For Parents of Premature Infants

HEARING SCREEN

Test to examine the hearing of a newborn infant.

HEART MURMUR

A noise heard between beats of the heart. Innocent, functional heart murmurs are common and often heard in infants and toddlers.

HEEL STICK

Pricking the baby’s heel to obtain small amounts of blood for testing.

HEMOGLOBIN

A material in red blood cells that carries oxygen and contains iron.

HIGH FREQUENCY JET VENTILATOR

A special ventilator capable of breathing for a baby at rates exceeding those of a normal ventilator (420 BPM, or Breaths Per Minute).

HIGH FREQUENCY OSCILLATORY VENTILATOR

A special ventilator capable of breathing for a baby at rates exceeding those of a normal ventilator (for example, 120 - 1,320 BPM, or Breaths Per Minute).

HIGH FREQUENCY VENTILATION

A special form of mechanical ventilation, designed to help reduce complications to preemies’ delicate lungs.

HYALINE MEMBRANE DISEASE (HMD)

Another name for respiratory distress syndrome (RDS).

HYDROCEPHALUS

Abnormal accumulation of cerebrospinal fluid within the ventricles of the brain. It is sometimes known as “water on the brain.” Within the center of our brains each of us has two fluid-filled areas called cerebral ventricles. Cerebrospinal fluid is made within these ventricles and distributed over the surface of the brain and spinal cord. When the normal circulation of cerebrospinal fluid is interrupted, fluid can accumulate within the ventricles. This fluid puts pressure on the brain, forcing it against the skull and enlarging the ventricles. In infants, this fluid accumulation often results in bulging of the fontanelle (soft spot) and abnormally rapid head growth. The head enlarges because the bony plates making up the skull have not yet fused together. In preemies the most common cause of hydrocephalus is intraventricular hemorrhage.

HYPERBILIRUBINEMIA

Another name for jaundice.

I & O (INPUT & OUTPUT)

Refers to the amount of fluids given by oral feedings and/ or by IV, and the amount of fluid excreted in the urine or stools.

IDEA

An acronym for the Individuals with Disabilities Education Act, which provides grants to states to support services, including evaluation and assessment, for young children who have or are at risk of developmental delays/disabilities.

IDIOPATHIC

Something which happens spontaneously or from an unknown cause.

ILEAL PERFORATION

Puncture or hole in the last part of the small bowel (ileum). This usually occurs spontaneously in extremely premature babies. Its cause is unknown. Often an ileal perforation requires surgery to form an ileostomy and to repair the hole in the bowel. Some NICUs have reported success simply by putting a piece of drainage tubing into the abdomen to drain out the infection and let the perforation seal on its own.

INCUBATOR

Another name for an isolette.

INDIVIDUALIZED FAMILY SERVICE PLAN (IFSP)

A written statement for an infant or toddler developed by a team of people who have worked with the child and the family. The IFSP describes the child’s development levels, family information, major outcomes expected to be achieved for the child and family, the services the child will be receiving, when and where the child will receive these services, and the steps to be taken to support the transition of the child to another program.

INDOMETHIACIN

A drug sometimes given to close a patent ductus arteriosus.

INTRACRANIAL HEMORRHAGE

Bleeding within the skull. Bleeding most often occurs within the ventricles of premature infants, but it can occur anywhere within or on the outside of the brain.

INTRAUTERINE GROWTH RESTRICTION (IUGR)

A condition in which the fetus doesn’t grow as big as it should while in the uterus. These babies are small for their gestational age, and their birth weight is below the 10th percentile. IUGR can be caused by decreased blood flow to the placenta, maternal hypertension, drug use, smoking, poor weight gain, dieting during pregnancy, pre-eclampsia, alcoholism, multiple fetuses, abnormalities of the cord or placenta, prolonged pregnancy, chromosomal abnormalities, or a small placenta.

INTRAVENOUS (IV)

A catheter (small tube) placed directly through the skin into the vein in a baby’s hand, arm, foot, leg or scalp. Nutrients, fluids and medications can flow through this tube. Using an IV is a common route for delivering fluids to newborns and other patients. Babies’ veins are very fragile, so the location of the IV may need to be changed frequently.

INTRAVENTRICULAR HEMORRHAGE (IVH)

Bleeding into the ventricles (fluid-filled spaces) within the brain. All of us have two small, fluid filled ventricles in the center of our brains. These ventricles manufacture cerebrospinal fluid. The fluid-filled space within those ventricles are called the intraventricular space. The areas just outside of those ventricles are the periventricular areas. Adjacent to the outer wall of the ventricle is the germinal matrix, an area of immature nerve cells and tender blood vessels. As the preterm baby matures, the germinal matrix tissues migrate out into the substance of the brain, and the germinal matrix gradually disappears.

The tender blood vessels within the germinal matrix can rupture and bleed; this is called a germinal matrix hemorrhage or grade I intraventricular hemorrhage (IVH). The bleeding, if severe, can lead to bleeding within the ventricle itself, a grade II IVH. If there is a lot of bleeding, the ventricles can become enlarged and swollen by the blood, which is a grade III IVH. If the bleeding either involves or secondarily injures the periventricular brain tissue, it is a grade IV IVH or IVH with extension of the hemorrhage outside of the ventricular system into the brain substance.

INTUBATION

Inserting a tube into the trachea (windpipe) through the nose or mouth to allow air to reach the lungs.

ISOLETTE

Also known as an incubator, an isolette is a clear plastic, enclosed bassinet used to keep prematurely born infants warm. Preemies often loose heat very quickly unless they are put in a protected thermal environment. The temperature of the isolette can be adjusted to keep the infant warm regardless of the infant’s size or room temperature.

JAUNDICE

Also known as Hyperbilirubinemia. Jaundice comes from the accumulation of a natural waste product, bilirubin. As red blood cells and other tissues are replaced in the body, the waste products of their breakdown are normally eliminated by the liver. Bilirubin has a yellow color, and when the levels are high it stains the skin and other tissues.

A little jaundice can be expected in all newborns. If the jaundice is higher than usual, it can usually be treated with phototherapy (special lights). Phototherapy is so effective in helping the liver excrete bilirubin that elevated levels are rarely a problem. Prematurely born infants may have elevated bilirubin levels for several weeks.

KANGAROO CARE

Skin-to-skin contact between parent and baby. During kangaroo care, the baby is placed on the parent’s chest, dressed only in a diaper and sometimes a hat. The baby’s head is turned to the side so the baby can hear the parent’s heartbeat and feel the parent’s warmth. Kangaroo care is effective, but it’s limited to babies whose condition is not critical.

LANUGO

The fine, downy hair that often covers the shoulders, back, forehead, and cheeks of a prematurely born newborn. Lanugo is replaced by more normal appearing hair toward the end of gestation.

LARGE FOR GESTATIONAL AGE (LGA)

A baby whose birth weight exceeds the normal range for the gestational age.

LEAD WIRES

Wires connecting the sensors on the baby’s chest to the vital signs monitor.

LEVEL

A marker of the level of infant care a NICU can provide, usually expressed as I, IIa/IIb, or IIIa/IIIb/IIIc. Click here for an explanation of the different levels.

LOW BIRTH WEIGHT (LBW)

A baby born weighing less than 5 1/2 pounds (2,500 grams) and more than 3 pounds, 5 ounces (1,500 grams). See Very Low Birth Weight.

LUMBAR PUNCTURE (LP)

Also known as a “spinal tap,” this test involves inserting a hollow needle in between the vertebrae of the lower back to collect a sample of cerebrospinal fluid.

MAGNETIC RESONANCE IMAGING (MRI)

Imaging technique that uses powerful magnets and computers to produce a detailed picture of tissue.

MECONIUM

A dark green, sticky mucus, a mixture of amniotic fluid and secretions from the intestinal glands, normally found in infants’ intestines. It is the first stool passed by the newborn. Passage of meconium within the uterus before birth can be a sign of fetal distress. The meconium is very irritating to the lungs.

MECONIUM ASPIRATION SYNDROME (MAS)

Respiratory disease caused when babies inhale meconium or meconium-stained amniotic fluid into their lungs; characterized by mild to severe respiratory distress.

MONITOR

Machine that displays and often records the heart rate, respiratory rate, blood pressure and blood oxygen saturation of the baby. An alarm may sound if one or a number of these vital signs are abnormal. For example, in a normal infant the heart rate is usually between 120 and 180 beats per minute and oxygen saturation should be above 90%. False alarms are common, as abrupt movements can cause the monitor to register inaccurate readings—a good general rule of thumb is “Look at the baby, not the monitor.”

MORO REFLEX

A newborn reflex. The automatic response to loud noises or sudden movements in which a newborn will extend his arms and legs, arch his back, and sometimes cry out. Newborns can have this reaction even during sleep, but lose it after a few months.

MOTOR SKILLS

Gross motor skills are the movements that use the large muscles in the arms, legs, and torso, such as running and jumping. Fine motor skills are the small muscle movements used to grasp and manipulate objects, like picking up a Cheerio or using a crayon.

MULTIDISCIPLINARY

Many different areas of expertise or specialization coming together to provide comprehensive care. Examples include medicine, nursing, pharmacy, social work, physical therapy and respiratory therapy.

NASAL CANNULA

Light, flexible tube used to give supplemental oxygen to a child. Oxygen flows through two prongs extending into the nostrils.

NASOGASTRIC TUBE (NG TUBE)

Narrow, flexible tube inserted through the nostril, down the esophagus, and into the stomach. It is used to give food or to remove air or fluid from the stomach.

NEBULIZER TREATMENT

A nebulizer humidifies air and/or oxygen that is passed to the infant. At home, a nebulizer is a way of delivering medication—it transforms medicine into droplet form for inhalation. Used for a variety of lung problems.

NECROTIZING ENTEROCOLITIS (NEC)

Swelling, tenderness and redness of the intestine caused by an infection or decreased blood supply to the intestine. The seriousness of NEC varies: it may injure or destroy parts of the bowel, or it may affect only the innermost lining or the entire thickness of the bowel.

NEONATAL INTENSIVE CARE UNIT (NICU)

A special care nursery for preemies and newborn infants with severe medical complications. They are cared for by neonatologists and nurses with specialty training.

NEONATE

A term used to describe an infant during the first 30 days of life.

NEONATOLOGIST

A pediatrician who has received 4-6 years of training after medical school in preparation for treating premature or sick newborns. This is the person who usually directs your baby’s care if hospitalization in an NICU is required.

NPO

An abbreviation for a Latin term that means “nothing by mouth”—i.e., no food or water.

OMPHALOCELE

A birth defect in which the intestines (and sometimes other abdominal organs such as the liver) come through an opening in the navel.

OSTEOPENIA OF PREMATURITY (OOP)

A decrease in the amount of calcium and phosphorus in the bones. This can cause bones to be weak and brittle, and increases the risk for broken bones. Most preemies born before 30 weeks have some degree of OOP, but won’t have any physical symptoms.

Causes: during the last trimester, calcium and phosphorus are transferred from the mother to the baby so that the baby’s bones will grow, so preemies may not received enough to form strong bones. Also, the baby’s activity increases in those last 3 months, and that activity is thought to help bone development.

OOP is usually diagnosed with ultrasound, x-rays, and blood tests to check the levels of calcium, phosphorus, and a protein called alkaline phosphatase. It is most commonly treated with calcium and phosphorus supplements added to breast milk or IV fluids, special premature formulas when breast milk is not available, and Vitamin D supplements.

OXIMETER (PULSE OXIMETER)

Machine monitoring the amount of oxygen in the blood. A tape-like cuff is wrapped around the baby’s toe, foot, hand or finger. This machine allows the NICU staff to monitor the amount of oxygen in the baby’s blood without having to obtain blood for laboratory testing.

OXYGEN HOOD

A clear plastic box that fits over a baby’s head and supplies him or her with oxygen. This is used for babies who can breathe on their own, but still need some extra oxygen.

PARENTERAL NUTRITION (HYPERALIMENTATION)

Solution put directly into the bloodstream, giving necessary nutrients, such as protein, carbohydrates, vitamins, minerals, salts, and fat. Other names for this are hyperal, total parenteral nutrition (TPN) and intravenous feedings.

PATENT DUCTUS ARTERIOSUS (PDA)

The ductus arteriosus is a blood vessel connecting the pulmonary artery and the aorta. Before birth, this vessel allows the baby’s blood to bypass the lungs because oxygen is supplied by the mother through the placenta. The ductus arteriosus should close soon after birth. If it does not, it is called a patent (open) ductus arteriosus, or PDA. A PDA may be treated either with medication or surgery.

PERIODIC BREATHING

Irregular breathing pattern marked by pauses for as long as 10 to 20 seconds. This is common in both premature and full-term babies and does not usually mean there is a problem.

PERIVENTRICULAR LEUKOMALACIA (PVL)

Within our brains are two small fluid-filled areas called ventricles. Cerebrospinal fluid is made within these ventricles. Periventricular tissue is just to the right and left sides of the ventricles. The tissue gets its blood supply from the arteries just before the arteries narrow down into capillaries. If the periventricular tissue does not receive an adequate blood supply, the tissue may die. When the tissue dies, it leaves fluid in its place, which appears as a cyst. The cysts themselves are not a problem, but they represent brain tissue that has died and been replaced by fluid. PVL is the appearance of these cysts on an ultrasound, CT, or MRI scan of the head. The brain tissue that has been lost is important to the control of muscle movements in the legs and sometimes in the arms. PVL is often associated with cerebral palsy and other developmental problems.

PERSISTENT PULMONARY HYPERTENSION OF THE NEWBORN (PPHN)

High blood pressure in the lungs, which causes the small blood vessels in the lungs to become progressively narrower. It can lead to breathing problems and reduced levels of oxygen in the blood. Sometimes treated with nitric oxide, a gas naturally produced by the body that can help expand blood vessels.

PHOTOTHERAPY

Light therapy to treat jaundice. Bright blue fluorescent lights, called bililights, are placed over the baby’s incubator. Treatment usually lasts between 3-7 days.

PICC LINE

A special IV line used to provide fluids into a vein. A PICC line is usually very stable and lasts longer than a typical IV.

PNEUMOGRAM

A sleep study, monitoring the baby’s breathing and heart rate during sleep to detect any abnormal breathing patterns.

PNEUMOTHORAX

When air from the baby’s lungs leaks out into the space between the baby’s lungs and chest wall. While small leaks may cause no problems and require no treatment, larger leaks may cause serious complications such as lung collapse and may need to be repaired with surgery.

PREMATURE BABY

A baby born three or more weeks before the due date.

PULMONARY INTERSTITIAL EMPHYSEMA (PIE)

A condition occurring in infants on ventilators that results in the formation of “bubbles” around the tiny air sacs (the alveoli) of the lungs. These “bubbles” may interfere with normal lung function.

RESPIRATORY DISTRESS SYNDROME (RDS)

Respiratory problems due to lung immaturity. Respiratory distress is a much more inclusive term meaning simply that the child is having problems breathing. Respiratory distress syndrome is a specific condition that causes respiratory distress in newborn babies due to the absence of surfactant in the lungs. Without surfactant, the alveoli (air sacs) collapse when the baby breathes out. These collapsed air sacs can only be reopened with increased work at breathing. Most newborn babies do not have a normal amount of surfactant in their air sacs until 34 to 36 weeks’ gestation. However, some very premature infants (27 to 30 weeks’ gestation) will have adequate surfactant production and function and some full-term infants (37 to 40 weeks’ gestation) will not.

RESPIRATORY SYNCYTIAL VIRUS (RSV)

The most common cause of bronchiolitis in young children. Bronchiolitis is an infection of the bronchial tubes that causes rapid breathing, coughing, wheezing and sometimes, even respiratory failure, especially in the first two years of life. RSV infection and bronchiolitis is a particular risk for infants with chronic lung problems and those born prematurely.

The RSV season is usually from October to March.

RETINOPATHY OF PREMATURITY (ROP)

Scars and abnormal growth of the blood vessels in the retina, the layer of cells in the back of the eye. The retina does not mature until close to term (40 weeks gestation), so when babies are born very prematurely, the normal growth of blood vessels into the retina is altered. These abnormally growing vessels can eventually lead to disruption of the retina and the loss of eye function.

Fortunately, severe ROP is unusual and mostly found in extremely premature infants. Routine exams for ROP will be given to premature infants at risk starting at about the 5th or 6th week after birth. If severe ROP develops, there are treatments that can reduce or prevent the loss of vision. For more information and a detailed explanation of ROP, you can visit the site of The Association for Retinopathy of Prematurity and Related Diseases (ROPARD).

RETRACTION

An abnormal sucking in of the chest during breathing, indicating that the baby is working too hard to breathe.

RETROLENTAL FIBROPLASIA (RLF)

An old name for retinopathy of prematurity.

ROOM AIR

The air we normally breathe, which contains 21% oxygen. When supplemental oxygen is given for respiratory problems, it is in concentrations higher than 21%.

ROOTING REFLEX

An instinctive reflex in newborn infants that causes them to turn their head to the side when their cheek is stroked. This reflex helps infants learn how to eat. By gently stroking the cheek, your baby will turn his or her head toward you with an open mouth ready to feed.

SATS

Term for blood oxygen saturation.

SEIZURE

A “short-circuiting” of electrical impulses in the brain, resulting from a variety of causes. Seizures can generally be classified as either “simple” (no change in level of consciousness) or “complex” (when there is a change in consciousness). Seizures may also be classified as “generalized” (the baby’s whole body is affected) or “focal” (only one part or side of the body is affected).

SEPSIS

A potentially dangerous infection of the bloodstream which occurs when the body’s normal reaction to inflammation or a bacterial infection goes into overdrive. Certain lab tests, cultures, and x-rays can help diagnose this condition, which is treated with antibiotics. Also known as Systemic Inflammatory 

Response Syndrome (SIRS).

Septicaemia is sepsis of the bloodstream caused by bacteremia, which is the presence of bacteria in the bloodstream, but this term is also sometimes used to refer to sepsis in general.

SMALL FOR GESTATIONAL AGE (SGA)

A baby whose birth weight is less than the normal range for the gestational age.

SOCIAL WORKER

Trained professional who helps coordinate social services available to families and also helps families understand and use their insurance coverage. They can help families access services available through governmental and private agencies. Some social workers also act as counselors for parents undergoing personal or family stress while their baby in a NICU.

SONOGRAM

Another name for an ultrasound.

STEP-DOWN UNIT

Babies can be transferred from the NICU to this unit to continue their recovery after they are no longer acutely ill.

SURFACTANT

Surfactant is a soapy material inside the lungs of adults and mature infants that helps the lung to function. Without surfactant, the air sacs tend to collapse on exhalation. Lung surfactant production is one of the last systems to mature in an infant, which can cause the breathing problems found in preemies.

Fortunately, surfactant obtained from cows has been shown to be safe and effective in treating respiratory distress due to surfactant deficiency. The use of surfactant to treat respiratory problems in preemies is one of the most important recent medical advances in pediatrics.

SWADDLING

Securely wrapping a baby in a light blanket to soothe and/ or restrain him or her. The NICU nurses can teach you how to swaddle your baby.

SYNCHRONIZED INTERMITTENT MANDATORY VENTILATION (SIMV)

The ventilator mode where the mechanical breaths given by the ventilator are synchronized with the baby’s spontaneous (regular) breaths.

SYNCHRONIZER

Small, soft sensor attached to the infant’s abdomen and certain types of ventilators that tell the ventilator when the infant is taking a breath. It helps to match ventilator support with the infant’s own breathing efforts. When the baby starts to take a breath, the synchronizer triggers the ventilator to provide a ventilator breath to the infant. Other types of ventilators use sensors near the breathing tube to sense when the child is breathing in.

TACHYCARDIA

A faster than normal heart rate.

TACHYPNEA

A faster than normal respiratory rate.

THEOPHYLLINE

A medication used to stimulate an infant’s central nervous system. It is prescribed to reduce the incidence of apneic episodes. This is the “oral” form that can be ingested by an infant through a nipple or feeding tube. The intravenous form is known as Aminophylline.

TONE

Passive resistance to movement of the extremities is called tone. Normally infants give only a moderate amount of resistance to you when you move their extremities. The amount of tone present is one way of assessing the condition of the nervous and muscular system in an infant.

Infants with too much tone, too much resistance to passive movement, are called hypertonic and an extreme example of this is spasticity. Infants with too little tone (too little resistance to passive movement) are called hypotonic. In many cases, hypotonia can mean simply low muscle tone and increased flexibility or laxity of ligaments; in one who is severely ill it can mean an inability to sit up, crawl, walk, or eat correctly.

TONIC NECK REFLEX

A newborn reflex that resembles a fencing position. When your infant’s head is turned to the side, one arm will straighten, the opposite arm will bend, and often one knee will significantly bend. You won’t see this if your baby is crying and this reaction usually disappears between 5 to 7 months of age. Infants vary in the degree to which this reflex is obvious.

TRANSIENT TACHYPNEA OF THE NEWBORN (TTNB)

Fast breathing that slowly becomes normal. It is thought to be caused by slow or delayed reabsorption of fetal lung fluid, and is more common in babies delivered by cesarean delivery and in those who are slightly preterm.

ULTRASOUND

Imaging of body parts using sound waves. The reflected sound waves are then analyzed by computer and turned into pictures.

UMBILICAL ARTERIAL CATHETER (UAC)

Catheter (small tube) placed in a belly button artery. It is used to check blood pressure, draw blood samples and give fluids.

UMBILICAL VENOUS CATHETER (UVC)

Catheter (small tube) placed in the belly button vein. It is used to give the baby fluids and medications.

VENTILATOR (“VENT”)

A machine that assists adults or children to breathe. Lung immaturity in prematurely born infants is the most common reason for a newborn to require a ventilator.

VENTRICULOPERITONEAL SHUNT

A plastic catheter (shunt) surgically placed in the ventricle of the brain to drain spinal fluid from the brain into the abdominal cavity. Used to treat hydrocephalus.

VERY LOW BIRTH WEIGHT (VLBW)

A baby born weighing less than 3 pounds, 5 ounces (1,500 grams) and more than 2 pounds, 3 ounces (1,000 grams). See also Low Birth Weight and Extremely Low Birth Weight.

VITAL SIGNS MONITOR

A machine measuring and displaying heart rate, breathing rate, and blood pressure on a computer screen. If these vital signs become abnormal, an alarm usually sounds.

WARMER

Also known as a Radiant Warmer, this bed allows maximum access to a sick baby. Radiant heaters above the bed keep the baby warm. Generally, a baby progresses from a warmer to an isolette to an open crib before leaving the NICU.