What parent doesn't have questions about caring for their newborn. And when the baby arrives early and requires an extended hospital stay before going home, the queries multiply. Following are some of the more common concerns shared by parents of preemies, answered by developmental pediatrician Suzanne Dixon.
How do I deal with the expense of all the special medical care my baby requires?
There's no doubt that medical expenses for an early or ill infant can be very high, due to the high-tech treatments and long hospital stays that may be necessary. If you have health insurance (either through a private program or Medicaid), your infant will be covered on your health care policy for the first month of life and then will need an account of her own as your dependent. Contact your insurance company as soon as possible after your baby's birth to set up dependent coverage. You should also check with your insurer to see if there are limits on total deductibles and expenditures for your family, and whether there are limits per family member. The hospital business office will assist you as well.
If you're not insured, you may be able to get financial help through state-sponsored programs for children with special needs. There may be local funds available for infants that require treatment in a neonatal intensive care unit (NICU) as well. The hospital social worker or hospital business office will help identify programs for which your child might be eligible.
If your child has a permanently disabling condition, such as Down's syndrome, she is eligible for Supplemental Security Income (SSI), part of the Social Security program. This provides funds for care beyond the strictly medical, as well as automatic Medicaid. It is a means-tested program, meaning your family income has to be below an established limit in order to qualify for full benefits. However, some states authorize funds through Medicaid to pick up uncovered health costs for qualified children who don't get a monthly stipend. This is called Medicaid wraparound and can help fill gaps in other coverage.
Don't leave the hospital without getting the assistance of the hospital social worker and business office staff. They are your partners in sorting out financial matters.
When does a premature baby get discharged? What goes into that decision?
Small infants generally go home two to four weeks before their original due date, but there are a number of exceptions. Many factors contribute to the decision to discharge a preemie. The baby's breathing, heart rate, and temperature must be steady and stable in a regular bassinet. If your baby is being monitored for apnea (breathing stoppage) or bradycardia (slow heart rate), you must know how to use the monitor and respond to alarms. Hearing screening, an eye exam, and other tests need to be completed before your baby leaves the hospital.
The baby needs to be gaining weight steadily, so you must be able to feed him by whatever means are decided: breast, bottle, gavage (feeding by a tube in the stomach), or a combination of these methods. If the baby needs medication, a regular regimen needs to be set up, and you have to be able to give the medicine accurately. Most nurseries require that parents learn infant CPR, which is a good skill for any caretaker of a small or fragile infant to have. To ease the transition from hospital to home, many hospitals offer parents the opportunity to stay one or more nights to take full care of their infant while nurses are nearby.
Your little one will need a car seat test to judge whether his breathing is okay for the ride home; if not, modifications need to be made (see "Guidelines for Very Small Passengers" in our site's article on car seats). Your home may require some modifications or special equipment installed to make it a fit palace for the prince or princess. Finally, your child's primary health care provider will need to be contacted and briefed on all matters so she or he is ready to take over.
Should I have visitors when the baby comes home?
It's exciting to share the joy of bringing home a baby! However, depending on how little or fragile your infant is, you may need to restrict or ban visitors for a while. A very small infant who's been in the hospital for weeks will need a period of quarantinewith no visitorsand an infant whose birth weight was very low may need to have restricted socializing for a year or more.
Basically, limiting visitors limits the germs to which the infant is exposed. Someone with a cough or cold, for instance, can be a big danger to a baby recovering from lung disease, a common condition for preemies. Contact with mildly ill household members and regular care providers is okay, however, since they share the same environment as the infant and aren't bringing in new germs. However, a household member with a juicy cold should limit contact if possible or practice very serious hand-washing and sneeze control.
Limiting visitors also reduces the risk of overstimulation, not only for your baby but for the whole family. Too much handling, talking, and bouncing can be stressful for young infants. You will know best how much your little one can handle. Be sure you reserve time to bond together as a family, to get to know your child, and to gently help her take on the world.
When can I stop taking my baby to the follow-up clinic?
Follow-up clinics are special clinics for children born early or those with conditions that place them at risk for physical or developmental problems. Periodic appointments are often made for infants beginning at hospital discharge. These clinic appointments supplement the regular visits to the child's primary care physician. The clinic's developmental evaluations go beyond what a health care provider can normally do in a regular office visit.
At each visit, the clinic staff will spend time with an infant and family to evaluate progress, address new situations that may have arisen, and make referrals to medical and community-based services and programs. Although the appointments can be time-consuming, that's generally not the reason some families resist going. The hard part is facing the possibility of finding a new problem when you'd much rather forget all the troubles you went through when your baby was born. But do get around those worries and show up for every appointment. Most of the time you'll receive lots of reassurance and support, plus valuable education and suggestions for programs and activities. Because some subtle learning problems or perceptual concerns don't appear until school age, it's best to keep going to the clinic until you are packing a lunch box. In fact, in my view, the most important visit is the one prior to entering kindergarten.
Should we celebrate our baby's birthday on the actual day he was born or on his due date?
Your question suggests that you suspect your child's development will more closely follow his "adjusted age" (his age as corrected for the weeks of prematurity) than his calendar age. And that is right, with some differences as described elsewhere on this site (see "All About Prematurity"). However, because he did arrive on a specific calendar date that will be his legal birthday all his life, celebrate that day. And each year, remember how far you've come. When he turns 2, start telling him his birth story. All kids like to hear all about themselves, and prematurity is part of his story. Or celebrate both days. You really can't have too many celebrations of life.
What about my older kids? This new baby takes all my time.
A fragile baby does demand extraordinary care and vigilance, and it's a challenge to meet the needs of other family membersparents as well as older children. Include older kids from the beginning by providing them with simple descriptions of what's happening, clear explanations of why your emotions may be up and down, and suggestions for what they can do to help.
When your baby is in the hospital, older children can get involved by sending drawings or pictures to put on the isolette and picking out small toys or clothes. As soon as the physical apparatus supporting your newborn has lessened enough so as not to be overwhelming, bring siblings to visit, provided they are healthy. Touching the baby, even a little, helps.
At home, be sure to involve big sisters and brothers in your care of the baby. A toddler, for example, can help by bringing you a diaper or fastening it once it's on. Spend one-on-one time with your older children every day, no matter how brief. Have someone else watch the baby while you provide exclusive attention to your older kids, rather than just handing them off to a sitter. When feeding the baby, get a basket of quiet toys for your older children so they can sit with you and occupy themselves with these special items.
Expect regressions in behavior, such as wet pants, sleep issues, and more temper tantrums; your older child is adjusting to changed circumstances, just as you are. Don't expect her to like the baby very much; from her point of view, the baby's not much fun and causes a lot of trouble. Remember to use others to fill in for you for a while so you can exercise and rest; you can't parent anyone well if you are tired and crabby. Let the house get a little messy (or hire someone to clean it), make meals simple, and limit social and work demands as much as possible to save your energy. All of these measures will help life go more smoothly for everyone in the household.
Will my next baby be premature too?
That depends on why the first infant came early. If you have no known risk factors for prematurity other than the history of a previous preemie, the chances are more than 80 percent that your next infant's birth date will be close to the due date. However, if you have irregularities of the uterus or a chronic health condition such as diabetes or kidney disease, it's very likely that you will experience another premature birth. Also, women younger than 15 or older than 35 have an increased risk of an early birth, as do those carrying twins.
Recent research suggests that many premature births are triggered by undetected infections of the urinary tract or vagina. Since we're getting better at identifying these infections and are more aggressive in monitoring women with a history of premature births, we've been able to reduce this type of premature birth.
About half the women who give birth prematurely do so for no identified cause. For these women, there is a slightly increased risk of another early birth, and extra care is needed early on in any subsequent pregnancy.