Preface

It gives me great pleasure to present the first edition of Beyond the NICU: Comprehensive Care of the High-Risk Infant. To date, no other book has delivered practical, evidence-based strategies for health care providers caring for the NICU graduate during convalescence and after discharge. Following the convenient, user-friendly outline format that has proven to be so successful in the McGraw-Hill Lange series, Beyond the NICU has been written by true experts in the field and is delivered to you in a manner that is easy to read and provides up-to-date suggestions for improving medical and developmental outcomes in high-risk infants.

Neonatology as a specialty is ever evolving, with survival of the most premature and sickest full-term infants continuing to improve. Advances in technology and growing knowledge in this relatively new field of pediatrics has resulted in more medically fragile and developmentally at-risk infants surviving intensive care, convalescing in intermediate-level nurseries, and being discharged home to the care of their families and primary care providers. Medical students, housestaff, nurse practitioners, as well as therapists and other health care providers caring for these infants receive little training on best practice for the NICU graduate. Furthermore, parents are often underprepared to assume primary responsibility of their infant's special needs after discharge and medical providers in the community often have little experience with providing care for this at-risk population. Beyond the NICU has been written with the intention to fill that knowledge gap, to be a resource guiding the successful transition of a high-risk infant from intensive to intermediate-level nursery and, then, helping the child thrive outside of the hospital and in the home environment.

Beyond the NICU is divided into four primary sections. Section I, the introduction, provides invaluable background information that all those caring for high-risk infants should consider. A medical historian presents the interesting story of how the NICU graduate evolved. This is followed by a primary care pediatrician's suggestions for the role of the PCP and an expert in neonatal follow-up care outlines a new model of care—the transitional medical home—when caring for these babies through discharge and during those critical first months at home for the medically fragile infant. We are thrilled to then provide you with the family perspective, asking parent representatives from leading children's hospitals across the United States, “What do you wish your doctors and nurses had understood following your NICU stay?”

Sections II and III break down the medical issues of premature and sick term infants, focusing on the chronic conditions that persist through NICU discharge. Each chapter gives management recommendations following intensive care, preparing for discharge, and in outpatient follow-up. Section IV outlines the various developmental considerations for high-risk infants, including the NICU environment, feeding, gross and fine motor skills, as well as language development. Developmental evaluations and outcomes for the NICU graduate are further discussed, with suggestions for utilization of community-based early intervention services and palliative care, when appropriate.

The appendices are assembled as a convenient resource, assisting providers with discharge planning and postdischarge troubleshooting. Questions that follow-up providers deal with every day—increasing calories, medical equipment problems, and telephone triage—are all answered here. Lastly, we are proud to present an entire appendix dedicated to coding and billing of the NICU graduate, now up-to-date with old (ICD-9) and new (ICD-10) codes so that providers are able to be compensated for the increased commitment of time and effort that these complex babies often require.

We are excited to have contributors from all over the world, including authors from all regions of the United States, China, Canada, Australia, Sweden, Israel, and the Netherlands. We feel that it is essential to have wide representation from authors setting the standards in caring for the NICU graduate regardless of geographic location. High-risk infants are universal; thus, the guidelines in caring for them should reflect what is known globally and generally becoming accepted as the standard of care.

In bringing this project together, I would like to personally thank my consultants, Drs. Ricki Goldstein, Richard Martin, and Betty Vohr, true leaders in the field of neonatology and follow-up care of the NICU graduate, as well as all individual contributors to this book. I would also like to thank my partners and colleagues at Duke, including Drs. Ron Goldberg, Patricia Ashley, and Margarita Bidegain, who along with Ricki Goldstein, have been great sources of advice and guidance in piecing this book together, in addition to forming the backbone of our Transitions medical home program. A special thank you goes out to my editors at McGraw-Hill Education: Alyssa Fried, who believed in the concept of Beyond the NICU and provided non-stop motivation along the way, and, Christie Naglieri, who kept up with the countless e-mails and ensured nothing went missing. And, finally, a sincere thank you to my loving wife, Emily, and our four wonderful children, who were great sources of encouragement over the past 2 years and tolerated my many weekends spent at the office. Without your support, Beyond the NICU would never have become a reality.