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If you have a baby who was born prematurely, you may greet the day of discharge from the hospital with a mixture of joy and anxiety. You may have waited days, weeks, or even months to take the 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, try to relax - after all, health care professionals do not send preemies home from the hospital until the babies are ready. With some preparation and planning, you will be ready, too.

Health Challenges of Premature Infant

Babies born at less than 37 weeks' gestation are considered premature, and they often begin life with serious medical challenges. These infants may need support as newborns for a number of medical issues, including breathing problems that require supplemental oxygen or a ventilator, temperature regulation, feeding problems, apnea (irregular breathing), or jaundice (which occurs when a baby's immature liver initially cannot dispose of excess bilirubin, a yellow pigment in the body produced by the normal breakdown of red blood cells). Because of these needs, premature infants may have to spend weeks or even months in a neonatal intensive care unit (NICU).

Fortunately, with support and growth, the immature organs recover and eventually are able to function independently in most cases. By the time of hospital discharge, most preterm infants do not require specialized medical care, but all continue to need good supportive care. For some infants, special medical needs persist even after discharge. To meet your infant's needs, the medical team sending your baby home will prepare a follow-up plan of medical care, which will coordinate care with the baby's pediatrician and other medical specialists as needed.

Requirements for Discharge

Before a premature baby can be discharged from the hospital, the baby must meet several basic requirements that will help to ensure good health and fewer medical problems following discharge. Some nurseries require a minimum weight for discharge, but more often the 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?

The average preemie meets these criteria 2 to 4 weeks before close to the the original due date. Infants who have had surgery, babies born with malformations, or newborns who spent weeks on breathing machines and oxygen are the most likely to stay beyond their original date.

Medical Needs After Discharge

Although most premature infants do not require specialized medical support after they are discharged from the hospital, there are certain medical considerations for some premature infants. In addition, all infants need regular medical care and evaluation. This includes routine immunizations, usually on the same schedule as that for full-term babies. Some of the more 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 the infant matures. 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 your infant just because he or she was born prematurely, until the breathing pattern reaches maturity, usually about 44 weeks post conceptional age. Doctors will decide if your baby needs a monitor; if so, anyone who will be alone with the 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. Premature infants commonly have respiratory difficulties and need supplemental oxygen or a mechanical ventilator as newborns. Most recover and do not require supplemental oxygen by the time they graduate from the NICU. However, some premature infants develop a more chronic lung condition called bronchopulmonary dysplasia (BPD), which involves scarring and inflammation in the lungs. Infants with BPD may need supplemental oxygen and medications for a prolonged period of time even after discharge. These infants can be sent home on oxygen or medications to help their lungs function better. If your baby will need oxygen after leaving the hospital, equipment for administering oxygen at home and in transit needs to be in place. Coordinating this will be done prior to discharge.

Infections. Like other organ systems, the immune system of a premature infant does not function as well as that of older children or adults. This places preemies at risk for contracting infections (especially viral ones) after discharge. Although premature babies can become infected with many different viruses, there is one infection they are particularly vulnerable to. Respiratory syncytial virus (RSV) is a common viral infection in young children, often mistaken for a cold or the flu. Although the virus causes few problems in adults and older children, in premature babies RSV can lead to severe illness, breathing problems, or even death; it is a common cause for rehospitalization among preemies.

An immunization is available to help protect infants from RSV. All preemies who were less than 32 weeks and any from 32 to 35 weeks with certain risk factors - someone smoking at home, time spent in day care, or contact with multiple children - should receive this vaccine. For premature babies who are discharged in the winter, the first dose of vaccine generally is given prior to discharge, then monthly throughout the RSV season, which runs from late fall through late winter or early spring. However, premature babies discharged at other times of the year (summer, for example) may also need immunizations once winter arrives. Some infants who were especially premature may need to receive the vaccine for a second RSV season as well. Preemies can be given the injections at home by a nurse or in the doctor's office. The vaccine does not always prevent RSV infection but can lessen its severity. Ask your baby's doctor whether your baby should receive RSV immunizations.

Preparing for Discharge

The discharge of a preemie from the hospital isn't a single event, but a process. That process is designed to assure the medical staff 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 so they can gain some experience in taking care of all of the infant's needs. Although they are apart from the nursery and gaining confidence as solo caregivers, the parents have the security of knowing that help is just down the hall.

As your preemie progresses toward discharge day, you can get ready for the big day and the weeks that follow by making the following preparations.

Check Medical Records and Insurance Coverage

As soon as possible after the birth of your baby, call your 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 baby's 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 are likely to have with the hospital and your insurance company.

Choose a Pediatrician and Make Medical Appointments

Choosing a doctor for their child is an important decision for parents and especially for parents of preemies. Do not wait until the last minute to choose a pediatrician. In addition to the usual questions, you should ask whether the doctor cares for many premature infants. Your baby's hospital doctor will tell you when to schedule the first visit with the pediatrician - commonly it is 1 to 2 weeks after discharge from the hospital. More commonly with premature babies , we ask the pediatrician to see them within the first week of discharge. The exception to this is if the pediatrician has assumed care of the infant prior to discharge from the NICU. There are a small minority of pediatricians who do this. Those may wait 2 weeks to see the baby in followup, since they already know the patient and family.

Discuss with the NICU staff whether your baby will require home nursing or visits with medical specialists other than a pediatrician. If so, ask the NICU staff for referrals and for the telephone numbers of those health care providers. In addition, your child might need to undergo routine tests, including blood, hearing, and vision tests; other tests may be scheduled as well. Make sure you understand the results of any tests and the need for studies after discharge.

Learn CPR and Receive Specialized Training

To be prepared for emergencies, consider taking a course in infant CPR before your child 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 locations.

If your baby is to be sent home with special equipment - an apnea monitor or oxygen tank, for example -training will be given to you receive training in the use of those devices until you feel confident with them. Make sure your questions about what to do if something goes wrong have been answered. 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, make a decision about circumcision. Full-term baby boys are usually circumcised before they leave the hospital; generally, the same applies to a healthy preemie.

Outfit Your Vehicles With Car Seats

Before heading home, your premature infant will need to be placed in an infant-only car safety seat with a three-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 required to keep her head upright or to move it if he or she is having trouble breathing. 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 preclude them from traveling in a traditional infant car seat. If your child has this type of breathing problem, discuss the idea of using a special restraint system with your child's neonatologist or doctor.

If your child will be on oxygen or an apnea monitor at home, you'll also need to use these devices while traveling in the car. Once these devices are 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 departure.

Because of potential breathing problems, it is generally recommended that parents limit the time a premature infant remains in a car seat to an hour or so. If you require more prolonged periods of travel, ask your pediatrician if it is appropriate for your baby.

Attend a Discharge Debriefing

Although it varies from hospital to hospital, expect a discharge debriefing sometime shortly before discharge. The main purpose of this is 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 do not hesitate to 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 underdeveloped, preemies are more susceptible to infections than other newborns are. Therefore, you need to take some precautions. Visits outside the home should be limited to the doctor's office.

Because doctors' offices commonly have several children with viral infections, try scheduling your appointment as the first of the day, or you might request to wait in an examining room instead of the main waiting room. You should discuss with your baby’s doctor how limited his/her his or her contact with other children and adults should be over the first few weeks of life.

Taking the baby to the mall, supermarket, or other crowded public places can expose her to people with infections (such as colds or flu) that may cause serious illness in premature infants. Most experts recommend not visiting public places with these young infants. The same applies for visitors to your home: if Grandma has a cold or Aunt Susie has a virus, they should not visit. In addition, nobody should smoke in your home, and all visitors should wash their hands before touching the baby. Talk to your child's doctor about specific recommendations - some family visits may need to be postponed to allow your child's immune system to grow stronger.

Babies' success at feeding and sleeping is important to their health. Most premature babies need 8 to 10 feedings a day with no more than 4 hours between each feeding - any longer and the baby may become dehydrated. Six to eight wet diapers per day show that the baby is getting enough breast milk or formula. You should expect your preemie to sleep more than a full-term baby, but to sleep for shorter intervals. All babies, including preemies, should be put to sleep on their backs to reduce the risk of sudden infant death syndrome (SIDS).

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 prior to discharge; the nursing staff can show you how. To practice kangaroo care with your infant, dress her in only a diaper in a warm room. Place the baby between the mother's breasts or in the center of the father's chest so that there is contact between the parent and child's skin. Turn your baby's head to one side so that her ear is against your heart. Research indicates that kangaroo care can enhance parent-child bonding, promote breastfeeding, and improve a preemie's health.

Special Care for Preemies

Although most premature infants do very well and grow up as healthy children without any disability, some premature infants do have special needs. Babies born very prematurely (less than 29 weeks' gestation) or those who are particularly ill as newborns may need close follow-up during their first years and even later. Very premature infants do have a heightened risk of delays in development, problems with muscular coordination, and learning problems.

Brain imaging, commonly performed in the NICU for premature infants, provides general information on potential risks for your baby, but there is no precise method for predicting how your baby will develop physically or mentally. Many factors other than prematurity, including home and school environment as well as genetics, will significantly influence growth and development. For this reason, appropriate developmental follow-up is important for very premature babies. The purpose of developmental follow-up clinics is to identify any children who have special needs and help to intervene as early as possible. Many ex-preemies continue to see specialists, including early-intervention specialists, neurologists, ophthalmologists, and physical therapists, for several years to assess the development of their vision, hearing, speech, and motor skills.

Taking Care of Yourself

You will spend a tremendous amount of time caring for your preemie during the first few months at home, but it is also important to remember to be good to yourself, and not underestimate the stress you have experienced by 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, do not underestimate the physical and emotional toll those long days in the NICU have taken.

You may experience a wide range of emotions during these first few months of your preemie’s life. If your preemie has serious medical problems you may feel angry that the baby is sick or grief 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 baby sit your other children, run errands, or clean the house so you have time to care for the baby or rest. Treat yourself well by trying to get enough rest, nutrition, and moderate exercise. Seek support and encouragement from doctors, nurses, veteran parents, support groups, or online communities. And if you are overwhelmed or depressed, do not hesitate to get professional help for yourself so you can enjoy your child's infancy.

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