Although you might feel overwhelmed by your experience in the NICU—and perhaps frustrated that you and your child have been placed in a difficult situation right at the start of your child's life—your experience can have a positive effect on you as parents once you have gone home.

If you have worked with your health care providers during the time in the NICU, then you have already participated in a level of care for your child that new parents are only starting out on. What your time in the NICU has brought you is patience and experience. It also will help you establish the beginning of an enduring bond with your child. 

You might have to bring some medical devices to help your baby transition into his or her new life at home. Your care provider will teach you how to use these devices properly, and you can always contact them if you need more training. Oxygen or constant monitoring may be ordered by the medical team and should be arranged before your discharge. These items do not mean that you are completely home-bound, but you do need to plan how you will travel if you have a fragile or medically complex baby. Learn all you can while in hospital so that you gain confidence before going home. 

Your baby may be transferred from the high risk unit to a less complex environment, and this may feel scary. However, it is intended to help you adjust to the less complex needs of your child, and learn to be their caregiver. Keep track of all that happens (journaling) to help you better become the advocate your baby needs.

Get involved in the discharge planning process, including meeting the pediatrician who will care for your baby- you want to develop a relationship in advance, by knowing where their office is, and making sure they receive the information necessary to take over medical care of your baby. Make sure you have an appointment booked for your child prior to discharge, for no more than a few days after discharge, so that this new doctor will learn about your baby and their needs prior to them requiring any urgent treatment. Your pediatrician or other members of the team will be able to help you advocate for your baby’s needs. 

In some communities, you may be able to receive support to care for your baby, especially if they have specific medical needs that require additional nursing, occupational or physical therapy supports. Some of these needs may be paid for through your existing medical coverage or private insurance (if you have it) and others may not be covered. This can be costly and you and your team will need to decide which therapy and care options are necessary to optimize your baby’s outcome. Your costs may be able to be claimed on your yearly taxes, so hold on to all of the receipts. 

Your baby may have received many tests while in hospital, and been given a variety of prognostic or diagnostic information. While it might be hard to imagine what you have learned is possible in your baby, some of the developmental challenges (physical and cognitive) that are a result of prematurity, may not be visible until months to years later. Make sure you attend your booked appointments after discharge, so that you can ensure your baby does the best that he or she can.

During this time, extra attention is paid to nervous system development, including:

• Motor skills such as smiling, sitting, and walking
• Positioning and tone of muscles
• Speech and behavioral development 

Some children who are born prematurely may require speech therapy or physical therapy later in life.

Some families may need to search hard for day care providers who can support babies and children with special needs- do your homework and make sure you have someone you can trust to meet your baby’s needs if you need to return to work. Talk to your doctor/nurse practitioner about any immunizations that are needed for your baby after discharge. Babies who were premature are at risk for becoming sick because of being born early, so speak to your provider about timing of appropriate immunizations to reduce the chance of illness. 

You may not be sure if and when your baby can attend early-learning centers or play groups- each baby is different. This is another good question to speak to your doctor or nurse practitioner about as your baby will need certain stimulation but will also need some building up of immunity before they are exposed to lots of new normal bacteria from other children.

If you have other children, especially those in school, they may be more likely to share their sickness with the baby who was born prematurely. Your baby may become quite sick with a common cold compared to your other children so keeping them away from other sick children is recommended. However you do need to balance this against being home-bound, which isn’t good for either of you.

Keep a file of information that will help you to tell your baby’s story, including discharge summaries, medication sheets, therapists reviews, and your own thoughts, to help you when you see your pediatrician or other practitioner. This often makes a visit more productive. Write down your questions and answers in order to make sure you can share it with your partner or other team members. 

Like when your baby was in hospital, you need to know that taking on primary responsibility for a child with special needs and challenges, can be draining and can be exciting. It is still as important now as it was after delivery, to take care of yourself, and find people to talk to who can be of help. You may feel very busy with all of the specific needs, but if you can’t care for yourself, you may become too sick to care adequately for your baby. Use resources like family and friends to help with food, laundry, cleaning and other tasks, especially when you first get home, so that you can focus on your baby and their needs. You will be able to take those responsibilities back on, over time, but this adjustment will be significant. 

You will often be the most knowledgeable person about your child, and be aware of how much you know about their particulars. Learn from people and teach people about your child and everyone will be better able to help you and your family. 

When considering the Internet for information, please be aware that all websites are NOT created equal. Do not take one perspective as the only one, and if you get an idea from a website, speak to your doctor/team about it, and listen to the answers- often information may not really be applicable to your baby or family. 

It will be an adventure once you go home, but, if you are equipped for the challenge, you and your baby will be able to grow together and have the best outcomes possible. Your baby depends on you to be their advocate, so take that role on the best way you can! 

ABDUCTION

The movement of an arm or leg away from the midline of the body. Abduction of both legs spreads the legs. The opposite of abduction is adduction; adduction of the legs brings them together.

ACIDOSIS

A condition caused by the accumulation of waste acids in the body. These acid products may result from breathing problems – respiratory acidosis; or poor function in other systems – metabolic acidosis.

ADJUSTED AGE

Also known as “corrected age.” This is your child’s chronological age minus the number of weeks he or she was born early. For example, if your 9-month-old was born 2 months early, you can expect him or her to look and act like a 7-month old. Usually you can stop age-adjusting by the age of 2 or 3.

AMINOPHYLLINE

A medication used to stimulate an infant’s central nervous system. It is prescribed to reduce the incidence of apneic episodes. This is the intravenous form; the oral form is known as Theophylline.

ANEMIA

A condition in which the red blood cells in the blood—measured by a hematocrit, or “crit”—are lower than normal. Red blood cells carry oxygen and carbon dioxide to and from tissue

APGAR SCORE

A numerical summary of a newborn’s condition at birth based on five different scores, measured at 1 minute and 5 minutes. (Additional measurements are made every five minutes thereafter if the score is less than 7 at five minutes, until the score reaches 7 or greater.) Premature infants generally have lower scores than full-term infants, but the Apgar score does not accurately predict future development.

APNEA

Cessation of breathing lasting 20 seconds or longer. Also known as an apneic episodes or apneic spells. It is common for premature infants to stop breathing for a few seconds. They almost always restart on their own, but occasionally they need stimulation or drug therapy to maintain regular breathing. The heart rate often slows with apnea; this is called bradycardia. The combination of apnea and bradycardia is often called an A&B spell.
 Apnea gradually becomes less frequent as premature infants mature and grow. There is no relationship between apnea and sudden infant death syndrome (SIDS).

APPROPRIATE FOR GESTATIONAL AGE (AGA)

A baby whose birth weight falls within the normal range for his or her gestational age.

ASPIRATION

1. The accidental sucking in of food particles or fluids into the lungs.

2. Removal of a sample of fluid and cells through a needle.

BETHAMETHASONE

A steroid medication given to the mother before birth to help the baby’s lungs mature more quickly. It is most effective if it is given more than 24 hours before delivery. Betamethasone also helps intestines, kidneys and other systems to mature.

BILIRUBIN

Yellow chemical that is a normal waste product from the breakdown of hemoglobin and other similar body components. The placenta clears bilirubin from the fetus’s blood, but after delivery this task belongs to the infant. It usually takes a week or more for the newborn’s liver to adjust to its new workload. When bilirubin accumulates, it makes the skin and eyes look yellow, a condition called jaundice.

BLOOD GAS

A blood test used to evaluate an infant’s level of oxygen, carbon dioxide and acid. This test is significant because it helps to evaluate an infant’s respiratory status.

BLOOD UREA NITROGEN (BUN)

A blood test that measures how well the kidneys are functioning.

BRADYCARDIA (“BRADY”)

An abnormally low heart rate. Bradys are usually associated with apnea in premature infants. During these spells the infant will stop breathing for at least 15 seconds and the heart rate will start to slow, also referred to as an “A&B spell.” Gentle touching or other stimulation almost always restarts the breathing and increases the heart rate. Medications (theophylline or caffeine) are often used to treat these spells in newborn babies.

BRAINSTEM AUDITORY EVOKED RESPONSE TEST

A hearing test where a tiny earphone is placed in the baby’s ear to deliver sound. Small sensors, taped to the baby’s head, send information to a machine that measures the electrical activity in her brain in response to the sound. Premature babies are at increased risk of hearing problems, but early detection can prevent speech and language problems.

BRO VIAC^® CATHETER

Type of intravenous tube used to give fluids and medications to infants or children. The catheter is placed in a major vein of the body during surgery. The BROVIAC^® catheter is designed to stay in place over many months, if needed. There are other types of catheters with different names, all of which serve the same function.

CAFFEINE CITRATE (CAFCIT^®)

A central nervous system stimulant that’s used to treat certain breathing problems in some preemies. This medication is given intravenously.

CASE MANAGER

A patient advocate who coordinates health services and home care with the insurance company during hospitalization.

CENTRAL VENOUS LINE (CVL)

The central venous line (CVL), also called the central venous catheter (CVD), is a type of intravenous tube used to give fluids and medications. The catheter is placed in a major vein of the body during surgery or by insertion through a vein in the arm, leg or head.

CEREBRAL PALSY (CP)

Cerebral palsy is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupts the brain’s ability to adequately control movement and posture.

“Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e., it does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. CP is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not “curable” in the accepted sense, training and therapy can help improve function.

CEREBROSPINAL FLUID (CSF)

Fluid (produced by the ventricles of the brain) that circulates around the spinal column and brain.

CHARGE NURSE

The registered nurse who has general responsibility for coordinating the nursing care of all babies in a unit for a particular shift. Nursing shifts may be either 8 or 12 hours.

CONTINUOUS POSITIVE AIRWAY PRESSURE (CPAP)

Supplemental oxygen or room air delivered under pressure though either an endotracheal tube (tube that goes directly into the infant’s lungs) or small tubes or prongs that sit in the nostrils. Delivering oxygen under pressure helps keep air sacs in the lungs open and also helps maintain a clear airway to the lungs. Nasal CPAP (NCPAP) is commonly used immediately after removing the endotracheal tube to treat apnea and/or prevent the need for an endotracheal tube and ventilator.

CRIT

Slang for hematocrit, this is a test used to determine the percentage of red blood cells compared to total blood volume. It is commonly used to test for anemia. It is significant in that is helps show a baby’s ability to supply oxygen to his or her organs and tissues.

DEVELOPMENTAL MILESTONES

Major and minor social, emotional, physical, and cognitive skills acquired by children as they grow up.

DEVELOPMENTALLY DELAYED / DISABLED

A term used to describe infants and toddlers who have not achieved skills and abilities which are expected to be mastered by children of the same age. Delays can be in any of the following areas: physical, social, emotional, intellectual, speech and language and/or adaptive development, sometimes called self-help skills, which include dressing, toileting, and feeding. Many developmental delays can be overcome with early intervention programs.

EARLY INTERVENTION PROGRAM

Planned use of physical therapy and other interventions in the first few years of a child’s life to enhance the child’s development.

ECHOCARDIOGRAM (“ECHO”)

Ultrasound picture of the heart. This is a painless, non-invasive procedure that takes accurate pictures of almost all parts of the heart. Many preemies have a cardiac ultrasound if the doctor is looking for evidence of a patent ductus arteriosus.

EDEMA

Puffiness or swelling, usually because of fluid retention in the body tissues.

ELECTROCARDIOGRAM (ECG OR EKG)

A test that records the electrical activity of the heart. It can show abnormal rhythms (arrhythmias or dysrhythmias) or detect heart muscle damage.

ENDOTRACHEAL TUBE (ETT OR ET TUBE)

Tube placed through the mouth or nose into the throat and the child’s trachea (windpipe). This tube provides a secure pathway through which air can be circulated to the lungs.

EXTRACORPOREAL MEMBRANE OXYGENATION (ECMO)

This long name means “oxygenation outside the body.” It’s used for babies whose lungs are not working properly (i.e., transferring oxygen into the blood and removing carbon dioxide) despite other treatments. The ECMO takes over the work of the lungs so they can rest and heal. It’s similar to the heart-lung bypass used during some types of surgeries.

EXTREMELY LOW BIRTH WEIGHT (ELBW)

A baby born weighing less than 2 pounds, 3 ounces (1,000 grams). Also known as a “micropreemie.” See also Very Low Birth Weight and Low Birth Weight.

EXTUBATION

Removing the Endotracheal Tube (ET Tube) from the baby’s windpipe.

FONTANELLE

The soft spot on the top of the head. At birth the skull is made of up of several plates of bone; it is not a single, solid bone. The spaces between the bone plates allow the skull to expand as the brain grows. Where four of these bony skull plates come together it forms a soft spot in the skull called a fontanelle. There is no bone in these soft spots, making these areas softer than the surrounding areas. There are usually two soft spots in the skull of a newborn, the anterior and the posterior fontanelle; both usually close by about 18 months of age.

GASTROESOPHAGEAL REFLEX (GER)

Contents on the stomach coming back up into the esophagus, which occurs when the junction between the esophagus and the stomach is not completely developed or is abnormal. GER is very common among preemies. In some babies, reflux can irritate the lining of the esophagus and cause a form of “heartburn” which causes them to become irritable and uncomfortable. Mild forms of GER are common, require no treatment, and go away on their own over a period of months. However, it is necessary to evaluate how severe the GER is and whether or not it requires treatment.

Treatment of GER may include keeping the baby upright, thickening of the feedings, giving medication to reduce stomach acid, and sometimes giving medication to increase the ability of the stomach to contract.

GAVAGE FEEDING

Feeding a baby through a nasogastric (NG) tube. Also called tube feeding.

GESTATION

The period of development from the time of fertilization of the egg, until birth. Normal gestation is 40 weeks; a premature baby is one born at or before the 37th week of pregnancy.

GRAM (GM, GM, G)

The basic unit of weight in the metric system (28 grams = one ounce).

GRASPING REFLEX

A newborn’s reflexive grab at an object, such as a finger, when it touches her hand. This grasp may be strong enough to support the infant’s own weight, but doesn’t last very long. This reflex lasts until a baby is 3 or 4 months old. Newborns have many naturally occurring reflexes.

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.