For five months, Julie and Peter Crooks visited their daughter, Kellie, born 17 weeks early and weighing barely a pound, in the neonatal intensive care unit (NICU) of Wesley Medical Center in Wichita, Kan.

Though already experienced parents of 2-year-old Jacob, the Crooks weren’t prepared to care for a baby as fragile as Kellie. So the nurses taught them how to change Kellie’s diapers without overstressing her, how to pump and store Julie’s breast milk for future bottle feedings and how to recognize the signs of illness. When Kellie was well enough to go home, the Crooks felt prepared.

“We were confident that we could take care of Kellie without the medical staff, but our confidence weakened when the lack of sleep hit," says Julie Crooks, a stay-at-home mother. "We had to deal with all the normal baby care, plus an apnea monitor and supplemental oxygen, and she required feedings every three to four hours.”

Parents of preemies like the Crooks, who are eager and grateful to finally take their babies home, are often surprised by how difficult the transition is, especially handling their infant’s medical care. During their daughter’s first year at home, Kellie saw seven specialists and had up to four appointments a week.

Now take the demands and stress of caring for a premature infant and double – or triple – them. For parents of premature multiples, making the move from hospital to home can be overwhelming.

Pediatricians and Specialists
To help you coordinate your babies’ follow-up care, you’ll need a pediatrician with whom you can communicate and whom you trust. This primary doctor should ensure that specialists are updated on your babies’ health.

You also need a doctor who has experience in preemie care, says Dr. Judy Bernbaum, director of the Neonatal Follow-Up Program at Children’s Hospital of Philadelphia. “In this day and age of managed care, a doctor’s time is limited, so you need someone who can recognize needs quickly,” she says.

If you live in a metropolitan area with one or more busy NICUs, your babies may be followed up with at a specialty clinic that houses some (or all) of the specialists your preemies need. There are more than 60 of these one-stop shops for preemie care in the United States. You may have the option to have your children seen for regular follow-up care or on a consulting basis in conjunction with your pediatrician.

Frequency of doctors’ visits will depend on your babies’ individual needs, but you’ll find your calendar full for at least the first year. Here is an overview of what follow-up your babies may need in addition to regular visits to your pediatrician’s office:

Eye Care
Research shows that babies born nine or more weeks before they’re due or with birth weights at 3 pounds or less are more likely to develop an eye disease called retinopathy of prematurity (ROP). Caused by an abnormal growth of blood vessels in the retina, ROP can lead to mild or severe eye or vision problems.

In most cases, ROP is diagnosed within six weeks of birth during routine hospital exams. According to Dr. Nieca Caltrider, a pediatric ophthalmologist in Colorado Springs, Colo., most ROP resolves by itself or stops with treatment.

If ROP was diagnosed in the hospital, plan for ongoing follow-up exams with a pediatric ophthalmologist until the condition is resolved. If ROP progresses and the blood vessels move outside of the retina, surgical treatment may be necessary.

Evaluations for potential problems caused by ROP, such as nearsightedness and amblyopia (lazy eye), should also be a part of routine checkups.

Ear Care
Most hospitals screen an infant’s hearing before discharge; however, if your babies weren’t tested, request a hearing evaluation immediately. Babies born early are at risk for hearing loss.

Also, be on the lookout for ear infections that could cause hearing loss. Signs include fussiness, rubbing or pulling the ears, drainage from the ears, trouble sucking, poor appetite, fever and temporary hearing loss. Preemies who were on a ventilator, who have frequent colds and who have a family history of ear infections are at greater risk.

If a hearing loss is diagnosed, your baby will most likely see a pediatric audiologist. Your child’s speech and language development should also be monitored.

If a loss has not been detected, watch for signs of hearing difficulties (not responsive to sounds, delay in babbling, starts cooing or babbling and then stops), and report any concerns to your doctor.

Babies' Breath
Lung-related illnesses are the most common medical problems in preterm infants. “About 40 percent of preemies are re-hospitalized for a respiratory illness within the first year of homecoming,” says Diane Eastman, a pediatric nurse practitioner at the High-Risk Infant Follow-Up Program at the Children’s Hospital of Iowa. That’s because preemies, particularly those born very early and very small, don’t have normal, healthy lung tissue that fights off viruses, she says.

Preemies are also at risk for contracting two serious respiratory infections: respiratory syncytial virus (RSV) and influenza (the flu).

Your pediatrician will want to see your baby at the first signs of a cold (runny nose, irritability or coughing). Early and aggressive treatment of colds is typical. You may need to stay away from public places during cold season or until your baby is healthier and bigger. Your doctor also may prescribe preventive treatments for RSV and the flu.

Running your baby to and from specialists can certainly be stressful and time-consuming. It’s been two years since Kellie Crooks came home, and her mother says she still struggles to keep up with appointments and caregiving. “But when you’ve had a preemie, you have to focus on their well-being, and you learn to let the less important things go,” she says.

Want to see more?

• Ahead of Schedule: What to Expect When Your Multiples Are Premature
• Are You Prepared for a Preemie? A Guide to Preterm Babies
• Power Dressing for Preemies: Finding Practical and Fun Fashions
• Talk about it!