Parenting Your Premature Baby and Child: The Emotional Journey

Parenting Your Premature Baby and Child: The Emotional Journey

Parenting Your Premature Baby and Child: The Emotional Journey

Parenting Your Premature Baby and Child: The Emotional Journey

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Overview

The premature birth of a baby is both a medical and family crisis. Within the pages of this comprehensive guide, parents will find compassionate support, practical suggestions for coping and adjusting, and advice that empowers them to handle an array of emotions.

Product Details

ISBN-13: 9781555918781
Publisher: Fulcrum Publishing
Publication date: 10/19/2016
Sold by: Barnes & Noble
Format: eBook
Pages: 928
File size: 2 MB

About the Author

Deborah L. Davis, Ph.D. is a developmental psychologist and writer who specializes in the emotional aspects of coping with crisis during pregnancy and infancy, and medical ethics and decision-making during pregnancy and in the NICU. She is the author of several books for bereaved parents and parents of premature babies and has written many articles for parents and professionals. Mara Tesler Stein, Psy.D. is a clinical psychologist in private practice. She lives in Chicago. Both authors specialize in the emotional aspects of crisis around pregnancy and parenting, parent education, child development, and family-centered care.

Read an Excerpt

Parenting Your Premature Baby and Child

The Emotional Journey


By Deborah L. Davis, Mara Tesler

Fulcrum Publishing

Copyright © 2004 Deborah L. Davis, Ph.D., and Mara Tesler Stein, Psy.D.
All rights reserved.
ISBN: 978-1-55591-878-1



CHAPTER 1

An Unexpected Journey

When you find out you are pregnant, you are anticipating so much more than just a baby. Along with your hopes for a healthy baby, you may have many optimistic expectations for this pregnancy, the labor and delivery, and the newborn period. You may start forming a picture of the expanded family you're creating and the future you're building. Indeed, you imagine being a certain kind of parent to a certain kind of baby.


When your pregnancy ends prematurely, many of your hopes and expectations unravel. When your newborn is confined to a neonatal intensive care unit (NICU), you miss many of the early parenting experiences you were anticipating. Even after you bring your baby home, when your infant is so tiny and vulnerable, the experience may not match the one you had envisioned. Because your expectations about pregnancy, birth, and homecoming have been violated, having a premature baby can feel bewildering, frustrating, saddening, even devastating. As your baby grows, you may continue to be affected by the premature birth, whether or not your child is.

When your premature baby is born, you're not just experiencing a singular event, you're embarking on a journey. Along the way, you relinquish old dreams, adjust to what is, and dream new dreams. This process of grief and adjustment includes coping with your feelings, developing your parental identity, and managing your relationships. But this journey of parenting your preemie is a journey you probably didn't even know existed, one through uncharted territory. You may feel entirely lost and unsure.

This chapter establishes a base camp, offering you an orientation, a map, and a compass to help you make your way along your journey. First, we offer you the orientation that your baby's premature birth is a violation of your heartfelt expectations. This critical understanding gives you a context in which your emotional reactions can make sense to you, and then you can begin to grieve, cope, and adjust. Although this orientation shows you your pain, it also starts you on a journey of healing and growth.

Second, we'll provide a map of the main tasks ahead of you: coping with feelings, developing your parental identity, and managing your relationships. These tasks have always been a part of your life, but your baby's prematurity puts your emotional, parenting, and social abilities to the test. Because each parent's journey is unique, this map cannot show you precisely where you need to go or how to get there. But it can be your guide, showing you the milestones, pitfalls, and pleasures you may encounter, and offering suggestions and support as you determine your own speed, direction, transportation, and the paths you take.

Finally, since you are responsible for your own navigation, we offer you a compass to guide you on your journey and to reorient you when you're feeling lost. The needle of this compass points you toward the affirmation that parenting a premature baby is a journey that's just as legitimate, worthy, and rewarding as parenting a full-term baby, even though it's different from the experience you were counting on. Becoming a different kind of parent to a different kind of child is full of unique challenges, certainly, but also full of unique joys and opportunities for your own growth and development, as a parent and as a person.

We offer you this orientation, map, and compass so that you can go forth with faith in your ability to prevail, hope for the future, and love in your heart for your child.


Orientation

Hopes and Expectations

Being pregnant was a dream come true! We had tried for almost five years, so that positive pregnancy test was the answer to my prayers. I was thrilled beyond belief. I wanted that baby so desperately! I had every hope and dream imaginable for an idyllic pregnancy, birth, and baby. I had waited so long that everything was bound to be perfect! I immediately took on the role of "mother-to-be" — I ate well, slept, and took good care of myself and this baby of mine. — Sara

I was very happy. ... I was thrilled at the prospect of getting a big belly and having the baby kick and push at my stomach. I wanted to remember all the feelings. I was never sick. I had a great time while I was pregnant. ... I was enjoying watching my body change. — Kristina


When you are pregnant, it is natural for you to revel in the wonder and anticipation of it all. It is also natural for you to count on having all those months before the due date to prepare both psychologically and physically. If this is your first pregnancy, you expect to have time to adjust to the idea that you are about to become a parent. If you've been down this road before, you may appreciate the idea of having nine months to move through the normal mixed feelings about bringing another child into the family. Whatever your situation, you plan to finish your nesting projects, to make a place for your baby to come home to, and to be ready and welcoming when the time comes. With all of these plans and preparations, you have an enormous emotional investment in carrying the pregnancy to term.

You may also have hopes and expectations for the delivery. You may hope to be active in the birthing process, to be able to make choices that you believe will give your baby and your relationship the best possible start. You may envision gently welcoming your baby into the world. You imagine a newborn who is cute, tranquil, and fits nicely into your arms. You picture nuzzling and nursing your little one. You naturally anticipate bringing your baby home after a day or so, to the congratulations of friends and family. Picturing your healthy, robust infant, you see a bright future.

These visions are not just enjoyable daydreams, but they are also important psychological preparation for your future as a parent. Having certain expectations lets you make plans and feel some measure of control. Positive assumptions give you confidence and hope. You invest in your future as you imagine it.

I read everything I could get my hands on about pregnancy. My husband, Chris, and I wanted a natural childbirth. We practiced the Bradley method every night together. He was a wonderful coach, and I envisioned him there with me as we welcomed our new baby into the world without drugs or machines. — Rebekah

When I found out Cyndy was pregnant with twin boys, I had dreams of big, strapping football players — the first twins in the NFL. I dreamed of the things we would do together, running, biking, watching the games on Sundays. — Rich

During the pregnancy, I was not afraid of anything — I just took for granted that everything always goes smoothly. ... It never once occurred to me that things do go wrong. — Jodi


Most expectant parents have faith that their pregnancy is healthy and will go to term. They don't seriously contemplate other possibilities. Even if you feel a sense of uneasiness or if you are identified as being "high risk," it is hard to believe that bad things could really happen to you. You still expect relatively smooth sailing. But as events begin to unfold in unexpected ways, those assumptions start dissolving. You are confronted with the possibility that your future will be different from the one you had imagined.

I had wanted a baby for many years, and now I was finally going to have one. I imagined "she" would be perfect. I was exercising, eating well, and had already cut out all caffeine and alcohol. Still, because I was a bit on the old side, I waited to tell family and friends until I was through my first trimester. I felt like things were just too wonderful — too good to be true. — Rebekah


When the Unexpected Happens

Six weeks into my pregnancy I started to bleed. ... I was devastated. Throughout the next few weeks my doctors' appointments were not the happy events I had hoped for and dreamed of in a pregnancy. — Lauren

I was in a hospital bed with an IV in one hand, a blood pressure cuff on the other arm, and a fetal monitor around my stomach. The TV was playing ESPN's SportsCenter, and Joe was in a chair next to me. It was surreal — how did we get from one place to another, an incredible high to this frightening low? — Mindy

We'd seen the NICU on a tour when I was first pregnant, and I had thought it was for the very sick, deformed children, babies that weren't going to live. I told myself I would never be there. I'm going to have normal, healthy children. Why wouldn't I? Everybody does — except those people, those poor, poor people. So when I found myself in the NICU, I just couldn't believe it. — Vickie

The day we left the hospital without the baby, my husband and I sat on our sofa and sobbed all night long. We felt empty and exhausted. We realized we had been in shock and still were. I was feeling great loss. I rely heavily on tradition. I'm a planner. This was not how it was supposed to be, not how I had planned it. — Laura


Whether problems develop in the first, second, or third trimester of your pregnancy, your expectations for a blissful pregnancy are shaken. But even though you are shocked and distressed, you may still hold out hope for a timely, gentle delivery. When preterm birth is imminent, your hopes and wishes for the delivery crumble, but you may still hold onto your fantasies of a healthy baby. Then, when you see your baby, another layer of expectations tumbles down. When a baby is born too soon, neither the baby nor the parents are ready.

After we found out we were pregnant, the baby came five months later. ... Financially, we were unprepared. Emotionally, you can never be prepared. — Lauren

Seeing a premature baby is so very different from anything you could ever imagine! The things you have come to consider normal just aren't there! There is no fat at all on these little peanuts. Their ears are like pieces of paper, moldable to any shape, depending on how they were positioned. Their heads look monstrous in comparison to that teeny body. Could anyone possibly see their newborn baby looking like this and not be shocked, scared, and saddened? — Sara

I focused more on their baby-ness than on their medical condition. They were little and helpless, and mine. But I also had a sense that this was the beginning of a dramatic step that I couldn't undo and that would change our lives forever. — Dwight


When your tiny baby lies sick and struggling in an intensive care nursery, you can feel a shift in your expectations about parenthood and what will be asked of you as a parent. Instead of feeling well equipped to respond to your baby's needs, you feel scared, lost, and confused. As you peer at your infant, overwhelmed by the tubes, wires, and buzzing machinery, you feel helpless in the face of medical technology. You compare this surreal scene with your fantasies about holding and nursing your newborn, taking your baby home, and showing him or her off to admiring friends and relatives. You wonder how to parent this small creature; how to best stroke your baby's soft, fragile skin; how to comfort and come to know your tiny child. You wonder when you will be able to take your baby out of the hospital and somehow find your way back to the path you had planned.

I knew she had just been removed from my body, but it still seemed unreal to me. While I was in recovery, my husband saw the baby in the NICU and returned crying. My parents saw her and returned crying. I remember feeling afraid to go to the NICU. When I finally went, my reaction was still one of unreality. Of course, she did not look at all like the baby I had envisioned. My dreams met reality that night in the NICU, and I just could not reconcile the two. — Renee

It takes away the fairy tale. You know — you have a baby, everyone's happy, you pass out cigars, and the baby goes home and goes to sleep and you just give them your life. — Charlie


There is another layer of expectation that is challenged when your baby is born too early — expectations about modern medicine. At first, your faith in medical treatments and technology can lead you to assume that your baby will recover easily and come home very soon. In labor, Suzanne admits, "I thought, 'Oh, okay.' I was under the impression that you had a baby that was small, it would be in the hospital for a while, and everything would be fine. I was very naive, very uninformed."

You may believe that everything will be fine because, many times, no one is saying otherwise. Even if you know your baby is critically ill, it is hard to believe that modern medicine might not come through for your child.

When they called at 5:00 a.m. and said Travis was getting sicker, I figured I'd get there, they'd work on him a little bit, and he'd be back to normal, you know, just like on the TV shows. I didn't know what was going on. — Charlie


As you learn more about the limits of modern medicine, you begin to realize that bad things can happen to newborns. Suddenly, illness, disability, and death challenge your assumptions about the beginning of life. Even if your baby stabilizes quickly, his or her need for intensive care is incompatible with your ideas of how newborns are supposed to be. If your baby experiences complications or doesn't fully recover, or if your baby dies, your trust in the wonders of modern medicine may be shattered.

Finally, premature birth confronts your expectations about how life is supposed to work. You may have held onto the belief that "doing all the right things" during pregnancy would guarantee a healthy baby. You may have believed that nothing bad happens to good people, and especially to their babies. You also may have held onto the hope that fervent prayer or adherence to ritual or superstition could guard you and your baby against harm. Whatever you did or believed to protect yourself, you are likely to feel alone and betrayed when crisis strikes. Most of all, you may feel cheated out of experiencing a marvel of nature — the uncomplicated birth of a healthy baby.

Things aren't supposed to happen like this. One of the tougher initial feelings was in the recovery room after the C-section. My wife was still under the anesthesia. There were four couples in the room, and the other three had babies. It was a very separating and isolating feeling. I'll never forget it. — Preston


As all of these sets of expectations are shattered, what you face is entirely different from what you imagined. The changes in your relationships, the emotions you face, your shifting identity, needs, choices, and priorities — your entire situation is transformed and nothing feels right. Your world doesn't make sense anymore, and you may worry that it never will again. It's difficult to imagine that you will ever adjust — and yet, with time and experience, eventually you will.

I think it matters a lot "where you are" in this journey. When I was in the NICU, my skin was so thin and raw that I don't really even know how I functioned. After we came home, I was better, but still, if I had to use one word, I would say I was scared. And now, I still have my moments, but after two years, I would say I am really just coming out of a fog. — Lara


In the early weeks, as you struggle to make sense of what has happened, the flood of feelings makes it necessary to cling to old, familiar dreams. As you become more comfortable with your baby, you gradually grieve for what might have been and learn to cope with what is. Over time, you come to accept and even appreciate the reality. Eventually, you can find the treasure in adversity.

As time passes, you realize that watching your premature baby grow brings some unexpected gifts. The joy of a smile, the appreciation of even small developmental steps, or respect for your child's individual pace makes parenting a preemie a rich experience. No matter what, you will view your child's growth and development through different eyes and with a mixture of intense, conflicting feelings. You may feel a combination of hopes and fears, disappointment, relief, and joy. You will notice that your perspective has shifted. You take nothing for granted.

I think I appreciate what I have so much more than most parents do. For example, Josh and Evan this week for the first time asked "what" and "how" questions. I literally almost started to cry. Most parents don't even notice when their kids start to ask questions. — Stephie


You become wiser, too, in that you begin to realize that nothing is guaranteed. And with this growing awareness, you turn to look at your child. Each step in development, each illness, each decision you make for your growing child's welfare is colored with the knowledge that you will always do everything you can for your child, but that there are things you cannot know and cannot control.

When you have a premature baby, you must adjust your expectations. You will gradually modify some of your goals and beliefs, and redefine what it means to be a parent to this child. Premature birth sets you on a different path.


(Continues...)

Excerpted from Parenting Your Premature Baby and Child by Deborah L. Davis, Mara Tesler. Copyright © 2004 Deborah L. Davis, Ph.D., and Mara Tesler Stein, Psy.D.. Excerpted by permission of Fulcrum Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Table of Contents

Contents

Acknowledgments,
Introduction,
CHAPTER ONE An Unexpected Journey,
CHAPTER TWO Grief and Adjustment,
CHAPTER THREE Moving through Painful Emotions,
CHAPTER FOUR Especially for Fathers,
CHAPTER FIVE Delivering Too Early,
CHAPTER SIX Physical Recovery,
CHAPTER SEVEN Acclimating to the NICU,
CHAPTER EIGHT Becoming a Parent in the NICU,
CHAPTER NINE Developing a Relationship with Your Baby in the NICU,
CHAPTER TEN The Roller-Coaster NICU Experience,
CHAPTER ELEVEN When a Baby Dies,
CHAPTER TWELVE Discharge and Homecoming,
CHAPTER THIRTEEN Settling in at Home,
CHAPTER FOURTEEN Meeting Caregiving Challenges at Home,
CHAPTER FIFTEEN Becoming the Kind of Parent You Want to Be,
CHAPTER SIXTEEN Supporting Your Child's Development,
CHAPTER SEVENTEEN Watching Your Child Grow,
CHAPTER EIGHTEEN Discovering Disabilities,
CHAPTER NINETEEN Your Family,
CHAPTER TWENTY Your Support Network and the Outside World,
CHAPTER TWENTY-ONE Considering Another Pregnancy,
CHAPTER TWENTY-TWO Coping during a Post-Preemie Pregnancy,
CHAPTER TWENTY-THREE Healing and Moving On,
Appendices,
A: A Note to Caregivers,
B: A Note to Friends and Relatives,
C: Resources,
D: Neonatal Guidelines for Parents and Health Care Professionals from the Colorado Collective for Medical Decisions,

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