Living Miracles: Stories of Hope from Parents of Premature Babies

Living Miracles: Stories of Hope from Parents of Premature Babies

by Kimberly A. Powell

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Twenty-two engrossing stories of babies born prematurely, written by those who felt the agony and the elation the most—their parents.

In painstaking and heartfelt detail, these parents share their ordeals: their fears, their joys, the stories of where they turned for help, their tips, and most importantly, their triumphs.

Meet babies like:

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Twenty-two engrossing stories of babies born prematurely, written by those who felt the agony and the elation the most—their parents.

In painstaking and heartfelt detail, these parents share their ordeals: their fears, their joys, the stories of where they turned for help, their tips, and most importantly, their triumphs.

Meet babies like:

Samuel Warren, who was born at 1 pound 8 ounces when his mother went into preterm labor.

Bo Smith, the miracle baby born at only 8 inches long after his mother suffered an antibody disorder.

Sara Stromseth, born at 1 pound 15 ounces before modern advances in neonatology and given no chance of living to be the college student she is today.

Ryan White, the ultimate proof that parents should never give up hope.

Living Miracles includes a complete glossary of premature baby medical terms and is organized by the weeks of gestation of the baby at birth, from twenty-three to thirty-six.

Author Biography: Kimberly A. Powell is the department chair of Linguistics and Communications at Luther college in Decorah, Iowa. Kim Wilson is a freelance writer and a certified Iowa Child Advocate. Both are parents of children born prematurely and thriving today. Both reach out to parents of preemies through volunteer work and public speaking engagements.

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Editorial Reviews

Publishers Weekly - Publisher's Weekly
"Prematurity is a world you never know exists unless life takes you there"--that's how one contributor to this volume, B. Lynn Shahan, the mother of twins born weighing just over one pound each, sums up her experience. Shahan is just one of 22 contributors--all parents of infants born under 36 weeks--to Powell and Wilson's collection of short memoirs. Both mothers of former "preemies," the editors have compiled these testimonies in an effort to offer emotional support to other parents who have babies born before term. Technological breakthroughs have made it possible for infants born at 28 weeks of gestation to have close to a 90% chance of survival; still, the early weeks, months and sometimes years in the lives of premature infants may be very difficult. These essays go passionately into the deepest reaches of the experience of parenting a premature baby: Cori Layne Smith, for example, writes about how, forbidden to hold her newborn son for two weeks, she agonized as he went through 10 transfusions for anemia. Terry Tremelhick forthrightly explores the shock, grief and anger that overwhelmed him and his wife after their son was born at 28 weeks. Jayna Sattler writes of her premature son's cerebral palsy, epilepsy and partial blindness. Robin White feels that she and her husband have become stronger people as a result of parenting a premature infant and encourages parents to "never give up hope." This is an informative and helpful anthology for parents and other relatives of premature babies. Photos not seen by PW. (Apr.) Copyright 2000 Cahners Business Information.|
From the Publisher
"Go(es) passionately into the deepest reaches of the experience of parenting a premature baby." —Publishers Weekly

Product Details

St. Martin's Press
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5.78(w) x 8.54(h) x 1.03(d)

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Chapter One


by Susan Adelle Wilshire Warren

Our nine-year journey of infertility actually started almost five years before we were married, in 1982, when I was eighteen years old and a freshman in college. I lived through toxic shock syndrome (TSS) acquired from using the super tampons made in the early 1980s. I had severe peritonitis and nearly died. Months later, after recovering and reenrolling in college, my appendix ruptured. This was misdiagnosed as a TSS relapse. The ruptured appendix stayed in my abdomen for days and wasn't discovered until they scheduled a laparotomy to clean out my bowels and remove my ovaries and uterus. A female surgeon refused to remove my reproductive organs (the head surgeon walked out of surgery at this point), but I was later told that I had little or no chance of having children.

    Fast-forward to 1986. I graduated from college with a biology/ chemistry degree and soon married my wonderful husband, a teacher whom I had met while singing in the church college choir. Within months of our marriage we started trying to conceive by charting basal body temperature and using ovulation prediction kits. After two years without success, we sought the help of infertility medicine. We had the full barrage of tests. The scarring from the abdominal infections had ruined one fallopian tube, and I found out I also had polycystic ovarian syndrome. We started with months of the fertility drug Clomid, then months of Clomid with inseminations. During one of our breaks from the treatment, I conceived by accident. What a surprise! We estimated that I was probably three months along. I began bleeding, and within two weeks I miscarried. This was 1989-90. We recovered, and I continued using Clomid for many more cycles until I became severely hyperstimulated and ruptured a huge ovarian cyst. We were told that I should never try Clomid again. I then used Pergonal injections and attempted still more inseminations.

    By this time it was 1994. After years of being too scared to attempt GIFT (gamete intrafallopian transfer) or IVF (in vitro fertilization), we took the plunge. We did GIFT using lupron, Pergonal, and metrodin injections, and on our first cycle, I conceived! I soon started bleeding and lost the baby. My doctor did another pregnancy test just to confirm, and to our surprise my hormone level was even higher. Joy turned to despair when we discovered that it was an ectopic pregnancy, which resulted in another laparotomy and the destruction of my one remaining fallopian tube.

    After recovering physically and emotionally, IVF was our only option. We did IVF in 1995 using lupron and metrodin. We implanted what we considered a conservative number, four eggs. I was put on bed rest until we found out if I was pregnant. The first pregnancy test showed a level of 1,000 (10 was considered positive), and I was ordered back to bed until the exact number of babies was determined. I soon began bleeding. It was discovered by ultrasound that I had quadruplets but three were dying, while the baby at the fundus was growing well. I bled constantly and was repeatedly hospitalized. We moved in with my parents so that I wouldn't have to walk down the stairs on my many trips to the emergency room and so that somebody would be near to help take care of me. They rented a hospital bed so that I could be more comfortable.

    I had frequent ultrasounds, and at times we couldn't even see the top baby due to the presence of the blood from the other three. I also ruptured an ovarian hemorrhagic cyst and had a 10-centimeter mass behind the uterus. They wanted to do an emergency laparotomy. I was told that saving the one baby was doubtful. I insisted they hold off until the next morning, and by then the mass was miraculously gone.

    Throughout the pregnancy I was on complete bed rest with use of a bedside commode or bedpan (my husband is a saint!). I noticed another type of liquid in the bedpan during the times when the bleeding was slow. It proved to be amniotic fluid. They conjectured that the presence of blood in the uterus weakened the amniotic sac around the top baby, causing it to leak for many weeks. I had ultrasounds done every other day, and we discovered that the amniotic fluid index got lower and lower. The sac finally broke, and I lost what little amniotic fluid remained. My body was trying so hard to miscarry. The labor started after the sac finally ruptured. I received magnesium sulfate and was rushed by ambulance to a major university hospital an hour away, with Steve following in hot pursuit.

    Because we had tried so hard to get and maintain this pregnancy, the doctors broke medical protocol for us. They gave me magnesium sulfate hoping to ward off delivery even though all amniotic fluid was gone. They normally don't do this because the risk of infection for the mother and baby is so high due to the ruptured sac. I also received steroids. We were told that the baby probably would not survive if it was born within the next two weeks. We were able to hold off delivery for only three agonizing days. Samuel Maxwell Warren was born twenty-one weeks after the IVF (twenty-three weeks after the last menstrual period) in October 1995. We named him Samuel because it means "I have asked God for you" and because, like Hannah, Samuel's mother in the Old Testament, I had previously been unable to conceive.

Early Days, Decisions, and Diagnoses

    The decision to use drastic measures to save a much-loved and much-wanted child is probably one of the most difficult decisions anyone could ever make. The doctors told us that they normally wouldn't even try to save a baby so premature, but due to our history of infertility, they would try if we so wished and if it looked as if the baby had a fighting chance. My husband and I agonized over this decision. We desperately wanted this baby we had been trying so hard to have, but we didn't want him imprisioned in a body that wasn't able to function. This is what we told the doctors; it was a wait-and-see decision. When the labor was unstoppable, I delivered my son in a room that was filled with medical personnel from the NICU. I remember the room being very quiet even though there were so many people there. There was no joy or anticipation on anyone's face. My husband and I didn't even get to see our son; he was immediately whisked away, lost from view by the large adult bodies of those trying to save his life.

    The entire NICU team was amazed at how big Samuel was. He had always measured large on his ultrasounds, often one or two weeks larger than he really was, thanks to his genes. There was no doubt about his exact age, however, since we knew the precise minute he was conceived in a petri dish! There are many things I love about Steve, but I was never so glad that I married my six-foot-four husband than when they exclaimed about my preemie, "He's huge! He's huge!" Sammy was 1 pound and 8 ounces and 11 3/4 inches long. Judged in weeks, he should have been less than a pound. Sammy's Apgar scores were remarkably high (4 and 6), which also surprised everyone. This news was very encouraging and removed all doubt in our minds and the minds of the doctors about saving our baby. We cannot even begin to think of what it would have been like had the original news not been so optimistic.

    The positive news and elation soon ended. By the afternoon the doctors were telling us that they didn't expect Sammy to live through the day. They told us that they call the first twenty-four hours after a premature birth the "honeymoon" since the baby remains relatively stable from being inside the mother. Our honeymoon lasted only about five hours; Sammy crashed. The next few months were critical, and he fought for every minute of life. I am still amazed at how fragile and yet strong he was (and still is).

   Samuel developed pulmonary interstitial emphysema (PIE), severe bronchopulmonary dysplasia (BPD), pneumothorax (collapsed lung), which required a chest tube, pulmonary edema, two grade II intraventricular hemorrhages (IVH), transient patent ductus arteriosus (PDA), severe anemia and hypoalbuminemia, several severe candidial sepses, which caused his platelets to crash from 300,000 to 6,000, and an inguinal hernia. He also received multiple transfusions of blood and platelets, and a lumbar puncture for suspected meningitis. He was on a high-frequency ventilator and then a traditional ventilator for almost two and a half months. He had terrible bradycardia (dramatic decrease in heartbeat) and apnea (failure to breathe) episodes, often every five minutes. He received IV nutrition called TPN (total parenteral nutrition) for weeks until he was able to tolerate feedings of breast milk by gavage. Once he was off the ventilator we were transferred by ambulance to our local regional medical center for a month-long stay.

    Once Sammy was at the medical center, I was able to meet with a wonderful lactation consultant. She let me take Sammy out of the nursery into a private room and helped my husband and me learn how to position Sammy, since he was very small and weak. She would make sure I had plenty of the four p's: privacy, pillows, patience, and plenty of towels! Once I took Sam home, she was available to me by phone and would come out once a week to weigh Sammy and help with any problems.

    I was very glad that I continued pumping. We didn't find out until five months after his birth that Sammy had an immunodeficiency called hypogammaglobulinemia, which resulted from his severe prematurity. We were so glad that we had been able to give him the immune-rich breast milk even before we found out about his serious immunodeficiency. We both knew how important it was that Sammy continue to receive the immunity from the breast milk, so that kept us going for those twenty-one months. I was able to transition Sammy to nursing, but then he kept getting too sick to nurse and had to be rehospitalized. Finally, after one lengthy hospitalization, he refused to go back on the breast, so I just made the commitment to keep pumping. We are convinced that the breast milk played a key role in keeping him alive and preventing him from getting necrotizing enterocolitis (NEC), a potentially deadly condition in which normally harmless bacteria attack the intestinal wall. This was a powerful motivation for my continuing to pump for so long. The other reason was the incredible support of my husband. From the very beginning he was there with me. We learned together. He never once made me feel weird when I was sitting attached to this machine countless times during the day. He knew that it was something only I could do. He could see what a tiring job it was, so he became my pumping partner and did the round-the-clock schedule with me.


    Samuel came home several weeks before his due date, weighing 3 1/2 pounds. He was on continuous-flow oxygen through a nasal cannula. He was hooked up to a monitor that would alarm for any apnea, bradycardia, or tachycardia. He was relatively stable for the first few weeks after coming home but soon became infected with disseminated candidiasis. It started out as diaper rash, but within days it covered the majority of his body and he developed thrush. It spread to the point where it was hard to remember what he looked like without the sores. We were convinced he was near death. He was in so much pain and looked like someone had poured boiling water on him, yet the doctors refused to see him for another office visit for "just" diaper rash and prescribed only very weak topical antifungal medications. I kept telling the doctor that I was sure these sores were an external manifestation of an internal problem. I begged her to hospitalize my son or at least give me a referral for the university hospital where he had been successfully treated before. She finally put Sammy in the local regional center, most probably to get me off her back. This hospital did not have a pediatric ward. They didn't have central A/B monitors so that the nursing station would know when he was bradying. My husband and I did not leave his side for a second because he kept bradying and desaturating. The hospital didn't even have an oxygen flow regulator to measure pediatric levels of oxygen. His face was too broken down to wear the nasal cannula, and it took our insistence and most of the day for them to rig up some sort of an oxygen tent for Sammy.


Excerpted from LIVING MIRACLES by . Copyright © 2000 by Kimberly A. Powell and Kim Wilson. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

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