Table of Contents Title Page Dedication Foreword Prologue: PART ONE - The Beginning Chapter - Prematurity 101 Can I Really Learn This? Getting Started What Does Prematurity Mean? Understanding Disability When a Baby Is Just Too Premature Chapter - Causes of Prematurity and Interventions Preterm Labor Preterm Premature Rupture of Membranes Infection Cervical Insufficiency Intrauterine Growth Restriction Pre-eclampsia High Blood Pressure Abruption Placenta Previa Antiphospholipid Antibody Syndrome Chapter - Multiple Pregnancy Nutrition Causes of Prematurity Specific to Multiples Discordant Growth Reduction The Delivery Interval Delivery Chapter - Your Delivery Anesthesia Your Delivery PART TWO - Your Premature Baby and the Hospital Chapter - The First Few Days Resuscitation Transfer Where Is My Baby Going? Who Is Caring for My Baby? Seeing Your Baby for the First Time Assimilating to Life in the Intensive Care Nursery When Can I Hold My Baby? Chapter - Prematurity and the Lungs How Our Lungs Work Lung Development and Prematurity Monitoring Oxygen Levels Causes of Low Oxygen Levels Respiratory Support Therapies to Improve Lung Function How Long Will My Baby Need Oxygen? When There Is a Problem Getting Off the Ventilator Chapter - The Cardiovascular System Cardiovascular Monitoring in the Intensive Care Nursery The Cardiovascular System and Prematurity Congenital Heart Disease Chapter - The Nervous System and Prematurity How the Nervous System Functions Prematurity and the Nervous System Neurological Evaluation Intraventricular Hemorrhage Periventricular Leukomalacia (PVL) Seizures Developmental Care Chapter - Infection in the NICU What Causes an Infection? Types of Infections Diagnosing an Infection Pregnancy-related Infections Hospital-acquired Infections When an Infection Is Severe Vaccinations Chapter 10 - Blood: Understanding Levels and Disorders Jaundice Anemia Disseminated Intravascular Coagulation (DIC) Screening Blood Tests Chapter 11 - Nutrition and Feeding in the Hospital Intravenous Nutrition Tube Feeding Feeding By Mouth Breast-feeding and Milk Supply Chapter 12 - Gastrointestinal Problems in the NICU Necrotizing Enterocolitis Constipation Reflux Chapter 13 - Vision and Hearing Vision and Your Premature Baby Retinopathy of Prematurity (ROP) Cortical Visual Impairment Hearing Effects of Noise Exposure in the NICU Sensory Processing Disorder and Noise Hearing Tests Before Discharge PART THREE - The Mind-Body Connection Chapter 14 - Emotional Health Grief Baby Blues Postpartum Depression Post-Traumatic Stress Disorder (PTSD) Chapter 15 - Medical Mindfulness Medical Mindfulness Techniques for Parents Interactive Mindfulness for Parents and Premature Babies PART FOUR - Making the System Work for You Chapter 16 - Navigating Your Health Insurance Employer-Sponsored Group Health Insurance Government-Funded Plans Dealing with Two Insurances The Nuances of Working a Health Plan Specialist Referrals Deconstructing Medical Bills Chapter 17 - Prescription Drugs Pre-authorizations, Denials, and Appeals Special Medication Issues Chapter 18 - Government and Other Assistance Programs Supplemental Security Income or SSI Women, Infants, and Children (WIC) Government Early Intervention Services School District Special Interest Groups PART FIVE - Life at Home Chapter 19 - Going Home Equipment Considerations Car Seats The Mechanics of Going Home Prescriptions Follow-up Appointments CPR Certification Home Health Transferring to a Hospital Closer to Home Chapter 20 - Primary Care Practical Points about Follow-up Care Progress Respiratory Function Eyes Ears Medications Infection Prevention Eating Appointments Growth Extras Chapter 21 - Infection Control Hand Hygiene Limit Contact Avoid Secondhand Smoke Vaccinations Other Vaccine-preventable Diseases Chapter 22 - Lungs at Home Bronchopulmonary Dysplasia (BPD) Asthma Infections Chapter 23 - Growth and Nutrition Determining Catch-up Growth Growth Impairment Nutrition Feeding Problems Oral Aversion Chapter 24 - The Preemie Gastrointestinal Tract: Constipation, Reflux, Food Constipation Reflux Food Allergies Colic Chapter 25 - Milestones and Neurological Concerns Motor Milestones Cerebral Palsy Sensory Processing Disorder Autism Spectrum Disorders Chapter 26 - Preemies Get Diaper Rash, Too Skin Care Cradle Cap Diaper Rash Eczema Sun Protection Insect Repellant Sleep Habits Plagiocephaly PART SIX - Other Things You Should Know Chapter 27 - What No One Else Will Tell You Is My Baby in the Right Hospital? Preventing Medical Errors Conflict Putting Tests into Perspective The Missed Pregnancy Experience Getting the Most Out of Your Doctor’s Appointment Epilogue Acknowledgements Contributors Appendix - Growth Charts for Boys and Girls Glossary Index Copyright Page medications and Health Maintenance Organization (HMO) Hearing Hearing loss Heart disease, congenital Heart murmurs Heart problems Heart rate increasing monitoring sepsis and Heart rate monitor Heart surgery Heart valves Heartbeat Height Hematocrit Hemoglobin Hemorrhoids Hepatitis A Hepatitis B Hepatitis C Hiatal hernia Hirschprung’s disease HIV HMO See Health Maintenance Organization Hormones H2 blockers Human milk fortifier Hydrocephalus Hydrochlorothiazide Hypertonia Hypertonic Hypoglycemia Hypotension, described Hypothyroidism Hypotonia Hypotonic Hypoxemia Hypoxia Hypoxic-ischemic encephalopathy Ibuprofen Immune system Incubators Individualized Educational Program (IEP) Individualized environmental care (IEC) Individuals with Disabilities Education Act (IDEA) Indomethacin Induction Infections bacterial blood bowel causes of diagnosing ear hospital-acquired lung pregnancy-related preventing risk of serious transfusion-related types of viral Inflammation allergies and excess Influenza Inhalers Insect repellants Intestines Intrauterine growth restriction (IUGR) Intravenous (IV) Intraventricular hemorrhage (IVH) described risks with Intubation Ipratropium IQ IUGR See Intrauterine growth restriction IVH See Intraventricular hemorrhage Jaundice Kangaroo care Kidney problems Labor monitoring premature Lactation consultants Language Lanoseprazole Last menstrual period (LMP) Late preterm, described Laxatives Lazy eye Length LES See Lower esophageal sphincter Leukotrienes Levalbuterol Liver Lower esophageal sphincter (LES) Lung damage Lung disease, chronic Lung problems risk of Lungs collapsed function of improvement for premature Lyme disease Lymph nodes Magnesium Magnesium sulfate Magnetic resonance imaging (MRI) Measles Meconium plug Medicaid premature babies and Medical bills errors with reading/interpreting Medications administering allergy antifungal anti-reflux anti-seizure brand-name cost of errors with formulary generic injectable IV non-formulary opioid pain reflux side effects of Medspan report Membranes Meningitis Mental health services Metoclopramide Microorganisms Milestones language motor Milk supply Mind-body medicine Mineral oil Miralax Misoprostol MMR (measles, mumps, rubella) vaccine Moderately preterm Monoamniotic Monochorionic/diamnionic Monochorionic/monoamnionic Mononucleosis Morphine Motor skills developing fine gross Movements asymmetry in MRI See Magnetic resonance imaging Mucus Multiple pregnancies prematurity and Mumps Muscles strengthening weak Myelin Myopia Nasal prongs Nasogastric (NG) tubes National Institutes of Health (NIH) Nebulizers Necrotizing enterocolitis (NEC) Neonatal intensive care unit (NICU) graduates of life in monitoring in noise in visiting Nervous system developing functions of immature problems with rewiring of Neurotransmitters Neutrophils Newborn Individualized Development Care and Assessment Program (NIDCAP) Nexium NICU See Neonatal intensive care unit Nifedipine Nitric oxide Noise effects of fear of sensory processing disorder and Non-stress test (NST) Nurse practitioners (NP) Nurseries Nutrition adequate blood tests and formulas and growth and height and IV lung repair and maximizing needs for problems with supporting Nystatin Occipital lobe Occupational therapist (OT), working with Occupational therapy OG tubes See Orogastric tubes Olive oil Omega-3 fatty acids Omeprazole Opthalmologists Oral aversion Orogastric (OG) tubes OT See Occupational therapist Out-of-network care Out-of-pocket costs Outcomes Oxygen carbon dioxide and concentration of home lack of need for placenta and reduction in travel and Oxygen delivery Oxygen levels drop in low monitoring Oxygen monitor Oxygen saturation Oxygen transfer Oxygen waveform, normal Oxytocin Pain controlling Palivizumab Pancreas, inflammation of Pantoprazole Paperwork health insurance Parainfluenza Parasympathetic system Patent ductus arteriosus (PDA) Patient Protection and Affordable Care Act (2010) Pelvic exam Peripheral nerves Peripheral nutrition (PN) Peripherally inserted central catheter (PICC) Peristalsis Periventricular leukomalacia (PVL) Pertussis Pervasive Developmental Disorder-Non Otherwise Specified (PDD-NOS) Petrolatum Phenobarbital Phenol Phenytoin Phototherapy Physical therapists (PT) Physical therapy PICC See Peripherally inserted central catheter Placenta delivering large multiple oxygen and problems with Plagiocephaly Pneumonia Pneumothorax Point of service plan (POS) Polio Polyhydramnios Positive end expiratory pressure (PEEP) Post-traumatic stress disorder (PTSD) Posture asymmetry in PPO See Preferred provider organization PPROM See Preterm premature rupture of the membranes Pre-authorization Pre-eclampsia Preferred provider organization (PPO) Premature delivery extremely PPROM and preparing for Prematurity causes of consequences of extreme impact of multiple pregnancies and Prepidil Prescriptions brand-name/generic breakdown of out-of-pocket maximum and paying for Preterm premature rupture of the membranes (PPROM) Prevacid Prilosec Primary care physicians (PCP) Progesterone Prostaglandins Protective eyewear Protein Proton pump inhibitors (PPIs) Protonix Pulmonary hypertension Pulse oximeters PVL See Periventricular leukomalacia Pyloric sphincter Pyloric stenosis Quadruplets Quiet time Rabeprazole Rantidine Recovery Red blood cells (RBCs) Reflex irritability Reflux caffeine and causes of esophagus and problems with treating Reglan Respiratory effort Respiratory rate Respiratory support Respiratory syncytial virus (RSV) Respiratory therapists (RT) Respiratory tract infections Resuscitation Retina Retinopathy of prematurity (ROP) eye exams and intervention with stages of RSV See Respiratory syncytial virus Rubella Rubeola virus Seborrheic dermatitis Secondhand smoke Seizures Senokot Sensory issues Sensory processing disorder (SPD) Sepsis Septostomy Shampoos SIDS See Sudden infant death syndrome Sigmoidoscopy Sildenafil Simply Thick Singulair Sinusitis Skin caring for Skin color, dusky/blotchy Sleep difficulty with habits patterns Slow-stomach emptying Smallpox vaccine Sneezing Soap Social interaction Social security Social workers paperwork and role of Sodium Sorbitol Sore throats Soy Spasms SPD See Sensory processing disorder Special education Specialists Speech issues Speech therapy Spinals Spironolactone SSI See Supplemental Security Income Steroids asthma and inhaled lung damage and Stimulation Stomach Stools blood in passage of withholding Strabismus Stress baths and cycle hormones increase in indicators of minimizing parental physical reducing Strokes Subcutaneous (SC) Sucking swallowing and Sudden infant death syndrome (SIDS) Sun protection Supplemental oxygen Supplemental Security Income (SSI) birth weight criteria for eligibility for Suppositories Surfactant Swaddling Swallowing sucking and Sweat chloride tests Swine flu, vaccination for Synagis Syphilis, screening for Tai Chi Tardive dyskinesia Temperature monitoring unstable Tetanus Theophylline Therapy Thimerosal Thyroid abnormalities hormone screens Titanium oxide Tocolytics Toe walking Tone Tonsillectomies Torticollis Total serum bilirubin (TSB) Touch Toxins Toxoid vaccine Trachea Transient evoked autoacoustic emission (TEOAE) Transpyloric tubes Triplets Trophic feeds Trunk control, developing TSH test Tube feeding Tucker sling Tummy time Twin-to-twin transfusion syndrome (TTS) Twins Tylenol Ultrasounds first-trimester monitoring transvaginal Umbilical artery Umbilical catheter Umbilical cord abnormal connection to clamping compressed tangling/knotting of Umbilical vein Unadjusted age Upper GI series Urgent care, emergency rooms and Urinary tract infection Urine cleaning away diaper rash and leaking of output/monitoring Uterus Vaccinations Varicella zoster virus (VZV) Venipuncture Ventilators Ventricles Ventriculorperitoneal (VP) shunt Very preterm, described Vicodin Viruses Vision problems with Vital signs Vitamins Vitrectomy Voice Vomiting apnea and blood in reflux and Waste products WBC count See White blood cell count Weight Weight gain appropriate problems with Weight loss West Nile Virus White blood cell (WBC) count Whooping cough Women, Infants, and Children (WIC) X-rays Xopenex Yeast Zegrid Zinc oxide Many of the designations used by manufacturers and sellers to distinguish their products are claimed as trademarks Where those designations appear in this book and Da Capo Press was aware of a trademark claim, the designations have been Copyright © 2010 by Jennifer Gunter 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 the prior written permission of the publisher For information, address Da Capo Press, 11 Cambridge Center, Cambridge, MA 02142 Library of Congress Cataloging-in-Publication Data Gunter, Jennifer The preemie primer : a complete guide for parents of premature babies—from birth through the toddler years and beyond / Jennifer Gunter ; foreword by Adam Rosenberg —1st Da Capo Press ed p cm Includes bibliographical references and index eISBN : 978-0-738-21414-6 Premature infants—Care Premature infants—Development I Title RJ250.3.G86 2010 618.92’011—dc22 2010007634 First Da Capo Press edition 2010 Published by Da Capo Press A Member of the Perseus Books Group www.dacapopress.com Note: The information in this book is true and complete to the best of our knowledge This book is intended only as an informative guide for those wishing to know more about health issues In no way is this book intended to replace, countermand, or conflict with the advice given to you by your own physician The ultimate decision concerning care should be made between you and your doctor We strongly recommend you follow his or her advice Information in this book is general and is offered with no guarantees on the part of the authors or Da Capo Press The authors and publisher disclaim all liability in connection with the use of this book Da Capo Press books are available at special discounts for bulk purchases in the U.S by corporations, institutions, and other organizations For more information, please contact the Special Markets Department at the Perseus Books Group, 2300 Chestnut Street, Suite 200, Philadelphia, PA, 19103, or call (800) 810-4145, ext 5000, or e-mail special.markets@perseusbooks.com ... Off the Ventilator Chapter - The Cardiovascular System Cardiovascular Monitoring in the Intensive Care Nursery The Cardiovascular System and Prematurity Congenital Heart Disease Chapter - The. .. break them or at least disconnect all the tubes But then I cradled them naked against my skin, and as my body provided warmth and my breathing and heartbeat more natural rhythms, their breathing... to laugh, cry, and scream at the same time The standard line from doctors is that premature babies catch up with their peers by the age of two So, we automatically assumed that all the hardships