Continuing medical care after the NICU

KEY POINTS

  • At well-baby visits, your baby’s provider checks your baby’s health and development and gives your baby vaccinations to protect him from diseases.

  • If your baby has a health condition, he may need to see other providers for care.

  • If you think your baby is sick, call his provider. If you think it’s an emergency, call 911.

  • If your baby needs medicine or medical equipment at home, learn how to give or use it correctly before your baby leaves the NICU. 

  • If your baby has developmental delays, ask his provider about early intervention services.

When does your baby need to see his health care provider?

All babies need regular medical checkups (also called well-baby visits) with their health care provider. At each visit, the provider checks your baby’s health, growth, weight and development. If your baby spent time in the newborn intensive care unit (also called NICU) after birth, these checkups are especially important to make sure your baby’s healthy and doing well. 

Take your baby’s medical file with you to her first checkup. The file includes your baby’s discharge summary and other information from the hospital. A discharge summary is a report prepared by a health care provider that tells about your baby’s care in the NICU and what treatment your baby may need after the NICU. Hospital staff may send the summary directly to the provider, or you can share it with the provider yourself.

If your baby has a medical condition, such as a birth defect, she may need ongoing care from different kinds of health care providers. Talk with your baby’s NICU providers about health care providers for your baby after the NICU. Birth defects are structural changes present at birth that can affect almost any part of the body. They may affect how the body looks, works or both. Birth defects can cause problems in overall health, how the body develops or how the body works.

Ask all your baby’s providers to keep your baby’s main provider up to date about all visits and treatments. This helps make sure that all members of your baby’s health care team have the same information. Keep your own record of any checkups, tests and treatments your baby gets. 

What should you do if your baby gets sick?

All babies get sick from time to time. But babies who were in the NICU are more likely than other babies to get infections. Watch for signs that your baby may be sick so you can get medical help right away. Signs include:

  • Eating less than usual or has other changes in appetite
  • Crying regularly or being really fussy and can’t be comforted; being less active than usual or having changes in behavior
  • Having diarrhea or stools that are loose or watery; being constipated and having fewer-than-usual stools for a few days; having blood in the urine or bloody diarrhea
  • Vomiting (more than just spit up) that lasts for more than a few hours
  • Having a temperature of 100.4 or higher and seeming more than mildly ill; having a fever with vomiting, a rash or a cough or cold that doesn’t improve or gets worse
  • Has trouble breathing or there is a change in his breathing pattern
  • Looks blue around the nose, lips or on the skin

You know your baby best. If you think something is wrong, call your baby’s provider or 911 or take him to the emergency room.

How do vaccinations help protect your baby?

All babies, including those who spend time in the NICU, need vaccinations to help protect them from serious diseases. Your baby may get vaccinations in the NICU. And he’ll get several vaccinations in the first 2 years of life. Check with your baby’s provider about a vaccination schedule for your baby. Keep a record of your baby’s vaccinations in your baby’s medical file.

If you have other children, they need their vaccinations, too. This helps prevent them from passing infections to the baby. During flu season, everyone in the family, including parents, should get a flu shot. And you and any adult who may have contact with your baby needs a Tdap vaccination to prevent the spread of tetanus, diphtheria and pertussis (also called whooping cough) to your baby. These infections can be dangerous for a baby.

How can you protect your baby from respiratory syncytial virus?

Respiratory syncytial virus (also called RSV) is a common virus that affects almost all children before age 2. Most of the time, it causes a slight cold. But for premature babies (born before 37 weeks of pregnancy), this virus can be more serious. Premature babies or babies with heart or lung problems may need medicine to keep them from getting RSV. Ask your baby’s health care provider if your baby needs this medicine.

What do you need to know about giving your baby medicine?

Some babies need to take medicine after they leave the NICU. Learn how to give your baby his medicine before he leaves the hospital. Write down all the directions. If you have questions or are worried about giving your baby medicine, tell the nurse or other NICU staff. They can show you exactly what to do so you feel comfortable and confident about giving your baby medicine. When giving your baby medicine, make sure you know:

  • Where to get the prescription filled (at a grocery store, a drug store or a pharmacy). A prescription is an order for medicine given by a health care provider.
  • How much medicine to give, how often to give it and when to stop giving it
  • If you can give the medicine before, during or after feedings
  • If the medicine needs to be refrigerated, prepared or mixed
  • What to do if your baby misses a dose
  • If your baby needs more than one medicine, if you can give them together at the same time
  • If there are side effects from the medicine and what to do if your baby has them

You also need to know:

  • What position your baby should be in to get the medicine
  • What to do if your baby spits up or vomits the medicine Keep a daily schedule or a chart to help you keep track of when you give the medicine, how much you give and if you have any problems with the medicine. Without a schedule, it's easy to forget if you've given your baby her medicine.

How can you manage medical equipment at home?

Medical equipment at home can be a lot to manage. Staying organized and planning ahead can help. Keep a list of your baby’s equipment and medical supplies, including order numbers, size and quantity. The equipment company can give you a checklist. 

If the equipment uses electricity:

  • Share information about your baby’s medical condition and equipment with your local police, fire and emergency services. If they’re called to your home for an emergency, they know what to expect.
  • Contact your utility companies to let them know your baby’s health care needs. They may have a priority list for repairing power outages or plowing snow.
  • Make a plan for power outages. Who can you stay with if your power goes out? Can you use back-up batteries with your baby’s equipment and how long will they last?

Is your baby's development on track?

At each well-baby visit, your baby’s provider checks to make sure your baby’s developing in a healthy way. Is your baby rolling over, sitting up, crawling and walking when she should? These skills are called developmental milestones. They’re skills and activities that most children can do at a certain age. Milestones include sitting, walking, talking, having social skills and having thinking skills.

Every baby is different, and your baby develops at her own pace. But most babies tend to reach certain milestones at similar ages. If your baby was premature, she may reach milestones later than babies born on time. If you’re worried about your baby’s development, tell her provider. You may need to remind the provider that your baby was born early. 

Find out if your NICU has a developmental follow-up program. This kind of program includes a team of health care providers who make sure babies are meeting their developmental milestones. If your NICU doesn’t have one, check with your baby’s provider about other programs that offer the same kind of help.

If your baby has developmental delays, ask your baby’s provider about early intervention services. Developmental delays are when a child doesn’t reach developmental milestones when expected. Early intervention services can help children from birth through age 3 learn important skills, like walking, talking, self-help skills and interacting with others. Premature babies are more likely to have developmental delays than babies born full-term.

Early intervention services often include:

  • Physical therapy to help improve a baby’s muscle strength and coordination
  • Occupational therapy to help develop a baby’s skills in moving her arms and legs; feeding and swallowing; and bonding.
  • Speech therapy to help a baby with speech and language problems. It’s also helpful to newborns with feeding problems.

To find out if your baby qualifies for early intervention services, she gets evaluated by different health care providers, including psychologists, nutritionists, and hearing and vision specialists. The evaluation lets these providers check your baby’s skills. If the providers find that your baby has or may have a development delay, your baby may qualify for services. Qualification for services is different in each state. Visit the Early Childhood Technical Assistance Center to find your state’s contact information for early intervention services.  

If your baby qualifies for early intervention services, she gets an individual family service plan (also called IFSP). The plan outlines the services that your baby gets. Your baby may get services in your home, or you may take your baby to get services.

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Last reviewed June, 2019