Resources for Families in the NICU

Our approach to care includes parents and caregivers partnering with providers in decision-making with physicians, nurses and therapists. Social workers, chaplains and child life specialists are also central to the caregiving process.

Former Parents in the NICU

The NICU Parent Advisory Council is a group of former NICU parents who have input in the program, policy and design of the NICU. Their experience helps shape our care.

Children's National was chosen in 2005 as the region’s first hospital to offer  the March of Dimes NICU Family Support Program. The project provides information and emotional support to families throughout the time your baby is in the NICU and  during the transition to home. 

Helpful Web Resources for Premature Infant Care

High-Risk Newborn Glossary

A - F

Air leak - when air leaks through holes in the lung tissue into the spaces outside the lung airways.
Alveoli- tiny sacs that are the smallest airways of the lungs.
Asphyxia - a general term used to describe inadequate intake of oxygen by the baby.
Bilirubin - substance formed when red blood cells break down and are excreted by the liver. Too much bilirubin in the blood causes jaundice.
Bradycardia - slowing of the heart rate.
Broncho Pulmonary Dysplasia (BPD) - see chronic lung disease.
Chronic Lung Disease (Also called CLD or bronchopulmonary dysplasia) - A term for long-term respiratory problems in premature babies that results from lung injury from treatments with mechanical ventilators and oxygen.
Continuous Positive Airway Pressure (CPAP) - air or oxygen delivered under a small amount of pressure.
Cytomegalovirus (CMV) - a virus related to the herpes virus group of infections.
Dubowitz/Ballard exam - An examination used to estimate a newborn's gestational age from the baby's appearance, skin texture, motor function, and reflexes.
Electrocardiogram (ECG or EKG) - a test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias), and detects heart muscle damage.
Endotracheal Tube (ET) - a tube placed through the mouth or nose into the trachea (windpipe).
Fetal Alcohol Syndrome (FAS) - a group of abnormalities in babies born to mothers who consume alcohol during pregnancy.

G - L

Gavage Feedings - feedings given through a tube inserted in the baby's mouth or nose into the stomach.
Hemolytic Disease of the Newborn - a condition that occurs when there is an incompatibility between the blood types of the mother and baby, causing breaking down of red blood cells.
Hemorrhagic Disease of the Newborn - a bleeding problem that occurs in a newborn during the first few days of life caused by a deficiency in vitamin K.
Hyaline Membrane Disease (HMD) - see respiratory distress syndrome.
Hyperglycemia - high amounts of glucose (sugar) in the blood.
Hyperkalemia - high amounts of potassium in the blood.
Hypernatremia - high amounts of sodium (salt) in the blood.
Hypocalcemia - low calcium levels in the blood.
Hypoglycemia - low amounts of glucose (sugar) in the blood.
Intrauterine Growth Restriction (IUGR) - a term for inadequate fetal growth during pregnancy.
Intravenous (IV) - a method of giving medication or fluids directly into the vein.
Intraventricular Hemorrhage - bleeding inside the ventricles (hollow chambers) in the brain.
Jaundice - a yellow coloring of the skin and/or eyes that is caused by too much bilirubin in the blood.
Kernicterus - build up of bilirubin in the tissues of the brain.
Lactation consultant (IBCLC - International Board Certified Lactation Consultant) - a nurse or other healthcare provider specially trained to help women with breastfeeding.
Large for Gestational Age (LGA) - a term used to describe babies who are born weighing more than the usual amount for the number of weeks of pregnancy.
Low Birthweight - refers to a baby weighing less than 2,500 grams (5.5 pounds) at birth.

M - R

Meconium Aspiration - when a baby breathes in amniotic fluid containing meconium (the first bowel movement). This can occur prior to or during birth.
Necrotizing Enterocolitis (NEC) - a serious intestinal illness in babies that can cause tissue damage to the intestines.
Neonatal Abstinence Syndrome (NAS) - a term for a group of problems a baby experiences when withdrawing from drug use by the mother during pregnancy.
Neonatal Intensive Care Unit (NICU) - a special care nursery that uses advanced technology and trained health professionals to care for sick and premature newborns.
Patent Ductus Arteriosus (PDA) - a condition in which the connecting blood vessel between the pulmonary artery and the aorta in fetal circulation stays open in a newborn baby.
Periventricular Leukomalacia - softening of the white matter of the brain near the ventricles due to damage and death of brain tissue.
Pneumomediastinum - air leaks into the mediastinum (the space in the thoracic cavity behind the sternum and between the two pleural sacs containing the lungs).
Pneumopericardium - air leaks into the sac surrounding the heart.
Pneumothorax - air leaks into the space between the chest wall and the outer tissues of the lungs.
Polycythemia - a condition in which there are too many red blood cells in the blood circulation.
Premature Baby - a baby born at or before the 37th week of pregnancy.
Pulmonary Interstitial Emphysema (PIE) - air leaks and is trapped between the alveoli, the tiny air sacs.
Respiratory Distress Syndrome (Also called RDS or hyaline membrane disease or HMD) - A condition of premature infant lungs due to insufficient surfactant, a substance in the lungs that helps the air sacs stay open.
Respiratory Syncytial Virus (RSV) - an infection that causes inflammation of the lower airways and pneumonia.
Retinopathy of Prematurity (ROP) - a disorder of the blood vessels of the retina (the light sensitive part of the eye) that is common in premature babies.

 S - Z

Small for Gestational Age (SGA) - a term used to describe a newborn who is smaller than normal for the number of weeks of pregnancy.
Sudden Infant Death Syndrome (SIDS) - the sudden and unexplained death of an infant under 1 year of age.
Thrombocytopenia - a condition in which there are too few platelets (cells produced in the bone marrow that are needed for clotting).
Transient Tachypnea of the Newborn (TTN) - a mild respiratory problem of babies, characterized by rapid breathing, that begins after birth and lasts about three days.
Umbilical Artery Catheter - a tube that is placed into an umbilical artery of a sick newborn to allow fluids and medications to be given, and for blood to be drawn.
Very Low Birthweight - refers to a baby who is born weighing less than 1,500 grams (3 pounds, 4 ounces).
X-ray - a diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.