A Guide for Parents of Preemies
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When your baby arrives sooner than planned, it's considered a premature birth. You no doubt have lots of questions. You may be asking what is prematurity? Will my baby have to stay in the hospital and for how long? When can my baby go home? Will my baby need special at home? Here you'll find answers to the questions we're asked most by parents pf premature (preemie) babies.
What Is Prematurity?
Premature infants, known as preemies, come into the world earlier than full-term babies. Prematurity is when a pregnancy lasts less than 37 weeks; full-term infants are born 37 to 42 weeks after the mother's last menstrual period (LMP).
Thanks to recent medical advances, most premature babies survive. Those who are very small, though, are at greater risk for complications.
What Causes Prematurity?
Often, the cause of preterm delivery isn't known and wasn't within a mother's control. Sometimes it's caused by health conditions during pregnancy, such as gestational diabetes, hypertension, heart or kidney problems, an infection (particularly involving the amniotic membranes, or genital or urinary tracts), or bleeding due to abnormal positioning of the placenta.
Other times preterm birth can be caused by a mother's lifestyle choices, such as poor nutrition, smoking, drug use, or excessive alcohol consumption during pregnancy.
Also, early deliveries can be due to a structural abnormality or overstretching of the uterus from carrying more than one baby (twins, triplets, or more).
Who Is at Risk for Premature Delivery?
Preterm deliveries are more common in women younger than 19 or older than 40, and those with a previous early delivery. However, any pregnant woman may deliver prematurely and many who do have no known risk factors.
What Care Do Preemies Need?
Preemies have many special needs that make their care different from that of full-term infants, which is why they often begin their lives after delivery in a neonatal intensive care unit (NICU).
The NICU is an atmosphere that limits stress to the infant and meets basic needs of warmth, nutrition, and protection to ensure proper growth and development.
Premature babies lack the body fat needed to maintain their body temperature, even when swaddled with blankets. So incubators or radiant warmers keep them warm in the NICU.
Incubators are made of transparent plastic, and completely surround babies to keep them warm, decrease the chance of infection, and limit fluid loss. Radiant warmers are electrically warmed beds open to the air. These are used when the medical staff needs frequent access to the baby for care. A tiny thermometer taped to the baby's skin senses his/her body temperature and regulates the heat.
Nutrition and Growth
Premature babies have special nutritional needs because they grow at a faster rate than full-term babies and their digestive systems are immature. Neonatologists (pediatricians who specialize in the care of sick full-term and preterm infants) measure their weight in grams, not pounds and ounces. Full-term babies usually weigh more than 2,500 grams (about 5 pounds, 8 ounces), whereas premature babies weigh anywhere from about 500 grams (about 1 pound, 1 ounce) to 2,500 grams.
So, what are premature babies fed? Breast milk is an excellent source of nutrition, but premature infants are too immature to feed directly from the breast or bottle at first. Most premature infants have to be fed slowly because of their risk for necrotizing enterocolitis (NEC), an intestinal infection that primarily affects preemies.
Breast milk can be pumped by the mother and fed to the premature baby through a tube that goes from the baby's nose or mouth into the stomach. For women who can't provide breast milk (or can't provide enough of it), doctors may recommend giving the baby pasteurized human breast milk from a milk bank, which is considered a safe alternative. Formula also may be given to babies whose mothers can't provide breast milk and donor breast milk is not available.
Breast milk has an advantage over formula because it contains proteins that help fight infection and promote growth. Special fortifiers may be added to breast milk or formula because premature infants have higher vitamin and mineral needs than full-term infants.
Nearly all premature babies get extra calcium and phosphorus either by adding fortifier to breast milk or directly through special formulas for preemies. The baby's blood chemicals and minerals — such as blood glucose (sugar), salt, potassium, calcium, phosphate, and magnesium — are monitored regularly, and the baby's diet is adjusted to keep these substances within a normal range.
Some preemies who are very small or very sick cannot use their digestive systems to process food. These babies require intravenous (IV) feedings — called TPN, or total parenteral nutrition — made up of fats, proteins, sugars, and nutrients. TPN is given through a small tube inserted into a large vein through the baby's skin or umbilical stump.
What Health Problems Can Happen?
Premature infants are at risk for a number of problems, mostly because their internal organs aren't completely ready to work on their own. In general, the more premature the infant, the greater the chances of complications.
Many preemies don't have enough red blood cells (RBCs) to carry adequate oxygen to the body. This complication, called anemia, is easily diagnosed through lab tests.
Preemies may develop anemia for a number of reasons. In the first few weeks of life, infants don't make many new RBCs. Also, a baby's red blood cells have a shorter life than an adult's. And the frequent blood samples that must be taken for testing make it hard for RBCs to replenish. Some premature infants, especially very small ones, need red blood cell transfusions.
Apnea is a common health problem among premature babies. During an apnea spell, a baby stops breathing; the heart rate may decrease; and the skin may turn pale or blue. Apnea is usually caused by immaturity in the area of the brain that controls the drive to breathe. Almost all babies born at 30 weeks or less will have apnea. Apnea spells become less frequent with age.
In the NICU, all premature babies are monitored for apnea spells. Treatment can be as simple as gently stimulating the infant to restart breathing. But if apnea happens a lot, a baby may need medicine (most commonly caffeine) and/or a special nasal device that blows a steady stream of air into the airways to keep them open.
Bronchopulmonary dysplasia (BPD), or chronic lung disease, is a common lung problem among preemies, especially those weighing less than 1,000 grams (2.2 pounds) at birth. Extreme prematurity, severe respiratory distress syndrome, infections before and after birth, and prolonged use of oxygen and/or a ventilator all play a role in the development of BPD.
Preemies are often treated with medicine and oxygen for BPD. Their lungs usually improve over the first 2 years of life, but many of them continue to have asthma-like symptoms.
A common treatable condition is hyperbilirubinemia, which affects 80% of premature infants. Babies with hyperbilirubinemia have high levels of bilirubin, which is produced by the normal breakdown of red blood cells. This high bilirubin level leads to jaundice, a yellow discoloration of the skin and whites of the eyes.
Although mild jaundice is fairly common in full-term babies (about 60%), it's much more common in premature babies. Extremely high levels of bilirubin can cause brain damage, so premature infants are monitored for jaundice and treated quickly, before bilirubin reaches dangerous levels. Jaundiced infants are placed under special blue lights that help the body eliminate bilirubin. Rarely, blood exchange transfusions are used to treat severe jaundice.
Infection is a big threat to preemies because they're less able than full-term infants to fight germs that can cause serious illness. Some infections can come from the mother before, during, or after birth. Bacterial infections can be treated with antibiotics. Other medicines are prescribed to treat viral and fungal infections.
Frequent hand washing is a rule in the NICU to help prevent infection.
Low Blood Pressure
Low blood pressure (hypotension) is a relatively common complication. It can be due to infection, blood loss, fluid loss, or medicines given to the mother before delivery. It's treated with increased fluid intake or medicines. Infants who have low blood pressure due to blood loss may need a blood transfusion.
Necrotizing enterocolitis (NEC) is the most common and serious intestinal disease among preemies. It happens when tissue in the small or large intestine is injured or begins to die off. This causes the intestine to become inflamed or, in rare cases, develop a hole.
When this happens, the intestine can no longer hold waste, so bacteria and other waste products pass into a baby's bloodstream or abdominal cavity. This can make a baby very sick, possibly causing a life-threatening infection.
NEC typically affects babies born before 32 weeks gestation, but can happen in full-term infants who have health problems, like a heart defect. Babies with NEC usually develop it within the first 2 to 4 weeks of life. Treatment may involve stopping normal feedings and giving babies intravenous (IV) nutrition, draining the stomach and intestines, and/or giving antibiotics. Sometimes surgery is needed to remove a diseased portion of the intestines.
Most infants who develop NEC recover fully and do not have further feeding problems.
Patent Ductus Arteriosus
The ductus arteriosus is a blood vessel that is an essential part of fetal blood circulation, allowing blood to bypass the lungs, because oxygen for the blood comes from the mother and not from breathing air.
In full-term babies, the ductus arteriosus closes shortly after birth, but often stays open in premature babies. When this happens, excess blood flows into the lungs and can cause breathing problems and sometimes heart failure.
Patent ductus arteriosus (PDA) is often treated with medicine, which is successful in closing the ductus arteriosus in more than 80% of infants. If medical therapy fails, surgery may be required to clamp the ductus.
Respiratory Distress Syndrome
Many preemies have breathing problems. Different things can cause them, but the most common is respiratory distress syndrome (RDS).
In RDS, the baby's immature lungs don't make enough of an important substance called surfactant. Surfactant allows the inner surface of the lungs to expand properly when the infant goes from the womb to breathing air after birth. Fortunately, RDS is treatable and many infants do quite well.
When premature delivery can't be stopped, most pregnant women can be given medication just before delivery to hasten the production of surfactant in the infant's lungs and help prevent RDS. Then, immediately after birth and several times later, surfactant can be given to the baby if needed.
Most preemies who lack surfactant will need a breathing machine (or ventilator) for a while, but the use of surfactant has greatly decreased the amount of time they spend on the ventilator.
Retinopathy of Prematurity
A preemie's eyes are especially vulnerable to injury after birth. A serious complication is retinopathy of prematurity (ROP), which is abnormal growth of the blood vessels in an infant's eye.
Some cases of ROP are mild and correct themselves, but others can lead to the retina pulling away from the rest of the eye. These cases require surgery to prevent vision loss or blindness.
Preemies often need special care after leaving the NICU, sometimes in a high-risk newborn clinic or early intervention program. Besides the regular well-child visits and immunizations that all infants receive, premature infants have periodic hearing and eye exams.
Careful attention is paid to the development of the nervous system, including motor skills like smiling, sitting, and walking, and the positioning and tone of the muscles.
Speech and behavioral development also are important areas during follow-up. Some premature infants may need speech therapy or physical therapy as they grow up. Babies who had complications in the NICU may need extra care from medical specialists.
Family support is also important. Caring for a premature infant is even more demanding than caring for a full-term baby, so the high-risk clinics pay special attention to the needs of the family as a whole.
Taking your preemie home
If your baby was born prematurely, you may greet the day of discharge from the hospital with a mixture of joy and worry. You may have waited days, weeks, or even months to take your baby home. But when the day finally arrives it can be frightening to walk away from the security of the hospital nursery.
If you're anxious about caring for your preemie at home, remember that health care professionals do not send preemies home until the babies are ready. With some preparation and planning, you'll be ready, too.
Requirements for Discharge
Before being discharged from the hospital, a preemie must meet several basic requirements to ensure good health and fewer medical problems. Some nurseries require a minimum weight for discharge, but more often, the neonatal intensive care unit (NICU) staff will evaluate the baby on these three criteria:
- Can the baby maintain body temperature in an open crib for at least 24-48 hours, depending on how premature the baby was at birth?
- Can the baby take all feedings by bottle or breast without supplemental tube feedings?
- Can the baby gain weight steadily?
Most preemies meet these criteria 2 to 4 weeks before reaching their original due date. Infants who have had surgery, were born with health problems, or who spent weeks on breathing machines and oxygen are the most likely to stay beyond their original due date.
Medical Needs After Discharge
Many preemies do not need specialized medical support after leaving the hospital, but all will need regular medical care and evaluation. This includes routine immunizations, usually on the same schedule as that for full-term babies.
Common medical problems premature babies may face in the long term include:
- Apnea. Premature infants commonly have episodes of apnea, or pauses in breathing, that improve as they mature. Babies will not be discharged if the apnea causes a slow heart rate or a change in color. However, some nurseries send infants home on apnea monitors if the infants have mild apnea that does not cause a change in color or heart rate or require stimulation to make the baby breathe again. Other nurseries may monitor preemies until the breathing pattern reaches maturity, usually at about 44 weeks' post-conceptional age.
Doctors will decide if your baby needs a monitor; if so, anyone who will be alone with your infant at home will need to attend a training session on using the monitor and learn how to perform infant cardiopulmonary resuscitation (CPR).
- Other breathing problems. Preemies commonly have breathing problems and need supplemental (extra) oxygen or a mechanical ventilator. Most recover and do not require supplemental oxygen by the time they graduate from the NICU. However, some develop a more chronic lung condition called bronchopulmonary dysplasia (BPD), which involves scarring and irritation in the lungs. Infants with BPD may need supplemental oxygen and medicines for long periods even after discharge. They can be sent home on oxygen or medications to help their lungs work better.
If your baby will need oxygen after leaving the hospital, equipment for giving it at home and in transit will be arranged before discharge.
- Feeding problems. Premature infants need more nourishment because they have to catch up to the growth of full-term babies. But it's also important not to feed them too aggressively because their intestines are not fully mature. Your baby will be discharged with a feeding plan specific to his or her needs, and might need a more concentrated milk to grow well.
Some premature babies can have problems coordinating sucking, swallowing, and breathing during feeding, and temporarily need to be fed with a nasogastric tube, or NG tube (tube that passes through the nose to the stomach), or through a gastrostomy tube, or G tube (tube surgically inserted through the skin that goes directly to the stomach). In some cases, premature babies who cannot be fed through the stomach are on total parenteral nutrition (TPN) feeds given through a vein. Talk to your care team to find out the needs for your child.
- Infections. Like other body systems, the immune system of a premature infant does not work as well as that of older kids or adults. This places preemies at risk for getting infections (especially viral ones) after discharge.
Typically, medically stable preemies receive vaccines according to doctor-recommended schedules while they are in the NICU. It's important to ensure that all household members and people who will be in close contact with the baby are up to date on their pertussis immunization (through the Tdap vaccination shot) and have received their seasonal flu vaccine.
Although many different viruses can infect preemies, they're particularly vulnerable to respiratory syncytial virus (RSV), a common viral infection in young kids that's often mistaken for a cold or the flu. Although RSV causes few problems in adults and older kids, in preemies it can lead to severe illness, breathing problems, or even death, and is a common cause for rehospitalization of preemies.
A preventive medicine is available to help protect infants from RSV. Preemies born at less than 29 weeks should receive this medicine, as well as any born under 32 weeks who required extra oxygen for the first month of life.
In winter months, the first injection is generally given before discharge, then monthly throughout the RSV season, which runs from late fall through late winter or early spring. Preemies discharged at other times of the year also may need the medicine once winter arrives. Some infants who were especially premature might need it again for their second RSV season.
Preemies can be given the injections at home by a nurse or in the doctor's office. This medicine does not always prevent RSV infection but can lessen its severity. Ask your doctor whether your baby should receive preventive injections.
Preparing for Discharge
The discharge of a preemie from the hospital isn't a single event, but a process. That process is designed to ensure that the infant can survive and thrive outside the hospital, and it prepares parents to take care of the baby on their own.
Some hospitals offer parents of preemies a rooming-in period that allows them a brief stay in a hospital room with the baby to get some experience in taking care of the infant's needs. Although they're apart from the nursery and functioning as solo caregivers, the parents have the security of knowing that help is just down the hall.
As your preemie progresses, you can get ready for the big day and the weeks that follow by:
- checking medical records and insurance coverage
- choosing a pediatrician and making medical appointments
- learning CPR and receiving specialized training
- making a decision about circumcision
- outfitting your vehicles with car seats
- attending a discharge debriefing
Check Medical Records and Insurance Coverage
As soon as possible after the birth of your baby, call your health insurance company and ask to have your baby added to your policy; many insurers require that you do this within a few days of the birth.
Some insurers will provide home nursing visits for premature infants or even more extensive nursing care for infants with complex medical problems. Nursing providers and social service workers can help you determine what your insurance coverage will provide.
Also, set up a file for medical records, financial statements, and correspondence you're likely to have with the hospital and your insurance company.
Choose a Pediatrician and Make Medical Appointments
Don't wait until the last minute to choose a pediatrician. In addition to the usual questions, ask whether the doctor cares for many premature infants. If your child may be going home with equipment like a ventilator or tube feeds, ask the pediatrician about his or her experience treating kids with these special needs. If you need a recommendation for a pediatrician well versed in treating kids with special needs, ask the NICU staff for their advice.
Schedule the first visit with the pediatrician before your child goes home. Ask the NICU staff when the appointment is needed — this usually is within 2-4 days of discharge from the hospital (unless the pediatrician has assumed care of the infant prior to discharge from the NICU).
Discuss with the NICU staff whether your baby will need home nursing or visits with medical specialists other than a pediatrician. If so, ask for referrals and contact info for those health care providers. In some cases, hospitals can coordinate several specialist visits so that they can happen on the same day. Ask if this service is available for you.
Also, your baby might need a few routine tests, including blood, hearing, and vision tests. Make sure you understand the tests needed after discharge.
Appropriate developmental follow-up is also important for very premature babies. Many ex-preemies continue to see specialists — including early-intervention specialists, neurologists, ophthalmologists, and physical therapists — for several years to measure their vision, hearing, speech, and motor skills.
Learn CPR and Get Specialized Training
To be prepared for emergencies, consider taking a course in infant CPR before your baby comes home from the hospital. (CPR training is required for all parents whose children are on apnea monitors.)
Make sure your partner takes the course, as well as grandparents or other caregivers who will be alone with the baby. The NICU staff may be able to recommend a program; in some hospitals, the nursery staff actually trains parents of preemies in CPR. The American Heart Association and the American Red Cross also can provide information on training.
If your baby is to be sent home with special equipment — such as an apnea monitor or oxygen tank — you'll be trained to use it. Make sure you understand what to do if something goes wrong.
Check to see if your county or state grants preferential parking stickers to parents with children on home oxygen. Call the local rescue squad to make sure they have equipment to handle a premature infant emergency and, if you live in a rural area, make sure they know how to get to your home.
Make a Decision About Circumcision
If your baby is a boy, you'll need to decide about circumcision. Full-term baby boys usually can be circumcised before they leave the hospital; generally, the same applies to a healthy preemie.
Install Car Seats
Before heading home, your preemie will need to be in an infant-only car safety seat with a three-point or five-point harness system or a convertible car safety seat with a five-point harness system. Most car seats need to be modified with padding or head supports so that a preemie's head stays in a position that keeps the airway open. A preemie often does not have the muscle control needed to keep the head upright or to move it if he or she is having trouble breathing. Ask the NICU staff before adding any extra padding to a car seat.
As a precaution, many hospitals require that parents bring in their car seat for a test. The baby is placed in the seat and attached to a cardiopulmonary monitor that evaluates the heart and breathing.
Some babies have respiratory problems that prevent them from traveling in a traditional infant car seat. If that's the case with your baby, discuss using a special restraint system with your neonatologist or doctor.
If your baby will be on oxygen or an apnea monitor at home, you'll need to use these devices while traveling in the car. Once in the car, secure them carefully so in the event of a crash they won't be dangerous to passengers. If you have any questions about whether your vehicle is properly outfitted for the ride home, talk to the hospital staff before you leave.
Because of potential breathing problems, it's generally recommended that parents limit the time a preemie is in a car seat to an hour or so. If you'll be traveling longer than that, ask your doctor if it is OK for your baby. Once home, do not leave your baby asleep in the car seat. Instead, lay your baby on his or her back in a crib to sleep.
Attend a Discharge Debriefing
Although it varies from hospital to hospital, expect a meeting to review medical care after discharge, confirm follow-up appointments, and allow you time for questions about your baby. All debriefings should include a thorough discussion about caring for your preemie once you're home. Make sure you understand all the instructions and advice, and ask questions.
When you leave with your baby, make sure you have the telephone number for the NICU. These professionals can be a valuable resource, especially in the gap between discharge day and the baby's first doctor's appointment.
At Home With Your Baby
Expect to live quietly with your preemie at first. Because their immune systems are still developing, preemies are at risk for infections. So, you'll need to take precautions.
Here are some things to do in the early days to help your baby thrive:
- Limit visits. Visits outside the home should be limited to the doctor's office for the first several weeks, especially if your baby is discharged during the winter months. Because doctors' offices commonly have several kids with viral infections, try scheduling your appointment as the first of the day or request to wait in an examining room instead of the main waiting area. Ask the doctor how limited your baby's contact with other kids and adults should be during these first weeks.
- Avoid public places and some visitors. Most doctors recommend not visiting public places with preemies. And limit visitors to your home: anyone who is ill should not visit, nobody should smoke in your home, and all visitors should wash their hands before touching the baby. Talk to your doctor about specific recommendations — some family visits may need to be postponed to allow your little one's immune system to grow stronger.
- Put your baby to sleep on the back. Babies' success at feeding and sleeping is important to their health. Expect your preemie to sleep more than a full-term baby, but for shorter periods. All babies, including preemies, should be put to sleep on their backs to reduce the risk of sudden infant death syndrome (SIDS).
- Practice kangaroo care. Take advantage of these quiet weeks together to enjoy skin-to-skin contact, also known as kangaroo care. Most intensive care nurseries encourage parents to begin kangaroo care before discharge; the nursing staff can show you how. In a warm room at home, dress your infant in only a diaper, then place the baby on your chest and turn your baby's head to one side so that his or her ear is against your heart. Research shows that kangaroo care can enhance parent-child bonding, promote breastfeeding, and improve a preemie's health.
Taking Care of Yourself
Parents spend a tremendous amount of time caring for a preemie during the first few months at home. But it's also important to be good to yourself and not underestimate the stress of delivering earlier than expected.
Women are supposed to have 6 to 8 weeks to rest and recuperate after giving birth, but a baby's premature birth may reduce that recovery time. In addition, those long days in the NICU take a physical and emotional toll.
You might have a wide range of emotions during these first months. If your preemie has serious medical problems you may feel angry that the baby is sick or grieve for the loss of that healthy, perfect baby you dreamed of bringing home. And as with all women recovering from pregnancy, mothers of preemies may experience the hormonal shifts of baby blues or more serious postpartum depression.
To make the adjustment of living with your new baby easier, accept offers of help from family and friends — they can babysit your other children, run errands, or clean the house so you have time to care for the baby or rest.
Treat yourself well by getting enough rest, eating well, and exercising moderately. Seek support and encouragement from doctors, nurses, veteran parents, support groups, or online communities.
And if you're overwhelmed or depressed, do not hesitate to get professional help for yourself so you can fully enjoy your new baby.
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Note: All information is for educational purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor. © 1995-2018 KidsHealth® All rights reserved. Images provided by Cook Children's, The Nemours Foundation, iStock, Getty Images, Veer, Shutterstock, and Clipart.com.