Intensive Parenting: Surviving the Emotional Journey through the NICU

Intensive Parenting: Surviving the Emotional Journey through the NICU

Intensive Parenting: Surviving the Emotional Journey through the NICU

Intensive Parenting: Surviving the Emotional Journey through the NICU

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Overview

Parenthood transforms you. Even before this crisis, you may have experienced a wide range of feelings triggered by pregnancy, birth, and welcoming a new baby. The NICU experience challenges your emotional coping, your developing parental identity, your relationship skills, and your ability to adjust.

Intensive Parenting explores the emotions of parenting in the neonatal intensive care unit, from in-hospital through issues and concerns after the child is home. Deboral L. Davis and Mara Tesler Stein describe and affirm the wide range of experiences and emotional reactions that occur in the NICU and offer strategies for parents coping with their baby's condition and hospitalization.

Deborah L. Davis, PhD, is a developmental psychologist and writer who is the author of several books that support grieving parents including Empty Cradle, Broken Heart: Surviving the Death of Your Baby and Loving and Letting Go.

Mara Tesler Stein, PsyD, is a clinical psychologist. She consults to healthcare providers and hospitals, guiding their efforts to improve the level of psychological support and care to families in Labor and Delivery and in the NICU. She specializes in the emotional aspects of coping with crisis around pregnancy and parenting.


Product Details

ISBN-13: 9781555917449
Publisher: Fulcrum Publishing
Publication date: 11/01/2012
Pages: 320
Product dimensions: 6.10(w) x 9.30(h) x 0.90(d)

About the Author

Deborah L. Davis, Ph.d., is a developmental psychologist and writer who is the author of several books that support grieving parents including Empty Cradle, Broken Heart: Surviving the Death of Your Baby and Loving and Letting Go.

Mara Tesler Stein, Psy.D., is a clinical psychologist. She consults to health care providers and hospitals, guiding their efforts to improve the level of psychological support and care to families in Labor and Delivery and in the NCIU. She specializes in the emotional aspects of coping with crisis around pregnancy and parenting.

Read an Excerpt

Intensive Parenting

Surviving the Emotional Journey Through the NICU


By Deborah L. Davis, Mara Tesler Stein

Fulcrum Publishing

Copyright © 2013 Deborah L. Davis and Mara Tesler Stein
All rights reserved.
ISBN: 978-1-55591-768-5


CHAPTER 1

An Unexpected Journey


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


When you find out you are pregnant, you are anticipating so much more than just a baby. You may hold optimistic expectations for a smooth pregnancy, an uncomplicated birth, a healthy baby, and an easy adjustment with your newborn. You may start forming a picture of the expanded family you're creating and the future you're building. You imagine being a certain kind of parent to a certain kind of baby.

But now your newborn lies in the Neonatal Intensive Care Unit (NICU), and many of your hopes and expectations come crashing down. Even if your baby stabilizes quickly, his or her need for intensive care is incompatible with your ideas of how and where newborns are meant to be.

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


As you peer at your infant surrounded by tubes, wires, and buzzing machinery, you may wonder how to parent this small creature; how to best stroke your baby's soft, perhaps fragile skin; how to comfort and come to know your child. You may 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.

But you're not experiencing a mere misstep, you're embarking on a new journey through uncharted territory. You may feel lost, terrified, bereft, and unsure. How will you find your way? How can you relinquish old dreams, adjust to what is, and dream new dreams?

When expectations are shattered, nothing feels right. It's difficult to imagine that you will ever adjust or recover your happiness. This is a jarring, harrowing experience, and with dread you may sense that there's no turning back.

Finally, we got the call saying we could go up and see our son. I was put in a wheelchair, and we entered the NICU, the artificial womb that we all would live in for a while. — Laurie

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


Hopes and Expectations

I had always known I wanted to be a mom. I wanted a peaceful pregnancy where I could enjoy all the pregnancy symptoms and watch my belly grow. I wanted to bond with my child as soon as he was born. We dreamed of having this little boy who would become our world. A little one to make our family whole. — Corin


During pregnancy, it is natural for you to revel in the wonder and anticipation of it all. You may envision gently welcoming your baby into the world. You may dream of nuzzling and nursing your little one, and you imagine a newborn who is cute, tranquil, and fits nicely into your arms. 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.

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


These visions are not just enjoyable daydreams. They are an 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

You may also have expectations about how life is supposed to work, such as doing all the right things during pregnancy will guarantee a healthy baby. You may believe that nothing bad happens to good people, and especially to their babies. Even if you feel a sense of uneasiness or if your pregnancy is identified as high risk, it may be hard to believe that bad things could really happen to you.

But as events begin to unfold in unexpected ways, your anticipated path starts changing. Whether your baby receives a firm diagnosis during the pregnancy, you launch into preterm labor or experience other problems, or your baby is unexpectedly whisked away from you after birth, you are confronted with the possibility that your future will be different from the one you had imagined.


When the Unexpected Happens

In many cases, problems are detected during pregnancy. If there are maternal complications or if the baby has a medical condition, you may feel stunned, distant, confused, or inept. You may struggle to comprehend what the doctors and nurses are telling you. With your baby tucked away inside the womb, you may not comprehend the magnitude of the problem. At first, it's tempting to tell yourself that the warning signs are not ominous or that after some monitoring you'll be sent on your way.


During a routine Level II Fetal Ultrasound, my doctor looked at us and said, "Mr. and Mrs. ----, I found an anomaly with the fetus." I felt like the rug had been pulled out from under my feet. Barry and I were being told that there was a good possibility our baby had a fatal genetic issue and, even if she didn't we were looking at a huge undertaking following delivery. To say that I felt like crying would be an understatement. — Dina

I'll never forget that first night in the hospital, being poked by those interns. I couldn't sleep at all. I kept thinking it was just a mistake and that when the "real" doctors came to examine me, they would set it all straight and send me home. But, of course, that didn't happen. — Rebekah

There I was, flat on my backside. How was I going to make it through the next three months? Of course, I was sure I'd carry the baby at least close to term. I had no sense of urgency, as I should have had. I still feel guilty about that. — Cindy

For me, it was the first time in my life that I was living completely in the moment. I was too terrified to think of what would happen next, so I just learned to be completely grateful for each minute I stayed pregnant. — Susan B.


If you have weeks or months of monitoring or bed rest, you may walk that fine line between hope and despair or vacillate between them. You may deny the possibilities or try to protect yourself from the worst by withdrawing emotionally from this baby. Detachment mixed with terrible fear make for a bewildering roller coaster of emotions during the rest of your pregnancy. It can be a very difficult time.


There were so many emotional ups and downs. That was perhaps the hardest thing. One day they talk about sending me home, and the next there's a fetal monitor strapped around my belly indefinitely. — Rebekah

I had been very excited about the baby and had begun preparing for the arrival from the start of this pregnancy. Now, I wouldn't let myself get my hopes up. During the two months between the first hospitalization and the delivery, I imagined frequently what it would be like for the pregnancy to end without a baby. — Shaina

I began preparing myself, subconsciously, for what might be the death of both my babies. I guess I thought that if I detached myself from my feelings for them, it wouldn't hurt so much if I lost them. — Sara

All I could think of was I just want this to be over. So I had two sides of the coin — the side where I'm fighting for the life of this baby and the other side where I just wanted to give up. — Vickie

When the doctors finally prepped me for my cesarean, I felt some relief. My five weeks in the hospital had been full of close calls, and I was exhausted — emotionally and physically. I wanted it all to be over. — Rebekah


Sometimes complications lead to imminent delivery and the shock of emergency birth. As a father, you may feel removed and unlike yourself in the midst of this crisis. As a mother, you may be bereft and filled with dread.

In forty-five minutes we went from "We're having twins. Isn't that great?" to a shocked, crying, sad, and frightened "We're having them now — we're going to the hospital." So here we are, scared. We have no idea. We know squat about what's going on. I'm in my own world, and Debbie's in her world. — Mitch

When I called the doctor that morning at 2:00 am, he said to bring Lauren to Labor and Delivery. I was so upset driving the twenty miles to the hospital that I could hardly keep the car on the road trying to see through my tears. When I got to the hospital, I drove up and down the street three times looking for a Delivery sign. I'm lucky that they didn't have a Delivery sign, or I would have left Lauren at an empty loading dock while I went to park the car. After I had circled the hospital one more time, Lauren had sense enough to tell me to just go to the Emergency Room and they would get her up to Labor and Delivery on the third floor. Actually, I'm glad that the doctor did not tell me on the phone that Labor and Delivery was on the third floor, or I might have tried to drive my car up the stairs. — Michael

I tie on my papery surgical mask and wonder how life is about to change. Wondering how I'm going to screw up this kid. Wondering if I'll get the chance. Wondering. — Jeff

The first feeling when the doctor said that I was going to have a C-section right away was No — I'm not ready! I wanted to be pregnant for a couple more weeks! Then I was afraid to face my son, to really see how he was. ... I wasn't ready to face the truth if it wasn't a happy one. — Inkan

The whole time they were prepping me and doing the C-section I was crying. They told me to stay calm — like that was possible! I just kept thinking, If I lose my baby, I will die. — Dusti

Neither boy cried. There were so many people in the delivery room — doctors, neonatologists, specialists — it was chaotic. I felt lost and that my body had failed me again. — Jody


When the baby is expected to do poorly outside the womb, the birth is an intense and watchful period. With the NICU team present, everyone holds a collective breath, hoping for the best and wondering how the baby will respond to being born. Tracy remembers, "The silence that followed his birth was the loudest thing I have ever heard."

When I saw [the babies] for the first time, it was a relief that the trials and tribulations of trying to hold on to the pregnancy were over. Now we had new trials and tribulations to work on, and that was Riley and Banning. — Pam


If your pregnancy was uneventful, the unveiling of your baby's condition after birth may be gradual, or it may be swift and shocking. Either way, it can feel awful to realize that you've taken a terrible detour.

The labor and delivery went very smoothly. I remember it being a very beautiful experience and being so excited to meet my little boy. When he was born he let out one cry, and she held him up for us to get a picture. After a couple of minutes, she called in some doctors, and they took him away. I was told he was having signs of distress and needed "a little help to get started." Since he was my first and I didn't know what was normal, I was still oblivious that anything was seriously wrong for a while. After about an hour of not being able to see or get an update on Gabe, I began to panic. A doctor finally came in to tell me the diagnosis and that he was very sick and needed to be transferred to a larger hospital. Almost two hours after he was born, they brought him in a transport incubator covered in wires and tubes. I was able to touch his hand briefly and say good-bye as they quickly whisked him away to transport to another hospital. It was heartbreaking, scary, and confusing. I had no idea what to expect or what was happening. — Corin

After birth, Kit did not do well on her Apgar test and almost immediately her little chest started caving in due to the stress of trying to breathe. She was like a wet noodle, according to the nurse, and after her initial cry would only whimper. She also turned very pale very quickly. No one got to hold her but me and it was very brief, maybe a minute, and I had to keep an oxygen mask up to her face. The boys and my husband just got to look at her.

It was magical, then scary — the fear really hit me because I could see she was not breathing well at all and the look on the nurse's face was that of worry. — Jennifer E.

This was not at all what I imagined our birthing experience would be. Jeff and I had signed up for parenting, breast-feeding, and childbirth classes. None had started. We were not prepared. I really felt I was apart from my emotions and this experience. — Sandy


Whether you had advanced warning or not, as you watch the doctors and nurses work on your newborn, you may anxiously look for signs of survival and spunk from your baby. For many parents, hearing the baby cry is a powerfully welcome and reassuring sound. As Sharon remembers, "I was afraid that he would die, but once I heard his little squeak of a cry, I knew he had the will to survive." Encouraged, you may be able to rejoice in the moment.

There were so many people in the room, it was like a minyan — that means ten adult male Jews, enough to have full prayers. There was a neonatal team for each kid. An awful lot of people. And then Daniel was born, and he was cute — I remember seeing his little hand — and he was whisked away immediately and intubated, and that was the last I saw of him for a while. After some manipulating, Shayna was born too, and it was a little exciting — there was actually some happiness. We'd just became the parents of twins, and for a little bit, it was kind of okay. — Mitch


You may also look for signals from the medical team. They might bring your baby to you for a peek and maybe a kiss before the move to the NICU. Dare you touch such a fragile infant? Indeed, some parents fear that they are being asked to say good-bye to a baby who may die.

After three pushes he was out, and he didn't look good. He was purple. When they went to clean his nose and his throat, there was so much blood, it was scary. ... I was afraid. My husband lost control. He had to leave the operating room, and I could hear him in the hallway, punching the walls. And the baby didn't cry. They were doing CPR on him, resuscitating him. And finally, the neonatal resident went out in the hall and got Tom, and at that point I had just about convinced myself that the baby was dead. And they brought Tom back and said, "Here, you can see your son." And Tom looked down and said, "Oh, wow, he's pink, he's pink, he's pink." After being born so blue and purple and scary, he was pink, and he was okay. Then the nurse brought him over to me and said, "Here, you can hold him." And I held him for just a little minute, kissed him, told him I loved him, and she took him back and he was on his way. But I wasn't sure why she had handed me him and not my daughter. I was convinced that they thought he wouldn't make it and wanted me to be able to see him. After all this time and a happy outcome, I'm sitting here bawling about it. — Pam

The nurse brought Ryan over, hurriedly, telling me to give my son a kiss. I took this to mean, "You may never have another chance. Better kiss him now," and I was resistant. I brushed the top of his little head and said I'd see him soon. They brought Elizabeth over and put her head next to mine for a picture. I felt removed still, and I wavered between How dare you think my baby will die and I can't love them, they might die. — Sara

I remember wanting so bad to hold her because I knew they were going to take her away from me. But I was unnaturally calm. — Jennifer E.

I don't think anything in the world can prepare you for the sight of your premature baby. I only saw her for a moment before she was whisked away to the NICU. She did not appear in any way to be human. — Renee


Shocked and distressed, some parents still hold out hope for a healthy baby or speedy recovery. But when you see your baby truly struggling, another layer of expectations tumbles down.


(Continues...)

Excerpted from Intensive Parenting by Deborah L. Davis, Mara Tesler Stein. Copyright © 2013 Deborah L. Davis and Mara Tesler Stein. 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

Preface xvii

How to Use This Book xix

1 An Unexpected Journey 1

Hopes and Expectations 2

When the Unexpected Happens 3

A Different Path 9

Emotional Coping 10

Developing Your Parental Identity 10

Managing Your Relationships 11

Adjustment and Healing 11

2 Separation 15

Separation from Your Baby 17

Feeling Detached from Your Baby 22

Disorientation 23

Isolation and Exhaustion 24

Denial 25

A Sense of Loss 26

Separation 27

3 The Emotional Landscape 31

A Mix of Emotions 32

A Mosaic of Losses 36

The Grieving Process 39

Common Feelings of Grief 41

Shock 42

Sadness 42

Fear 43

Yearning 44

Guilt 44

Failure 46

Powerlessness 48

Anger 49

Couples and Grieving 52

Multiple Birth and Multiple Realities 56

4 Coping and Adjustment 59

Meeting Your Physical Needs 60

Recovery from Childbirth and Any Complications 60

Postpartum Adjustment 61

Accepting Assistance 63

Getting Close to Your Baby 64

Letting Your Grief Flow 65

Practicing Reframing and Mindful Acceptance 67

Addressing the Emotional Trauma 70

Dealing with Burdensome Emotions 72

Telling Your Story 76

Seeking Emotional Support outside the NICU 77

Navigating with Your Partner 80

Supporting Your Other Children 82

Seeking Professional Counseling 86

Finding Solace in Your Beliefs 89

Deciding to Move Forward 91

Looking for the Treasure in Adversity 93

5 Acclimating to the NICU 97

Modern NICU Practice 99

Relationship-Centered Care 101

Developmentally Supportive Care 103

Coping with the Technology-Centered NICU 105

Joining Your Baby's Care Team 107

Getting to Know Your Baby's Medical Practitioners 109

Valuing Your Own Contributions to Caregiving 112

Valuing the Staff's Contributions-and Knowing They Value Yours 113

Being Informed 115

Information-Gathering Tips 118

Overcoming Communication Barriers 119

Advocating for Your Baby 123

Being There for Medical Procedures 125

Making Medical Decisions 126

Dealing with Regrets 130

6 Feeling Like a Parent 133

Developing Your Parental Identity 136

Closing the Gap 141

Finding Privacy 143

Dealing with Fears 144

Negotiating Medical Barriers 146

Building Confidence 149

Tips for Building Confidence 152

Parenting from a Distance 155

Making the Most of Your Presence 156

Making the Most of Your Absences 157

Baby Diaries 158

Recognizing the Importance of Your Presence 159

Spreading Yourself among Multiple Babies 161

Managing Your Regrets 162

Feeling More Like a Parent 164

7 Relating to Your Baby 169

Bonding 170

Bonding Occurs Over Time 172

Bonding Has Peak Moments 173

Bonding Is Flexible 175

Bonding Is Resilient 176

Bonding during Crisis 178

Enjoying Your Baby 180

Kangaroo Care 180

The Benefits of Kangarooing 182

The Emotions of Kangarooing 183

Arranging to Kangaroo Your Baby 185

Infant Massage 186

Co-bedding for Multiples 187

Becoming Attuned to Your Baby 189

Honoring Your Baby's Uniqueness 189

Reading Your Baby 190

Engaging Your Baby 191

Follow Your Baby's Lead 192

Honor Your Baby's Attempts to Moderate Stimulation 192

Protect Your Baby from What's Overwhelming or Unpleasant 193

Provide What Soothes and Sustains Interest 193

8 Feeding Your Baby 197

Feeding Decisions 197

Advantages of Breast Milk and Breast-Feeding 198

Formula-Feeding 199

Staying with Your Decision to Feed Formula 200

Changing Your Mind and Deciding to Breast-Feed 200

Switching Back from Breast Milk to Formula 201

Deciding to Breast-Feed (and Pump) 202

Breast Care for Breast-Feeding 203

The Mechanics of Breast-Feeding 204

Establishing Your Milk Supply 204

Enhancing Your Milk Supply 206

Overcoming Challenges to Breast Milk Production 208

Breast Care When You Aren't Breast-Feeding 210

Meeting the Challenges of Breast-Feeding in the NICU 211

Waiting and Stockpiling 215

Supplementation and Bottle-Feeding 216

Providing Breast Milk without Feeding at the Breast 218

If You Must Stop Pumping or Nursing 219

Feeding Multiple Babies 221

9 The NICU Roller Coaster 225

Waiting 226

Waiting with Uncertainty 229

Waiting with Unpredictability 233

Waiting with Your Baby 236

Balancing Hopes and Fears 237

When Medical Practitioners Dash Your Hopes 241

When Hope Shines More Brightly 242

When Hope Changes Direction 243

Multiple Realities-Multiple Roller Coasters 244

Making Comparisons in the NICU 246

When Other Babies Die 248

When Other Babies Go Home 250

What to Remember about Comparisons 250

Making Medical Decisions in the Gray Zone 252

Neonatal Hospice 254

Decisions about Long-Term Care 257

The Extended NICU Stay 257

10 Discharge and Homecoming 261

Finding a Pediatrician 262

Transferring Back to Your Local Hospital 264

The Transition to Discharge 265

Practicing Care 267

Gaining Confidence in Your Caregiving Abilities 269

Discharge with Multiple Babies 272

Discharge with Medical Equipment...or Without 274

Monitors 274

Medical Devices 276

Coping with Your Baby's Ongoing Medical Needs 278

Homecoming, at Last 280

The Emotional Fallout 282

Feeling Unsettled 282

Dropping Your Emotional Guard 285

Reclaiming Parental Freedom and Responsibility 288

Your Ongoing Adjustment 292

11 Your Healing Transformation 297

Evidence of Your Healing 298

Letting Go of What Might Have Been 300

Moving On in the Face of Uncertainties 302

Talking to Your Growing Child about the NICU 303

Finding Meaning in Your Journey 305

Finding Treasure in Adversity 306

Weaving Treasures into Your Tapestry 308

Vulnerability, Appreciation, and Hope 309

Resilience 311

Personal Growth and Transformation 313

Seeing Your Transformation as Healing 316

A Resource for Parents 321

Index 323

About the Authors 330

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