think that there would never be another chance to hold her. Just thinking of it now tears at my heart. I wish I would have held her longer. Then again, no matter how long it would have been, it would not have been enough. We were to have a lifetime. Instead we only had moments. We did not even have that for Saige. Her frail little body was unable to be held. It’s so unfair…never being able to hold your own child. The pain of it all is hard to fathom.
By five in the morning still no word from Skip. Diane talked with me all night. Finally Skip and Maureen come Great news… Ian is stable for now. Praise the Lord.
The next few days were spent recovering. I would spend as much time with Christian as I could. It was the only sanity I had at the time. Skip would go to Hershey to see Ian. 2-10-99 Skip takes Tara & Rheannon to see Ian. He comes back and tells me that Ian’s surgery is to be two days later. We needed to go the next day to meet with the surgeon. My doctors release me early to take care of this. The surgeon tells us that Ian will again be the smallest baby they have ever done the surgery on, but if we don’t proceed then Ian will die. What choice do we have? I go to see Ian. This is the first since the night he was born. He is so sweet. Again I am helpless to help my son. He is in the Lord’s hands.
I went home that evening for the first time in around 75 days. I was in horrible pain. Tara & Rheannon were so excited to have me home and I was miserable physically and emotionally. They had prepared a candlelight dinner for Skip and me with the help of my mother-in-law. I could not help the way I felt though. I felt as if I were being swallowed alive by uncertainties regarding Ian’s future. This was not the homecoming I had envisioned many months earlier. It was to be a happy one. There were to be six babies. We were all to be happy. Instead only tension and pain faces me at home. I felt so bad for Tara & Rheannon. They were so happy to have me home, and yet there I was so unhappy.
The next morning we head to Hershey. Ian goes to surgery sometime around one o’clock. We send him off with a kiss. The waiting begins. The first few hours of waiting were not so bad. God had given us a sense of peace about Ian. My parents had come to wait with us. My mother-in-law was caring for my daughters. The last few hours of waiting seemed endless. Finally around 8:00 p.m. we got word that Ian was out of surgery and doing well. In another hour or so we could see him. He looked so good for all that his little body had undergone. They had told us that we could go home if we liked. We were not comfortable with that. I did not want to be that far away from Ian. Never in our wildest dreams could we have imagined the turn of events that would take place later that evening.
Around 2:30 or so Ian’s nurse sat by my side and whispered that we needed to get over to the PICU. She said Ian was having problems. I could tell by her expression and her tone that it was serious. I quickly awakened Skip. We went rushing over only to be told that the doctors were working on Ian and that we could not see him. We waited 4 long hours not knowing if Ian was still alive or not. They would only send a nurse out every once in a while to let us know that he was still being “worked on” by doctors. We called family and got them praying for Ian. Finally around 8:00 a.m., a doctor came and told us that Ian ‘s vital signs had plummeted and as a result the left ventricle of his heart had suffered severe damage. He was extremely critical. They doubted he would survive the day. We were in shock. He had looked so good only a few hours earlier. They took us to see Ian for a few minutes. He was being kept alive by infusion of 12 to 15 different medicines. My heart felt as though it were being tom apart all over again. We could do nothing for this dear little son of ours, other than watch as doctors and nurses hustled at his bedside to try to keep him alive. I could gauge the graveness of his situation by his nurse. He needed one-on-one nursing. It seemed as though not one second would pass that she did not have to be doing something to sustain Ian. In the depths of my soul, I could sense that they were expecting Ian to die. We needed a miracle.
We took it all before the Lord. For the first time in my life, I realized what God truly did for us in sending His one and only Son to die for our sins. I remembering thinking what right do I have to ask God to save my son when he so freely gave up His? We did pray for God to spare Ian though.
The first few days Skip spent hours just rubbing Ian’s little head. I could barely stand to see him in the state that he was. I could barely recognize him as my child. We would stay day and night at the hospital. Two days after his surgery in the middle of the night, I felt the need to overcome my fears and just go to him. I sat by his bed and sang to him and rubbed his little head. The nurse commented on the fact that Ian’s vital signs would improve when Skip and I were with him. I realized that Ian needed to know that both of us were there for him. I think I was afraid of losing him as well, so I kept a distance those first few days, but that night I realized that I was going to be there for him no matter what. The miracle we had prayed for happened. An echo showed that Ian’s left ventricle pumping action was getting stronger. The doctors had a glimmer of hope. Ian spent two long weeks in extremely critical condition with one complication after the other. We know it was divine intervention that saved Ian. On March 9, 1999 our 9th wedding anniversary, Ian was sent back to York Hospital NICU with his brother Christian. He was now a “feeder and grower” just like his brother.
Christian had been doing well right from the start. He was strong and healthy. We were worn out from running between the two hospitals, but now our boys were finally together again. Praise the Lord! Each time I saw Christian I knew that we had done the right thing by not choosing fetal reduction because you see, Christian would have been one of the babies they would have taken because of his position in my uterus. He was our one healthy baby. I am in no way condemning anyone who has to make that decision, but rather trying to get the point across to the medical community that the field of infertility and those who practice it need to make great strides to insure that no family has to make the painful decision to reduce a pregnancy because of the number of babies a woman is carrying. This madness needs to stop. There need to be some limits and guidelines. I want to spare any family the pain that we have endured through all of this.
Thursday March 11, 1999 we have a memorial service at our church for Taylor and Saige. It does not seem real to me. I have had to put these emotions on the back burner for so long now. Now that the boys are doing well, I have to deal with the death of my precious daughters. Close to one hundred people attend our service. We are touched by the many people who came to show their love and support. Maureen reads her minute by minute account of the night the babies were born. It was as if everyone was taken back to that night and they are all there in the delivery room with us. Diane reads a book called Mommy please don’t cry, a beautiful book written from the lost child’s perspective in Heaven. I had made a month by month account of my pregnancy and birth to read. I wrote about our daughters and to our daughters. I prayed for the strength to read this. It would be the only thing I would ever get to do for my daughters. God gave me the strength to read it aloud. Skip read a letter he wrote. We played the song “A Visitor From Heaven” by Twila Paris. One of our pastors spoke, and then everyone got together after the service for a meal that my husband’s family had prepared for everyone. I had pictures of Taylor at different places in the church. I had the little dresses and bonnets I had picked for Taylor and Saige lying side by side. Taylor’s even had a little blood stain from her umbilical cord. I pinned her hat over it so no one would see. That blood stain means a lot to me. It stands as a reminder to me that she was alive and it was not a dream. She was here and we will always love her. Saige was too little and frail to dress. I wish now that I had seen her. Sometimes it’s as though she never existed. I guess because I never got to physically see her or touch her. I know that she too was real and we will always love her. I love to look at their ultrasound pictures. It reminds me of the days that they were alive and happy living in the perfect environment of my womb.
There are so many things that I hope people will learn from our story. One is that multiple births do not always have a happy ending. It ends many times with one, two, three or all of the babies being lost, I hope too that outsiders will realize that each and every lost child meant the world to the family that lost that baby. I can not believe how many people will say things like “Well at least you didn’t have the chance to know the babies and then lose them.” Don’t they realize that there in lies your pain? That there will be no first words or first steps. There will be no getting to know that child here on earth and as much as they want to minimize that pain, we know it ‘s a pain that runs deep. I am also sick of people telling me to be grateful for what we do have. We are probably more grateful than the average person for our children because we know what it is to lose a precious life. I would like to see the media be more responsible in their portrayal of multiples so that the public can see the painful side as well as the happy. As I said earlier, I feet the treatment of infertility needs to make greater strides to insure that these high order multiple pregnancies do not occur…They just carry too many risks. The human body was not intended to carry so many babies. Yes a few have done it, but the majority end in heartache.
I could go on and on. I’ll update this letter someday with all the other things that I hope can be learned from our story. I only hope that this story touches even one person’s life in a positive way. That would be a wonderful tribute to Taylor and to Saige. We feel they must be very special little girls, because God chose to keep them with Him. Their lives were so short but impacted us in powerful ways. Days that are too hard to bear, I simply close my eyes and envision Skip and me gently handing our daughters into the loving arms of Jesus where I know they’ll be waiting for us in eternity.
Christian came home March 28, 1999 and Ian April 8, 1999. This was truly amazing considering all that Ian had been through. The boys are cooing and smiling and stealing our hearts. Tara & Rheannon are great big sisters. I am filled with joy as I watch the boys grow and yet at the same time my heart aches as I cannot help but wonder about what Taylor & Saige would be like now if they were here. I like to believe that a little part of them lives on through Ian & Christian. It’s been 6 months now, and I feel that for the most part, people think that we should “be over” our daughters’ deaths. I only wish that people would understand that it is a pain that will last a lifetime. I do not think that there is any healing of the heart, only an acceptance for the circumstances you were dealt, and for me a faith that it all came through a loving and omniscient Heavenly Father who loves me and know what is best for me. So for now, I will hold the hands and the hearts of my children here with me, and I will hold the memories and the hearts of my daughters knowing their hands are being held by our Lord.