Coming Home from the NICU: A Guide for Supporting Families in Early Infant Care and Development [With CDROM] - Softcover

Kathleen A. VandenBerg, Ph.D., is a neonatal development specialist, consultant, author, and trainer for professionals in the neonatal intensive care unit (NICU) and in early intervention programs. She has provided individualized family-centered developmental care for infants and families in the NICU and in the home for more than 30 years.

Currently, she is Academic Administrator in the Department of Pediatrics (Neonatology) at UCSF and Center Director of the West Coast Newborn Individualized Developmental Care and Assessment Program (NIDCAP) and Assessment of Preterm Infants’ Behavior (APIB) Training Center, where she is a NIDCAP Master Trainer. She also provides training in the Family Infant Relationship Support Training Program (FIRST). Both programs provide support to professionals who care for high-risk newborns who may have experienced altered brain pathway development due to unexpected and overwhelming sensory input in the intensive care nursery.

Marci J. Hanson, Ph.D., is Professor in the Department of Special Education at San Francisco State University (SFSU). At SFSU, Dr. Hanson is actively engaged in teaching, research, and service related to young children and their families. In addition to these responsibilities, she directs the SFSU joint doctoral program in special education with the University of California, Berkeley, and codirects the early childhood special education graduate program. She is a consultant with the child and adolescent development faculty of the Marian Wright Edelman Institute for the Study of Children, Youth, and Families at SFSU and with San Francisco Head Start.

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...