Closer look at Preemies

Our site has some helpful information regarding premature babies, information that will help after your baby comes home from the NICU, special needs resources and products for premature babies / special needs. As a parent to a former preemie (25 weeker) I know how it feels to have a premature baby in the NICU, so my thoughts and prayers are with you and your family.

Premature Birth: Coping Tips for Parents

It is important to express your feelings and fears to the NICU staff and to those close to you. Many strong feelings arise when babies arrive prematurely. These may include shock, denial, numbness, anxiety about your child's condition, guilt, self-blame, feelings of failure, and anger at God, yourselves or doctors. Many parents feel isolated, hopeless and helpless. Parents often regret missing out on the rest of the pregnancy, months they expected to have to finish preparing physically and emotionally for the new member(s) of their family. It is often hard to believe that the small child in the isolette, so different from the chubby-cheeked baby you may have imagined, is really yours. Your baby's caregivers are aware that parents have conflicting emotions, and can help you sort out your feelings. We have listed some helpful definitions.

NICU Staff

Many members of the health care team work together to care for babies in the Neonatal Intensive Care Unit (NICU). You may need some or all of them.

Pediatrician~ A doctor who has extra training in the care of babies and children. Your baby will have a pediatrician who you have chosen, or one who has been assigned. This doctor will continue to see your baby while in hospital and after discharge. This is also the doctor who will give you information about your baby and important test results.

Neonatologist~ A pediatrician who has had extra training in newborn intensive care.

Neonatal Fellow~ A pediatrician who is getting extra training in newborn intensive care - a future neonatologist.

Resident~ A doctor who is getting extra training to be a pediatrician or some other type of specialist.

Staff Nurse~ The nurse who takes care of your baby and will teach you to provide care.

Social Worker~ The person who will help you with non-medical issues, such as where to stay, getting help at home, and who provides emotional support.

Respiratory Therapist (RT)~ A person with training in the care and management of newborns with breathing problems, and is responsible for equipment such as breathing machines.

Occupational Therapist (OT)~ A person with training in baby development and feeding.

Physiotherapist (PT)~ A person with training in assessing and treating baby's lungs and helping treat movement problems.


Neonatal intensive care is an unfamiliar, sometimes frightening place. It can help to get an official welcome and tour after you've been introduced to your newborn child. Find out as much as you can about the routine: handwashing procedures, visiting hours and visitor restrictions, when nurses change shifts, and when doctors make rounds. Learn how, and from whom, you'll get updates: in person, or by phone? From the doctor, or the nurse? Give the staff your cell phone and pager number, so they can always reach you if necessary. The greatest source of stress in NICU is not the technical surroundings, but the alteration in your parenting role. You have become parents sooner than expected, with a tiny, critically ill child. You were probably separated from your child soon after delivery, traumatized by the need to hand over your baby's care to strangers--even though they are highly skilled medical experts. Your baby's appearance may provoke anxiety. Small, wrinkled, surrounded by tubes and wires, and often on a ventilator, your baby may seem to be suffering. Preemies don't give much feedback for weeks or months, and can be disturbed by parents' early attempts to touch and talk. NICU staff can teach you the best times to interact with your children--usually when they're quiet and alert. You can learn to touch them gently, and when they are medically stable, you can hold them skin-to-skin (kangaroo care). NICU staff members will help you recognize the subtle signs that show that your child is happy you're there.

When you come to visit your baby:

~Remove your rings, bracelets and watch
~Wash your hands well using the soap by the sink
~Check with your baby's nurse to see whether you need to wear a gown
~To keep your hands clean:
~Do not touch your face, hair, chairs, etc.
~Use a paper towel to touch anything that has not been washed
~Before you leave you must wash your hands again and remove your yellow gown (if you have had to wear one).

The technology of NICU is confusing. Ask for explanations of how ventilators, machines and monitors are helping your baby. Also request handouts that explain the medical jargon you'll be hearing. With time, you will learn to do more and more of your child's care, and gradually regain your expected role as a parent.


~Neonatal Unit Terminology~

Monitors: All babies are placed on a cardiac/respiratory monitor. We use the monitors to help record your babys temperature, blood pressure heart rate, and respiratory rate. Some babies are on a different monitor that evaluates oxygenation.

Warmers: A warming table is a special bed that has a temperature probe that rests on your babys skin to monitors your babys temperature. The warmer is very useful for babies that need close observation and frequent intervention.

Isolette: An isolette, or incubator, is a special plexiglass-enclosed bed that provides staff with clear observation of your baby. The isolette can provide humidity and warmth for your baby.

Apnea: Sometimes premature babies will pause in breathing. If this happens the monitors will alarm. The nurses will gently remind your baby to breath by tickling his/her feet or by using a bag and mask to provide your baby with oxygen.

Bradycardia: Monitors have certain limits for heart rate and respiratory rate. If a babys heart rate slows down, the monitor will alarm. Usually this occurs because the babys respiratory function is immature, causing the heart to respond by beating more slowly.

Nasal Cannula: Tiny prongs that fit into your babys nose that provide oxygen.

Oxygen Hood: A plastic bubble that fits over the babys head to allow oxygen and humidity to be given to the baby.

Umbilical Catheter: An intravenous or arterial line in the babys navel that provides nourishment when the baby is unable to eat and allows monitoring of blood pressure. Blood specimens for lab work can be drawn from these lines as well.

Respirator: A machine that will provide oxygen and breathes for your baby until he/she can breathe independently.

Bilirubin Lamp: A special light that helps babies with jaundice. Babies wear eye protection when under the light.

Endotracheal Tube: A small tube that is inserted in the babys mouth or nose to the trachea or windpipe. The endotracheal tube is connected to a ventilator.

Gavage: A tube feeding. A very small tube is placed in the babys mouth or nose and goes down to the stomach. Formula or breast milk is then gravity fed or continuously fed to the baby. This method is used to provide nourishment until the baby can breastfeed.

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It is common to feel that you're a visitor and not a parent, and to envy the nurse's confidence in handling and caring for your child. However, your role as a parent is unique and irreplaceable. The more you can interact physically with your child and become involved in hands-on medical care and important decisions, the more comfortable you will feel in caring for your child when he or she eventually arrives home.


Glossary of Medical Terms

Abscesses: Infections in small areas under the skin.

Alveoli: Small air sacs in the lung.

Anemia: Having too few red blood cells.

Antibiotics: Medicines use to treat infections caused by bacteria.

Apnea: A pause in breathing which lasts more than 15 seconds, during which the baby's color becomes pale or blue, or the baby's heart rate slows down.
Aspirates: Stomach contents that have not been digested. A tube in the stomach removes them before the next feeding.

Air leak: Caused when tears occur in one or more of the air sacs in the lungs and the air leaks in the tissues around the air sacs.

Bilirubin: A substance produced when the body breaks down red blood cells.

Bilirubin lights: Lights over the baby's bed which give phototherapy to treat high bilirubin levels in the baby's blood.

"Bili" blanket: A bilirubin light that is covered with a soft blanket that can be wrapped around your baby's body to treat high bilirubin levels in the baby's blood.

Blood pressure (BP) monitor: A machine that measures the baby's blood pressure either with a cuff wrapped around the baby's arm, or through a tube into one of the baby's arteries.

Bradycardia: Heart rate that is less than 100 beats per minute,

bronchopulmonary dysplasia (BPD): A chronic lung disease that occurs in babies who have had severe RDS, pneumonia, or who were extremely premature.

Cerebral palsy (CP): A medical condition that affects control of the muscles because of an injury to the brain.

Cerebral spinal fluid (CSF): The fluid that flows around the brain and spinal cord.

Chest tube: A tube that is put into the space around the lung to drain air or fluid that has collected there.

Colostrum: The breast milk that comes in during the first few days after birth. It has a higher concentration of substances that protect babies from infections.

CT Scan: A "Computerized Tomography" scan gives a 3D view of the body's internal organs and structures.

Ductus arteriosus: A blood vessel outside the heart that allows most of the blood to bypass the lungs and go to the rest of the body before birth.

Echocardiogram: A test that uses sound waves to give a picture of the baby's heart.

Electrocardiogram monitor: A monitor that measures the baby's heart rate, heart beat pattern, breathing rate and breathing pattern.

Endotracheal tube (ET tube): A tube that goes from the baby's mouth or nose into the windpipe (trachea).

Full-term baby: The baby of a mother whose pregnancy lasted 37-42 weeks.

Gavage feeding: Feeding a baby through a small tube that is placed into the stomach through the mouth or nose. Also called tube feeding.

Gestational age: The number of completed weeks of pregnancy (since the mother's first day of her last menstrual period).

Gram: A unit for measuring weight. One gram equals 1/28th of an ounce. 454 grams equals one pound.

Grunting: An "ugh" sound made by the baby with each breath.

Heel stick or prick: A tiny puncture of the skin in the baby's heel. The heel stick is made using a small, sharp instrument. The drops of blood that came out are placed in a small tube and analyzed in the lab.

Hematocrit: The percentage of red blood cells in the blood.

Hemoglobin: The part of the red blood cell that carries oxygen.

Hernia: A bulge of a loop of bowel from the abdomen into an area where it normally would not be.

Human milk fortifier (HMF): A nutrient supplement added to the breast milk to meet the special needs of preemies.

Hydrocele: A collection of fluid in the scrotal sac (by the testicle) of boys.

Hydrocephalus: Too much fluid collecting in the normal fluid spaces of the brain (ventricles).

Hyperbilirubinemia: Too much bilirubin in the blood.

Incubator: A bed for a sick baby that gives warmth.
Infant development: The mental and physical progress of baby.

Inguinal hernia: A hernia in the groin in girls and in the scrotum in boys.

Intraventricular hemorrhage (IVH): Bleeding into or around the normal fluid spaces (ventricles) within the brain.

Intravenous (IV): A needle or tube placed into a vein attached to a bag or syringe of fluid.

Intubation: An endotracheal tube or ET tube put into the baby's windpipe through the mouth (see section on equipment).

Isolette: A common term for an incubator, a bed that warms the baby.

Jaundice: Yellowing of the skin due to a build up of a substance called "bilirubin" in the blood. Jaundice is treated with special lights called "bili lights" or biliblanket which help the baby's body break down the bilirubin.
Laser therapy: A treatment using high energy in a beam of light.

Lanugo: Fine, soft, downy hair that covers a baby in the womb from about the 4th or 5th month and disappears toward full-term. It is still present on some preemies.

Meningitis: Infection in the fluid that surrounds the brain.
Monitors: Machines that continuously measure specific things about the baby, such as the heart beat or the oxygen level.

MRI: Magnetic Resonance Imaging. They can give detailed pictures of the body's organs and structures.

Nasal CPAP: A small amount of pressure is given by a ventilator through little tubes that fit into the baby's nostrils.
Nasal flaring: Widening of the baby's nostrils with each breath.

Nasal prongs/cannula: A small soft tube placed into the nostrils that give extra oxygen.

Necrotizing enterocolitis (NEC): An inflammation in the bowel wall, which can sometimes result in a hole in the bowel wall or death of part of the bowel.

Neonatal: A term meaning new born.

Nervous system: The brain and nerves that connect it with all parts of the body.

NG feeding: NG stands for "nasogastric" which means "going from the nose to the stomach". Feedings are given through a slender tube passed into one nostril and down into the stomach. The term may be used when the tube is actually put in through the mouth. This is usually referred to as OG feeding or "Orogastric".

Open bed: An incubator that is open at the top to make it easier to see and touch the baby.

Oxygen saturation monitor: This machine measures the oxygen in the baby's blood.

Patent ductus arteriosus (PDA): A ductus arteriosus that has remained open after birth.

Periventricular leukomalacia (PVL): Softening of the brain near the fluid spaces (ventricles).

Phototherapy: Blue or white lights placed over the baby's bed, which help break down extra bilirubin in the blood.

Pneumomediastinum: Air is trapped in the middle part of the chest.

Pneumonia: An infection in the lung.

Pneumothorax: Air is trapped inside the chest between the chest wall and the lung, causing the lung to collapse.

Premature formulas: Special formulas designed to meet the needs of preemies.

Premature infant (preemie): A baby born before being in the womb at least 37 weeks. The word premature refers to something that happens before it is supposed to.

Pulmonary interstitial emphysema (PIE): Air is trapped between the smallest air sacs of the lung and the smallest air passages.

Red blood cells: Cells in the blood that pick up oxygen from the lungs and carry it to all the tissues of the body.

Respiratory distress syndrome (RDS): A lung disease of preterm babies caused by not having enough surfactant in the lungs to keep the air sacs (alveoli) open to allow air to move in and out.
Retractions: Pulling in of the ribs and center of the chest with each breath.

Retina: The inner lining of the eye.

Retinopathy of prematurity (ROP): Abnormal growth of the blood vessels in the baby's eye.

Rooting: Head and mouth movements made by a baby searching for a nipple to suck on. The baby makes small quick side-to-side movements of his/her head with an open mouth.

Sepsis: Generalized infection, or infection in the blood.

Septic work-up: A series of tests looking for bacteria in the blood, urine, spinal fluid and lungs.

Seizures: A brief period of too much nerve activity. The body tenses up, and the baby may lose consciousness for a few moments.

Surfactant: A slippery substance in the lungs which spreads like a film over the air sacs (alveoli) to keep them open so that air can move in and out.

Temperature probe: A coated wire attached to the baby's skin to measure the temperature. It makes sure the heater keeps the baby warmed at the same temperature all the time.

Total parenteral nutrition (TPN): Fluid containing sugar, vitamins, mineral, protein and fat given IV to provide the baby with nutrition.

Transcutaneous monitor: A machine that is used to measure oxygen and carbon dioxide levels in the baby's blood by means of a small circular probe attached to the skin.

Transfusion: Giving fluid such as blood into a vein through an IV.

Ultrasound: A kind of imaging study that uses sound waves to produce a picture of structures inside the body.

Umbilical artery or vein catheter: A small tubing threaded into the baby's artery or vein in the belly button (umbilicus), used to give fluids, medicines, nutrition, and to take blood samples.

Umbilical cord: The cord connecting the baby to the mother's placenta before birth.

Umbilical hernia: A hernia in the area of the umbilical cord or belly button.

Umbilicus: The belly button.

Urinary tract infection (UTI): Infection in the urine.

Ventilator: A breathing machine that gives air and oxygen into the baby's lungs.

Ventricles: In the brain, they are the normal fluid spaces. In the heart, they are the two lower chambers.

Ventricular-peritoneal (VP) shunt: A tube placed into the ventricle of the brain, connected to tubing that drains fluid from the ventricles into the baby's tummy.

White blood cells: Cells in the blood that help the body fight infection.




Commonly Used Drugs

Acetaminophen - Used to treat pain or fever

Acyclovir - Used to treat Herpes virus infection

Albuterol - Used to treat wheezing or tightness in BPD

Aminophylline - Used to treat apnea; used to treat wheezing or tightness in BPD

Amphotericin B - Used to treat a fungus infection

Ampicillin - An antibiotic used to treat a bacterial infection

Betamethasone - A steroid used in moms to lower risk for RDS in their preemies

Caffeine - Used to treat apnea

Captopril - Used to treat high blood pressure

Cefazoli - An antibiotic used to treat a bacterial infection

Cefotaxime - An antibiotic used to treat a bacterial infection

Ceftazidime - An antibiotic used to treat a bacterial infection

Ceftriaxone - An antibiotic used to treat a bacterial infection

Chloral hydrate - Used for sedation (making baby more relaxed)

Chlorothiazide - Increases urine (diuretic)

Clindamycin - An antibiotic used to treat a bacterial infection

Clotrimazole - Cream used to treat fungal infection of the skin

Cimetidine - Treats or prevents stomach irritation or bleeding

Dexamethasone - A steroid used to treat or prevent BPD or given to mother before birth to lower risk for RDS and IVH

Dobutamine - Used to treat low blood pressure; helps the heart pump

Dopamine - Used to treat low blood pressure; used to increase blood flow to kidneys and gut

Epoetin alfa (Erythropoietin) - Stimulates the body to make more red blood cells

Erythromycin - An antibiotic used to treat a bacterial infection; eye ointment to prevent eye infection

Fentanyl - Narcotic used for sedation, to treat pain, or for anesthesia, depending on dose

Ferrous Sulfate - Iron supplement

Fluconazole - Used to treat a fungus infection

Furosemide (Lasix) - Increases urine (diuretic)

Gentamicin - An antibiotic used to treat a bacterial infection

Heparin - Often added to IV fluids to prevent IV from clotting

Hydralazine - Used to treat high blood pressure

Hydrochlorothiazide - Increases urine (diuretic)

Ibuprofen - Used for Pain and to treat Patent Ductus Arteriosus

Indomethacin - Used to treat a Patent Ductus Arteriosus or prevent IVH

Insulin - Lowers blood sugar

Lorazepam - Used to treat seizures; used for sedation

Metoclopramide - Used to speed up stomach emptying

Metronidazole - An antibiotic used to treat a bacterial infection

Midazolam - Used to sedate or relax the baby

Morphine - Used for pain or cause sedation

Naloxone - Used to undo the action of narcotics

Nitric Oxide - An inhaled gas used to relax the blood vessels leading to the lungs

Nystatin - Used to treat a fungus infection of the mouth or on the skin

Nafcillin - An antibiotic used to treat a bacterial infection

Palivizumab (Synagis) - Used to prevent Respiratory Syncytial Virus

Pancuronium (Pavulon) - Relaxes muscles; prevents all movement

Penicillin - An antibiotic used to treat a bacterial infection

Phenobarbital - Used to treat seizures or to relax the baby; used to prevent IVH

Phenytoin - Used to treat seizures

Ranitidine - Treats or prevents stomach ulcers or bleeding; makes stomach less acid

Silver Nitrate - Eye drops to prevent eye infection at birth

Sodium Bicarbonate - Makes blood less acid

Sodium Sulfacetamide drops - Eye drops to treat eye infection

Surfactants - Used to treat RDS

Spironolactone - Increases urine (diuretic)

Theophylline - Used to treat apnea; used to treat wheezing or tightness in BPD

Tromethamine (THAM, Tris) - Makes blood less acid

Vancomycin - An antibiotic used to treat a bacterial infection

Vecuronium - Used to relax muscles; prevents all movement

Vitamin K - Given after birth to prevent bleeding

Zidovudine (AZT) - Used to treat HIV (AIDS virus) infection

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What to do

Daily photos and updates will help the mom feel involved if she is at one hospital and her baby was transported to another.

Gentle stroking is important in helping your baby get used to you. Even before you can hold your child, you can sing and talk quietly to him or her, bring photos to put in the isolette, and provide tapes of your voices for nurses to play for your baby. Babies have heard their mother's voice while in the womb, and that sound is reassuring to them after birth.

Kangaroo skin-to-skin contact also helps the baby thrive.

Most parents rank their partner, their own parents, and health professionals as the greatest sources of support through the NICU parenting experience. Other resources also help. Many NICUs have a parent support group or classes for parents who have children currently in the unit. Other parents find that informal talks with fellow parents reduce their sense of isolation. Some hospitals have a formal parent-to-parent peer support system, in which trained veteran parents support new preemie parents through the roller-coaster months in NICU. An experienced parent is often a great source of practical suggestions and perspective. In applicable situations, groups that offer support to single or teen parents, mothers of twins, etc. can be helpful. Assistance from clergy or counselors can also be invaluable, since parents of preemies are at greater risk for depression.

Internet websites and support groups are helping a growing number of parents through their parenting challenges. Information from these sources may not always be up-to-date and accurate, so please review medical suggestions from these sites with your child's medical caregivers. Another caution needed in both Internet and in-person groups is that parents are sometimes very emotional, expressing strong opinions or feelings of anger or criticism that you can find hurtful. Good groups have a moderator who will ensure that respect for different parents' situations, feelings, decisions and values is maintained.

Parents usually feel a mixture of excitement and anxiety at the prospect of finally bringing their child home. They worry they won't be able to care for the child as well as the NICU staff. Ask a week or two before discharge about what medications and equipment will likely be needed at home. Gradually learning to manage medicines, oxygen, monitors, tube feedings, tracheostomies and other medical details will prevent you from getting overwhelmed at home. Rooming-in for one or two nights before discharge, doing all of their child's care, also boosts parents' confidence.

A thorough pre-discharge conference with doctors, nurses, therapists and social workers to discuss your concerns will also prepare you for homecoming. Review your child's typical behavior and sleep/wake patterns, feeding instructions, expected weight gain, breathing problems, risks of illness or infection in public, and signs of illness that indicate your child needs prompt medical attention. Early followup with your child's doctor within a week after discharge, and asking the NICU to forward a discharge summary of your baby's NICU stay before that visit, will ensure a smooth transition between hospital and home.


Raising a premature child is more work and less fun in the early months than raising a full-term infant. Parents initially focus on gathering practical resources to help them care for their child. Medical needs are not the only source of stress. In addition to coordinating medical care, parents may need home helpers, dependable child care or counselors. Such resources are often vital for parents who may be juggling work demands and other family members' financial, physical and emotional needs on top of their preemie child's care. About three months after discharge, most parents become less protective and concerned about medical issues, and interact more playfully with their child(ren). Finally, by an average of five months after discharge, parents finally feel they and their preemie are truly a family.

Mothers tend to be less involved in exploratory play with preemies than with full-term infants, and may feel overprotective. Maternal interactions with a preemie may not mirror the typical interactions of full-term parents till 12-18 months after discharge.

Fathers of preemies, in contrast, often participate more in their children's care during the first three months, with more positive interactions than fathers of term infants exhibit. They generally continue active involvement with their children during the first three years, and paternal attention correlates highly with preemies' later intellectual abilities.

Home health nurses, therapists or early intervention specialists may be involved in your child's care soon after he or she arrives home. These professionals coordinate services for children at risk for developmental delay. Many parents find these visits anxiety-provoking or intrusive. The thought of strangers in your home focusing on your child's weaknesses or looking for new problems might be frightening. However, their assistance can improve your child's outcome, so it's wise to take advantage of what they can offer.

Down the road . . .

Looking ahead to early childhood, many parents view their child as "special" because of their early start, yet somehow feel their child is "normal--not a typical preemie." The increased stimulation and attention derived from this attitude are good. However, excess worry about your child's vulnerability to infection or injury, the temptation to deny the existence of delays or health problems, and reluctance to set limits and discipline, present challenges for some preemie parents. Seeking support when needed helps many moms and dads avoid these parenting pitfalls.

Looking still further ahead, the prognosis for prematurely born children has never been brighter.