Newborn Intensive Care

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1 Newborn Intensive Care What Every Parent Needs to Know 3rd Edition Jeanette Zaichkin, RN, MN, NNP-BC Editor in Chief

3 Also available from the American Academy of Pediatrics Caring for Your Baby and Young Child: Birth to Age 5 (English and Spanish) Heading Home With Your Newborn: From Birth to Reality Mommy Calls: Dr. Tanya Answers Parents Top 101 Questions About Babies and Toddlers The Wonder Years: Helping Your Baby and Young Child Successfully Negotiate the Major Developmental Milestones Raising Twins: From Pregnancy to Preschool Your Baby s First Year (English and Spanish) New Mother s Guide to Breastfeeding (English and Spanish) Food Fights: Winning the Nutritional Challenges of Parenthood Armed With Insight, Humor, and a Bottle of Ketchup A Parent s Guide to Childhood Obesity: A Road Map to Health Guide to Your Child s Nutrition ADHD: A Complete and Authoritative Guide Waking Up Dry: A Guide to Help Children Overcome Bedwetting A Parent s Guide to Building Resilience in Children and Teens: Giving Your Child Roots and Wings Sports Success Rx! Your Child s Prescription for the Best Experience Less Stress, More Success: A New Approach to Guiding Your Teen Through College Admissions and Beyond Mental Health, Naturally: The Family Guide to Holistic Care for Healthy Minds and Bodies Caring for Your School-Age Child: Ages 5 to 12 Caring for Your Teenager Guide to Your Child s Allergies and Asthma Guide to Toilet Training (English and Spanish) For more information, visit

5 Newborn Intensive Care What Every Parent Needs to Know 3rd Edition Jeanette Zaichkin, RN, MN, NNP-BC Editor in Chief

6 American Academy of Pediatrics Department of Marketing and Publications Maureen DeRosa, MPA Director, Department of Marketing and Publications Mark Grimes Director, Division of Product Development Eileen Glasstetter, MS Manager, Product Development Carrie Peters Editorial Assistant, Product Development Sandi King, MS Director, Division of Publishing and Production Services Linda Diamond Manager, Art Direction and Production Kate Larson Manager, Editorial Services Shannan Martin Print Production Specialist Jill Ferguson Director, Division of Marketing Linda Smessaert Manager, Clinical and Professional Publications Marketing Bob Herling Director, Division of Sales Cover photography by Gigi O Dea, memoryportraitsbygigi.com. Used by permission. Quotes on pages 23, 101, 177, 221, 353, 397, 433, 465, 525, 557, 581, 599 from: THE HOUSE AT POOH CORNER by A.A. Milne, Illustrations by E.H. Shepard, copyright 1928 by E.P. Dutton, renewed (c) 1956 by A.A. Milne. Used by permission of Dutton Children s Books, A Division of Penguin Young Readers Group, A Member of Penguin Group (USA) Inc., 345 Hudson Street, New York, NY All rights reserved. Quotes on pages 1, 49, 75, 151, 191, 271, 335, 411, 561 from: WINNIE-THE-POOH by A.A. Milne, illustrated by E.H. Shepard, copyright 1926 by E.P. Dutton, renewed 1954 by A.A. Milne. Used by permission of Dutton Children s Books, A Division of Penguin Young Readers Group, A Member of Penguin Group (USA) Inc., 345 Hudson Street, New York, NY All rights reserved. Library of Congress Control Number: ISBN: MA0451 The recommendations in this publication do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate. Products are mentioned for informational purposes only. Inclusion in this publication does not imply endorsement by the American Academy of Pediatrics. The publishers have made every effort to trace the copyright holders for borrowed material. If they have inadvertently overlooked any, they will be pleased to make the necessary arrangements at the first opportunity. Copyright 2010 American Academy of Pediatrics. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without prior permission from the publisher. This book was printed in September 2009 at Sheridan Books, Inc in Ann Arbor, MI, United States of America /

7 Contributors Julie M. R. Arafeh, RN, MSN Obstetric Simulation Specialist Center for Advanced Pediatric and Perinatal Education Lucile Packard Children s Hospital Stanford University Palo Alto, CA 1: Expecting the Unexpected Debbie Fraser Askin, MN, RNC-NIC Associate Professor, Centre for Nursing and Health Studies Athabasca University Athabasca, Alberta, Canada Neonatal Nurse Practitioner, NICU St Boniface General Hospital Winnipeg, Manitoba, Canada 8: Mother-Baby Factors: Effects on Newborn Health Appendix B: Medications and Your Baby J. Craig Jackson, MD, MHA, FAAP NICU Medical Director, Seattle Children s Hospital Professor of Pediatrics, University of Washington Seattle, WA 10: Major Medical Problems Patricia Jason, RN, BSN, CCRN Neonatal Intensive Care Transport Nurse Seattle Children s Hospital Seattle, WA 2: A Different Beginning Terrie Lockridge, MSN, RNC-NIC Staff Nurse Neonatal Intensive Care Unit Swedish Medical Center Seattle, WA 6: Parenting in the NICU Diane B. Longobucco, RNC-NIC, MSN, APRN, NNP-BC Clinical Nurse Specialist Maternal/Child Services Saint Francis Hospital and Medical Center Hartford, CT 11: Neonatal Surgery David J. Loren, MD, FAAP Division of Neonatology University of Washington Department of Pediatrics Seattle Children s Hospital Seattle, WA 3: NICU Players: Working With the Team Brenda Lykins, RNC-NIC, BSN Neonatal Outreach Coordinator MultiCare Regional Perinatal Outreach Program Tacoma, WA 4: Getting Acquainted Denise Maguire, PhD, RN-BC, CNL Assistant Professor Interim Assistant Dean of Academics, Masters Program Director, CNL Concentration University of South Florida Tampa, FL 13: When a Perfect Baby Is No More v

8 Contributors Lori A. Markham, MSN, MBA, NNP-BC, CCRN Program Manager, Neonatal Nurse Practitioners Clinical Manager, Neonatal Transport Team Seattle Children s Hospital Seattle, WA 10: Major Medical Problems Cindy C. Martin, MSN, RN, IBCLC, CKC Lactation Consultant, Neonatal Intensive Care Unit Level III Sarasota Memorial Hospital Sarasota, FL 5: Feeding Your Baby Karin Menghini, RN, MSN, NNP-BC Neonatal Nurse Practitioner St Joseph Mercy Hospital Ann Arbor, MI 14: One Step Closer to Home: The Intermediate Care Experience 15: Homeward Bound Katie Stiver, MSW, LICSW Neonatal Intensive Care Unit Social Worker Seattle Children s Hospital Seattle, WA 7: Organizing Your Finances Lauren Thorngate, PhD(c), RN, CCRN Clinical Nurse Specialist, NICU University of Washington Medical Center Seattle, WA 6: Parenting in the NICU Gary M. Weiner, MD, FAAP Clinical Associate Professor St Joseph Mercy Hospital Ann Arbor, MI Wayne State University Detroit, MI 9: Problems Associated With Premature Birth Jeanette Zaichkin, RN, MN, NNP-BC Neonatal Outreach Coordinator Seattle Children s Hospital Seattle, WA 1: Expecting the Unexpected 2: A Different Beginning 5: Feeding Your Baby Appendix C: Car Safety Seats TrezMarie T. Zotkiewicz, RNC-NIC, MN, APRN Maternal-Child Clinical Nurse Specialist Child Developmental Consultant New Orleans, LA 16: Home at Last 17: Looking Ahead Ellen Tappero, DNP, RN, NNP-BC Director, Neonatal Nurse Practitioner Programs Neonatology Associates, Ltd Phoenix, AZ 12: Diagnostic and Therapeutic Techniques: Progress and Promise vi

9 Reviewers Robert M. Arensman, MD, FAAP Keleen H. Arnold, LOTR Henry H. Bernstein, DO, FAAP Joseph Anthony Bocchini Jr, MD, FAAP Michael Thomas Brady, MD, FAAP Carrie Lynn Byington, MD, FAAP Dennis R. Durbin, MD, MSCE, FAAP Jaime Fernandez, MD, FAAP Mary P. Glode, MD, FAAP Jay P. Goldsmith, MD, FAAP Karen D. Hendricks-Muñoz, MD, FAAP Mark L. Hudak, MD, FAAP Bonnie Kozial Susan Landers, MD, FAAP Karen Emmerman Mazner H. Cody Meissner, MD, FAAP Suhas M. Nafday, MD, FAAP Sheri L. Nemerofsky, MD, FAAP Angel Rios, MD, FAAP vii

10 Dedication To parents of babies who require newborn intensive care. Find strength in knowledge. Face challenges with teamwork. Celebrate each step forward. viii

11 Table of Contents Foreword Acknowledgments Introduction xi xiii xvii 1 Expecting the Unexpected 1 Jeanette Zaichkin, RN, MN, NNP-BC Julie M. R. Arafeh, RN, MSN 2 A Different Beginning 23 Jeanette Zaichkin, RN, MN, NNP-BC Patricia Jason, RN, BSN, CCRN 3 NICU Players: Working With the Team 49 David J. Loren, MD, FAAP 4 Getting Acquainted 75 Brenda Lykins, RNC-NIC, BSN 5 Feeding Your Baby 101 Cindy C. Martin, MSN, RN, IBCLC, CKC Jeanette Zaichkin, RN, MN, NNP-BC 6 Parenting in the NICU 151 Lauren Thorngate, PhD(c), RN, CCRN Terrie Lockridge, MSN, RNC-NIC 7 Organizing Your Finances 177 Katie Stiver, MSW, LICSW 8 Mother-Baby Factors: Effects on Newborn Health 191 Debbie Fraser Askin, MN, RNC-NIC 9 Problems Associated With Premature Birth 221 Gary M. Weiner, MD, FAAP 10 Major Medical Problems 271 Lori A. Markham, MSN, MBA, NNP-BC, CCRN J. Craig Jackson, MD, MHA, FAAP ix

12 Table of Contents 1 1 Neonatal Surgery 335 Diane B. Longobucco, RNC-NIC, MSN, APRN, NNP-BC 12 Diagnostic and Therapeutic Techniques: Progress and Promise 353 Ellen Tappero, DNP, RN, NNP-BC 13 When a Perfect Baby Is No More 381 Denise Maguire, PhD, RN-BC, CNL 14 One Step Closer to Home: The Intermediate Care Experience 411 Karin Menghini, RN, MSN, NNP-BC 15 Homeward Bound 433 Karin Menghini, RN, MSN, NNP-BC 16 Home at Last 465 TrezMarie T. Zotkiewicz, RNC-NIC, MN, APRN 17 Looking Ahead 525 TrezMarie T. Zotkiewicz, RNC-NIC, MN, APRN Appendix A: Weights and Measures: Conversion Charts 557 Appendix B: Medications and Your Baby 561 Debbie Fraser Askin, MN, RNC-NIC Appendix C: Car Safety Seats 581 Jeanette Zaichkin, RN, MN, NNP-BC Appendix D: Parent Resources 599 Appendix E: Choking/CPR 613 Bibliography 617 Glossary 645 Index 693 x

13 Foreword The birth of a baby is one of the most rewarding, exhausting, exciting, beautiful, personal, and emotionally charged events of a lifetime. When everything proceeds perfectly, it is also one of the most joyous and satisfying experiences. But when everything does not go well when labor is complicated or the baby is born prematurely or with a congenital malformation or an illness of one sort or another different emotions take over. If your baby is now in an intensive care nursery, you may be feeling anxiety, confusion, sadness, guilt, anger, and even grief over the loss of the normal, healthy birth experience you had envisioned. But your primary focus is likely obtaining as much information as you can about this new situation. You probably have a multitude of questions for which you want concrete, simple answers. You want to know what will come next, whether your baby is suffering, and what is being done to alleviate his or her pain. But most of all, you want to know the implications and eventual outcome of your child s condition, both over the next few days and for your child s lifetime. All too frequently the answers to many of these questions are not immediately available. Despite our tremendous progress in both the science and the art of neonatology over the past 2 to 3 decades, we can seldom predict the outcome of most neonatal conditions for an individual baby until we have had the benefit of some time to watch those conditions and the complications associated with them evolve. But we do know a great deal about your baby s medical condition, what may come next, and what can be done to decrease pain and suffering. In fact, the amount of information is so voluminous, it is unlikely that you will be able to absorb it all during the many discussions you will have with the doctors and nurses caring for your baby. This book will help you prepare for those discussions and know what questions to ask. It will also serve to reinforce, review, and clarify the information you receive from those who are helping your baby. Neonatal intensive care has evolved from a single physician and a single bedside nurse caring for a baby to one or more complex teams of physicians, nurses, and allied personnel working together to apply their combined expertise to deliver optimum care to your baby. Although this team approach compounds the knowledge and skills available to help your child, it can also sometimes cause confusion, particularly when you receive information about the same subject from multiple sources in different forms and from different perspectives. Remember that you are also a critical member of this team and your questions, opinions, and recommendations should be highly valuable and respected by the other members. xi

14 Foreword This book can help you make sense of your baby s complicated situation. Most of all, it can help you feel more in control, and it can show you how you can participate in the team effort to make your baby well. Although there is a considerable amount of science associated with neonatal intensive care, there is also a certain degree of art and often several different styles of practice. Multiple possible therapies can be applied in several different ways for almost every condition. I came to know Jeanette Zaichkin through our mutual service on a committee that was organized to set national standards for neonatal resuscitation, where addressing multiple options and different styles consumed many of the discussions. It became evident during those discussions that Ms Zaichkin has a tremendous fund of knowledge and a real knack for representing multiple viewpoints and this book, with its information coordinated from multiple authors, confirms that assessment. As you read this book, you will frequently find several possible therapies presented for a single condition. The therapies your baby is receiving are likely included, but you may also find it helpful to be knowledgeable of the other options for use in future discussions with your baby s physicians and nurses. Ms Zaichkin and her colleagues have done a superb job of addressing complex problems and making them understandable to people with little or no medical training. And yet they have not oversimplified. Although the chapters may not have been written specifically for your baby, you will likely find that they explain the care being delivered to your baby in your neonatal intensive care unit and offer strategies for becoming a valuable partner in your baby s health care. This is a wonderful book; one I think you will find very helpful as you negotiate this emotionally challenging time in your and your baby s life. John Kattwinkel, MD, FAAP Charles Fuller Professor of Neonatology University of Virginia Charlottesville, VA xii

15 Acknowledgments I am pleased to announce that the third edition of Newborn Intensive Care: What Every Parent Needs to Know starts a new life as a publication of the American Academy of Pediatrics (AAP). This edition is not only revised and updated by authors who are experts in the field of neonatology, but is now supported by the education, national policy, and research efforts of the AAP. This third edition is a major accomplishment from a dedicated group of physicians, nurse practitioners, neonatal nurses, social workers, and neonatal intensive care unit (NICU) parents who were supported by the AAP publications team of content reviewers, copy editors, designers, and project staff. Thanks to my family for their understanding and support during this intensive project. Thanks to the authors of this book for contributing their valuable time, writing talent, and professional expertise. Thanks to Charles and Suzanne Rait of NICU Ink Book Publishers for accepting the original proposal for this book and for guiding me through the first 2 editions. Most important, thank you for your valuable and enduring friendship. Thanks to the AAP team. Mark Grimes, Director, Division of Product Development, for his support of this project and his willingness to explore acquisition of this book for publication. Eileen Glasstetter, Manager, Division of Product Development, who kept everyone on track and on time, encouraged and supported me at every turn, and guided our project to completion on a very aggressive timeline. Wendy Marie Simon, Director, Division of Life Support Programs, who has always believed in the value of this book for NICU parents and introduced it to colleagues at the AAP. Thank you for being my friend and Destiny Person. Thank you to the many people who contributed to the photographs and artwork for this book. Your pictures are worth a thousand words. Gigi O Dea of Memory Portraits by Gigi, Sarasota, FL, for contributing her amazing photographs of NICU babies and their families, including the 3 photos for our cover. Heidi Nakamura, University of Washington Medical Center NICU. Lauren Thorngate, University of Washington Medical Center NICU, who facilitated the acquisition of numerous photographs and parent permissions. xiii

16 Acknowledgments Lori Markham, Seattle Children s Hospital, for taking photos at Providence Regional Medical Center, Everett, WA. Maureen Goins, Providence Sacred Heart Medical Center & Children s Hospital, Spokane, WA. Julie Arafeh, Lucile Packard Children s Hospital at Stanford University. Shelly Vaziri Flais, MD, FAAP, for the photos on pages 488 and 555. David W. Ehlert, medical illustrator, University of Washington, who created the gastroschisis series on page 332. Jordan Hartman, Pacific Lutheran University, Tacoma, WA. Linda Diamond, for the layout and design of this book. Kenneth Gow, MD, Seattle Children s Hospital, for the photos on page 331. I wish to thank my fellow colleagues who contributed to this book in so many ways. Seattle Children s Hospital Nate Brown Shauna Carrette Vicki Cronin Denise Dubuque Kenneth Gow Stephanie Hillman Meg Larkin Wendy Nicon Cathie Rea Paige Richardson Jennifer Seymour Mirtha Vaca-Wilkens Lani Wolfe University of Washington Medical Center Catherine Cordner Heidi Nakamura Lauren Thorngate Airlift Northwest, Seattle Frare Davis Photography Kim Lambert Mardie Rhodes Nan Walker xiv

17 Acknowledgments A special thanks to the hospital staff, the babies, and their families from all over the United States who allowed us to share their NICU experiences through photos for this third edition. The Bugbee family The Burns family The Clark Denny family The families of Gigi O Dea photographs The Feldpausch family The Garka family The Hendler family The Kellington family The Lindsay family The Mera family The McDonald family The Parent family The Walters family The Reynolds family The Zaichkin family Thank you to the health care professionals whose unique contributions are much appreciated. Marcy Mallouf, Lucile Packard Children s Hospital at Stanford University Kimberly Radtke, Manager, Breastfeeding Coalition of Washington Kathryn E. Barnard, Professor Emeritus, Family and Child Nursing, University of Washington Kathleen Southerton, State University of New York Liz Carr and David McBride, Washington State Department of Health We wish to acknowledge the chapter authors of the first 2 editions of this book. Their excellent work provided the foundation on which this third edition was created. Debbie Fraser Askin Susan Tucker Blackburn Ann Flandermeyer Kathleen A. Green Sharon Gregory Susan M. Kearns Carole Kenner Denise Merrill Margaret M. Naber Kathleen M. Pompa Ellen P. Tappero Patricia Thornburg Ginna Wall TrezMarie T. Zotkiewicz xv

19 Introduction Having a baby is a miraculous accomplishment. But your baby is not perfect, which seems unfair and shatters any illusions of a traditional beginning. At first, most parents of sick and premature babies don t know how to feel and are often torn between joy and sadness. For almost every parent in the neonatal intensive care unit (NICU), though, one desire remains consistently strong and that is to be recognized as the baby s parent. In other words, NICU parents need to be included in the care of their own special babies. The authors of this book invite you to become an important member of your baby s health care team. We believe that parents can and should play an active role in their baby s care. This book was written for parents who wish to learn about their baby s illness, how to overcome the barriers to NICU parenting, and how to prepare for and nurture their NICU graduate at home. Some of the information in this book may seem frightening at first, but knowledge is empowering. When you understand your baby s illness and treatments, you will gain confidence and be able to communicate effectively with your baby s caregivers. You can then form the working partnership with the medical and nursing staff that is essential for your sense of control and for mutual problem-solving. Neonatal intensive care is a huge subject, and your baby will certainly not have every problem in this book. Because your NICU experience is unique, this book cannot answer every question or prepare you for every situation. Read through the table of contents to find the sections that interest you most and know that what interests you will change as your baby progresses through hospitalization. We hope that this information answers many of your questions, and we encourage you to ask your NICU team about what you do not understand. We hope you will feel better informed and prepared to celebrate the achievements and manage the crises that are an inevitable part of every family s life. It would be unrealistic to expect a carefree journey through the NICU. Intensive care is stressful by nature and overwhelming at times. Reading this book and learning about what happens in the NICU will help you gain confidence and feel more relaxed. You will meet some incredible people to help you through the experience. You will meet other parents whose support will give you strength. You will meet health care professionals who have devoted their careers to helping babies like yours. You will discover that the NICU offers a unique blend of technology and compassion that encourages healing and growth not only for babies, but also for parents. xvii

20 Introduction This is probably not the experience you had hoped or planned for, but the NICU offers opportunities you otherwise would have missed. Right from the beginning, you can learn how to communicate effectively with health care professionals and how to use community resources. You will learn to value what is unique and special about your baby and what is most important for your baby s future. And when your baby s hospital stay is over, you will probably realize that your NICU experience has made you stronger, smarter, and more aware of what is most important in your life. We want you to have a positive NICU experience. Even though your baby has had a difficult start, it is an amazing beginning just the same. Use this book to guide you through your experience, and remember that your baby s nurses and physicians are your most important sources of information. As your baby grows, you will continue to learn things about your child from teachers, coaches, health care professionals, and all of the people who influence your child s life. Learning how to be a good parent never ends. We hope you get a good start here and enjoy learning about your very special baby. Jeanette Zaichkin, RN, MN, NNP-BC We know that you would prefer to read he if your baby is a boy and she if your baby is a girl. It is difficult to communicate with the distraction of his/her and he/she, however. Therefore, the baby s gender in this book alternates by chapter. Likewise, we know that both men and women are nurses; however, we refer to nurses as she. xviii

NEW. Maternal & Child Health/ Pediatric Nursing

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