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Coming Home from the NICU


Coming Home from the NICU

A Guide for Supporting Families in Early Infant Care and Development
Authors: Kathleen Vandenberg Ph.D., Marci J. Hanson Ph.D.

ISBN: 978-1-59857-019-9
Pages: 160
Copyright: 2013
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Size:  7.0 x 10.0
Stock Number:  70199
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For families of an infant leaving the NICU, nothing’s more exciting—and challenging—than the critical transition to home life with their baby. Support the NICU-to-home transition with this accessible book, the complete guide to helping parents meet their baby’s special needs and promote optimal development in the first year after homecoming.

Invaluable for a wide range of professionals—including early interventionists, OTs, PTs, public health nurses, physicians, and social workers—this book is the key to providing family-centered, developmentally supportive guidance in the months after the NICU. Professionals will deepen their understanding of the emotional and physical challenges of the NICU experience, and they’ll get in-depth guidance on how to support parents effectively as they

  • develop a loving and satisfying relationship with their baby
  • manage the changes to their daily routines and home environment
  • recognize, interpret, and respond to the baby’s signals and behaviors
  • actively encourage motor and language development
  • support the baby’s management of sleep/wake cycles
  • identify concerns about the baby’s development
  • learn the timing, intensity, and amount of activity that work for their unique baby
  • promote their baby’s self-regulation
  • locate and access community resources and social supports

To illuminate the incredible strength of parents of premature infants, the book includes powerful stories of real families who share their experiences of supporting and loving their babies in the NICU and beyond. Readers will also receive printable handouts to share with families—Coming Home: What to Expect; Reading Your Baby’s Cues; Feeding Your Baby; Positioning and Handling Strategies; Communicating With Your Baby; Playing With Your Baby; Helping Your Baby Learn; and more—and lists of resources, websites, and organizations that provide additional information and support.

With this definitive guide from two leading experts in infant development and early intervention, professionals will provide sensitive, effective support and guidance to new parents as they make a smooth transition to home life and develop strong relationships with their babies.


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Reviews

Review by: J. Kevin Nugent, The Brazelton Institute, Division of Developmental Medicine, Boston Children's Hospital and Harvard Medical School
"This is a truly invaluable resource for professionals who work with parents and their infants, who are making the transition from NICU to home. With their vast experience in working with infants and families, Dr. Kathleen VandenBerg and Dr. Marci Hanson have captured with sensitivity and understanding the challenges faced by infants and families, during this transition. Brimming with clinical vignettes and practical information sheets, including guidelines for professionals and tips for parents, this book successfully balances cutting edge research and clinical practice, in a way that makes the material accessible to both professionals and parents alike."
Review by: Zack Boukydis, NICU Network Neurobehavioral Scale Trainer; Fullbright Fellow US/Hungary; Author, Collaborative Consultation with Parents and Infants in the Perinatal Period
"This book is a much needed resource for parents and professionals working with parents on the transition of preterm infants from NICU to home care. It is written in a style which is highly accessible for parents. The book provides necessary therapeutic frameworks for parents and professionals to be able to work effectively together to understand each infant's behavior and promote each infant's well-being. In addition, the book provides invaluable information about innovative interventions, as well as community and peer resources for parents of pre-terms."

Contents of the Accompanying CD-ROM
About the Authors
Note to the Reader
Acknowledgements

  1. Introduction
  2. Impact of the Newborn Intensive Care Experience
  3. Bringing Baby Home from the NICU
  4. Nurturing the Parent–Infant Relationship
  5. Understanding Early Infant Behavior and Development
  6. Supporting Babies' Early Development as They Make the Transition Home
  7. Supporting Families
  8. Finding Resources for Children with Special Needs

References
Appendix A      Useful Terms
Appendix B      Understanding Age: Chronological and Corrected Age
Appendix C      Organizations and Agencies Concerned with Children's Health and Development: Resources for Parents and Professionals
Appendix D      Parent and Caregiver Resources on Prematurity
References
Appendix E      Snapshots of Handouts on the Accompanying CD-ROM
Index

CD-ROM Contents

  • Coming Home: What to Expect
  • Reading Your Baby's Cues
  • Feeding Your Baby
  • Positioning and Handling Strategies for Caring for Your Baby
  • Communicating with Your Baby
  • Playing with Your Baby
  • Helping Your Baby Learn
  • Fostering Your Baby's Movements
  • Suggestions for Supporting Development in the First Year
  • Getting to Know the Family

Excerpted from Chapter 3 of Coming Home from the NICU: A Guide for Supporting Families in Early Infant Care and Development, by Kathleen A. VandenBerg, Ph.D., & Marci J. Hanson, Ph.D.
Copyright© 2013 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

COMING HOME
On arriving home, most parents are still reeling from the reality that they truly had a baby in the intensive care nursery. It is important for families to give themselves time to deal with the trauma and to acknowledge the change in parenthood. Every parent has a wide range of feelings, but it is a milestone for all families to finally take their baby home. Still, parents will need to make a lot of adjustments for their baby's care, such as providing for in-home delivery of supplies and medical equipment, coordinating doctor appointments, and learning procedures such as cardiopulmonary resuscitation (CPR) and where the nearest emergency medical services are.
       During the early days and weeks at home, most babies who graduate from the NICU will acquire new skills and refine the ones that they learned in the nursery. These include continuing to manage physiology or body function and learning what it is like to have stable, predictable breathing and steady periods of feeling comfortable. In addition, the baby is experiencing unencumbered movement and new body positions and learning about adjustments to sleeping and waking. The baby learns to adapt to being held for hours. The baby is also learning to be successful at experiencing a calm, quiet atmosphere and the warmth of a parent helping him or her to stay relaxed.
       Over the next several months and years, each baby will experience an entire world of new sounds, tastes, smells, and tactile and visual experiences. The initial steps on this journey will involve developing more organized and predictable patterns of behavior in the early basic developmental levels of the recovering newborn. The most essential activity for the newborn is to get to know and become intertwined with the lives of parents and caregivers. The transition to home is an important point along this trajectory.

WHAT PARENTS CAN EXPECT AFTER THE NICU
A life-changing transition process takes place as babies and families prepare to move home from the NICU. Babies making this transition may have an inconsistent ability to alert and orient to the people and objects in their immediate environment. They may show increased sensitivity to intense light or noises and to increased activity around them. It is important to give babies time to adjust to new environments. Slowly, gently introducing a baby to new environments and providing a calm, quiet space helps the baby gradually adjust and respond to the world beyond the hospital. Outlined next are some of the unique circumstances that families can expect as they introduce their baby to the home and some tips on how to ease this transition.

Unique Needs of Babies Making the Transition Home
Some infants will continue the course of steady growth they started in the NICU and will gain weight as they improve their new ability to breast-feed or take their feedings from a bottle. However, even if a baby is medically ready to go home and may have reached term age, he or she may not be as robust and organized as a full-term healthy infant. Healthy preterm infants, even those who are only 2–4 weeks premature (with gestational ages of 34–36 weeks of pregnancy) may have minor physiologic irregularities that show up as slower or faster breathing periods, some variability in skin color (some periods of becoming pale), and mild digestive sensitivities, such as difficulty burping and frequent gas passing (see Chapter 5 for more information on these topics). They may show mild motor system disorganization in some movements, such as arm, leg, and finger extensions. They may have some difficulty with self-calming and might require help with this new skill (see Chapter 6 for tips on helping infants to self-calm).

Changes in Daily Routines
Some infants will continue to require medical management at home; they may even be rehospitalized or require surgery in the first year. The daily medical demands of a premature infant who has spent several weeks in the NICU can be overwhelming. The medical needs of the infant and emotional needs of the family still must be met as the family copes with a recovering or chronically ill infant—or even a healthy preterm infant— coming home from the NICU.
       Parents also will need to deal with insurance issues, schedule pediatric doctor visits, and coordinate appointments with specialists. The public health nurse may visit, and, in some cases, physical and/or occupational therapists may be making visits to the home. Arranging delivery of oxygen and medical supplies is ongoing. Other demands to meet the medical management may include tube feedings and completing medical forms in addition to taking care of other children and a household. As one mother said,

I had very little time to just hold and cuddle my baby; it was more work than having him in the hospital. I will always regret that we were crowded with medical issues and feel I lost that time to relate to him.

Changes to the Home Environment
In addition to changing the family's way of life, the change of environment from the hospital to home will be a huge transition for the baby. The home will be full of new and different sounds, such as telephones, television, and the voices of other children. The lighting and activity levels and the daily pattern of care including day–night cycling, family meals, and interactions will be completely different from what the baby experienced in the NICU. It is helpful to remember that the baby leaving the hospital has already had to adapt to life in the hospital environment after the womb. This is a fragile new ability; it requires developmental skill to be able to sleep despite noise and light. The baby has become used to the patterns in the hospital. Adapting to the different and new sounds, lighting, and activity levels in the home may be difficult for some babies. They may react by crying or becoming fussy in the first few days or the first week. Some babies react by sleeping more; others may become frustrated and inconsolable. Typically, this type of initial reaction may last a week or two and taper off as babies begin to adjust to their new surroundings. Some babies adapt faster than others, but it is typical for all babies to show some reaction to the new environment and to the change.
       A baby making the transition home from the NICU will do best with environmental adaptations. The general recommendation is to create a calm, quiet, and soft environment for the baby. However, babies are very individualized, and some do better in contexts that provide low-level sound or light stimuli. Parents can try to avoid loud and/or sudden sounds and bright lights, and they should especially avoid shining light directly into the baby's face.

Emotional Demands
Taking care of a medically fragile infant at home is emotionally challenging for many families. It means that there is little time for meeting the needs of other family members. For first-time parents, caring for a premature infant can take huge priority over attending to other relationships. For parents with other children, the needs of other children can become less of a priority. Fear regarding the new baby's eventual developmental outcome plagues some parents. They may worry about whether their child will have cerebral palsy or intellectual disabilities. Along with fear may come depression as the parents cope with medical care, the infant's behavioral uniqueness, and possible feeding concerns. Feeding problems can appear as oral aversion, lack of good sucking ability, or simply a lack of desire to eat. The problems that result from maintaining a feeding regimen may leave parents exhausted and defeated. If their baby requires ongoing oxygen to treat respiratory illness, the parents' fear and depression can intensify. Family members may wonder when it will end, what went wrong, and why it happened to them. The baby's behavior and hypersensitivity to the environment can be a mystery to parents. This baby likely does not respond the way their other children did, and parents may not be sure if their baby is telling them that he or she is hurt or tired. They may be concerned that the baby does not look at them.

I never have held my son and cradled him in my arms and talked to him. He looks away from me and cannot manage to look and listen to me at the same time.
See Chapter 4 for more discussion of the emotional challenges of parents. Many considerations come to the fore as babies and families make the transition home from the hospital. Medical, emotional, and behavioral issues vary; the following three examples illustrate how varied those issues can be.

CASE STUDIES

Baby Tracy      Tracy was in the NICU because of a very early birth. She was 16 weeks premature (born at 24 weeks of pregnancy). She had a birth weight of 2 pounds, 2 ounces (856 grams) and was considered to be in the very low birth weight range. She progressed through typical levels in the NICU and moved steadily from being an acutely ill premature baby to a healthier baby weighing 4 pounds, 8 ounces. She learned to breastfeed, took all of her feedings, and slept on a fairly consistent schedule for the last 2 weeks in the hospital after being moved to the special care nursery to begin her transition toward discharge. Her parents learned to change her diapers and care for her breathing tube (nasal cannulae used to deliver oxygen). Her family prepared to take her home and looked forward to discharge day. They bought premature baby clothes and stocked up on newborn diapers for premature babies. They bought a car seat. They decided to go to their family practitioner for Tracy's medical care—the doctor who had cared for their first baby, who was full term. But they felt they were unprepared for what happened after they came home with Tracy. Tracy's father described her after the first 2 weeks at home:
We learned that our baby was a baby with high levels of sensitivity to her environment. She reacted strongly and easily to the light being turned on and was upset by unfamiliar new sounds at home—for example, the telephone, doorbell, and TV. She fussed off and on during the day and seemed uncomfortable at night. She appeared to be overreacting to the light and noises, startling and throwing out her arms and legs with uncontrolled squirming that she could not stop on her own. Her breathing became more and more difficult for her, and she became unstable. She began to require both my wife's and my attention day and night. We felt that we had suddenly assumed the role of the doctors and nurses. Feeding was a nightmare. She became so tired with feeding that she eventually stopped feeding. Then she began to lose weight.

       Tracy was a baby with chronic lung disease, feeding difficulty, and low energy. She demonstrated the sensitivities of a premature, very low birth weight baby who was working hard to adapt to her environment. The ongoing work of managing her breathing was taxing for her, taking extra energy. In addition, the energy she expended to maintain her feedings was taking its toll on her. She was becoming exhausted and had difficulty keeping up with the demands of her environment, maintaining the energy necessary to breathe, gain weight, and recover from significant illness. She was very sensitive to her environment and had difficulty managing light, noises, and even some handling. She seemed to have difficulty shutting out the intruding stimuli in her environment and could not protect herself from the stress, which led to difficulty with breathing. Her high reactivity was costly to her energy and responsiveness. A prolonged diaper change coupled with a bath was extremely fatiguing for her. Her lung disease meant that she had an increased need for more calories due to the demands of working hard to breathe. The tension mounted for her parents and the family as they poured all of their efforts into helping Tracy carefully ingest full feedings. All of these events caused Tracy to be exhausted; her parents also were exhausted.
       Tracy needed to be seen at a pediatric clinic or by an experienced doctor who could evaluate the feeding difficulty of a recovering very low birth weight baby. Her high reactivity may have been interfering with her growth, requiring special support to help Tracy improve her ability to take in consistent calories without becoming exhausted. It might also have caused Tracy to become lethargic, leaving her unable to put out energy to interact with her family or her environment.
       Tracy's parents received the help of a knowledgeable, well-trained infant development specialist who understood typical behavioral and environmental reactions in NICU graduates. The specialist's skills in observing and interpreting the baby's reactions to the environment and behavioral patterns enabled her to show Tracy's parents ways to support their baby and avoid becoming so fatigued. Watching Tracy's behavior before, during, and after the feeding, the specialist knew how to support Tracy's efforts to reach balance and control. The developmental specialist pointed out to Tracy's parents the first, subtle signs indicating that Tracy was moving into stress or discomfort, such as a mild skin color change from pale to increased pale. For example, at the beginning of her feeding, Tracy was gulping very quickly, using all of her energy to take in as much as possible. The developmental specialist showed the parents that by taking the nipple out periodically after Tracy had sucked and swallowed a few times, they could help her rest before she became overwhelmed and too tired. The specialist also suggested that Tracy rest with her mom after feeding. Handling her gently and very slowly made a difference in sustaining an adequate energy level for this baby. As demonstrated in the case study, babies work hard to communicate their needs to their families. Although their responses may differ from those of healthy, full-term infants, their connection to their parents is just as strong.

From One Parent of a Graduate from the NICU to Another
As new parents of a baby leaving the NICU, you are beginning a new chapter in your journey together. It is a time when parents truly begin to claim their baby as theirs. As in any relationship, it takes weeks or months to build the connections. The time between early birth and the due date was not what you planned. Parents typically have many questions when their baby is approaching discharge from the hospital. The following are the top ten questions parents have at the time of discharge (Discenza, 2009).

  1. Is my baby really ready to go home? My baby seems so fragile.
  2. Am I capable of taking care of my baby on my own? I am really scared!
  3. What do I do if I need help the first night or week?
  4. How can I tell my family to limit visiting? Handling? How can I let them know my baby needs slow, gentle care?
  5. What can I do about my own feelings of fear and depression? I cry a lot.
  6. What will our lives be like?
  7. I am very worried about our finances. How can I handle the bills?
  8. Whom can I call if I need help?
  9. What do I do if we have a problem with feeding?
  10. What if my baby is very irritable?

The following guidelines may be helpful as you move into the next step of building your life together (Perez & Newstetter, 2008):

  1. Before leaving the hospital, discuss questions and concerns with the nurse or doctor who knew your baby best.
  2. Ask for a list of the "red flags" or signs of medical problems you need to know.
  3. Be clear about when you should call the emergency room or your baby's doctor.
  4. Avoid making plans with relatives or friends for the first 4–5 weeks of your baby's homecoming—maybe longer—unless they are coming to help you.
  5. Remember that you have been through a true ordeal: an experience that was supposed to be happy turned out differently. Be kind to yourself and realize that you are also recovering.
  6. Your reactions to the hospitalization and birth of your infant may be different from your spouse or partner's reaction. We all have different ways of coping. Respect others and ask that they respect you.
  7. Include your other children in the discussions about your experience in the intensive care nursery. Ask them how they are feeling having their brother or sister home. Listen to their responses and accept how they feel.
  8. It may be appropriate for you to talk to a professional if your emotions feel overwhelming and strong, especially if the situation is having a negative impact on your relationships with your baby and other family members.
  9. Don't be afraid to ask for help. A friend, relative, member of a faith community, medical provider, or counselor may help you get through this experience. Avoid isolating yourself.
  10. Trust yourself. Act on your feelings, especially if you feel concerned about any issues with your baby. Fear can become confidence as you sort out the difference between your feelings and need for intervention.
  11. Remember that you, as the parent, are your baby's best and most important teacher. Your baby will calm better for you, especially when you move slowly and gently and watch your baby for signs that things are comfortable for him or her.

MOVING FORWARD
All transitions are times of change and some tensions, and the birth of a new baby presents numerous adjustment issues. In the early months, many parents of new babies seek help as they grapple with challenges related to their babies' behavior in regulating and stabilizing their moods and states, particularly around concerns such as crying, feeding, and sleeping (Lillas & Turnbull, 2009). The behaviors of a baby who is born too early or with illness will likely pose particular challenges in these same areas as the parents learn to read the language of their baby's behavior and make the adaptations and adjustments needed as they bring this newest family member home. In addition to the informal support provided by family members and friends through their loving care and efforts to help out, professionals in infant development care can support parents to make these needed adjustments and connect with their newborns. The remainder of this book is devoted to suggestions to help family members understand their infants' reactions and behavior so that they can form strong ties and relationships with one another.

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