Continuing medical care after the NICU

When does your baby need to see their healthcare provider?

Your baby will get several checkups (well-baby visits) with their provider during their first year. At each visit, talk to their provider to make sure your baby’s developing in a healthy way. Are they rolling over, sitting up, crawling, and walking when they should? These skills are called developmental milestones. You may need to remind the provider that your baby spent time in the neonatal intensive care unit (NICU), because this may affect when they reach the milestones.

Take your baby’s medical file to your first visit with your baby’s provider. This file includes their discharge summary and other information from the hospital. The provider needs to know what happened during and after your baby’s birth. Hospital staff may send the summary directly to the provider.

If your baby has a medical condition, such as a birth defect, they may need ongoing care from different  healthcare providers. Find a way to keep track of your baby’s medical appointments. This may be on a calendar in your kitchen or on your phone with an alert to remind you. Decide if it’s easier to schedule a few appointments on the same day or spread them out over different days.

Ask your 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 healthcare team have the same information. Keep your own record of any checkups, tests, and treatments your baby has had. When your doctor makes a change to your baby’s care or medication, make sure this is also shared with your baby’s in-home nursing care agency and equipment company if you use these services.

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. You should call your baby’s healthcare provider if your baby:  

• Looks blue around the nose, lips, or on the skin, or is paler than usual
• Refuses to eat or doesn’t eat enough
• Throws up (which is more serious than spitting up or reflux)
• Has less than five wet diapers in a 24-hour period, or has diarrhea for more than a day
• Has a large or hard belly that they have not had before
• Has a temperature higher than 100.4 F or lower than 97 F (using a rectal thermometer)
• Has apnea or trouble breathing. Apnea is when the baby stops breathing for 15 seconds or more.

You know your baby best. If you think something is wrong, call their provider, call 911, or take your baby 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. Some babies start getting these shots while they’re in the NICU. Check with your baby’s provider about when they need their vaccinations. Keep a record of your baby’s vaccinations in your medical file for them.

If you have other children, they need their vaccinations, too. This helps keep them from passing infections to the baby. During flu season, everyone in the family, including parents, should get a flu shot. Any adult who may have contact with your baby also needs a Tdap vaccination. This vaccination helps protect against tetanus, diphtheria, and pertussis (whooping cough). If you didn't receive your Tdap vaccine during pregnancy, you can get it after you've given birth. To create a safe space for your baby, it is important for everyone who will be in contact with your baby to receive their vaccinations.

How can you protect your baby from respiratory syncytial virus (RSV)?

RSV is a common virus. It affects almost all children before they reach age 2. Most of the time, it causes a slight cold. But for preterm babies (born before 37 weeks of pregnancy), this virus can be more serious. Babies born preterm or who have heart or lung problems may benefit from a medicine to keep them from getting RSV. Ask your baby’s healthcare provider if your baby got this medicine in the NICU or if they should get it now that they’re at home.

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

Some babies go home from the NICU still taking medicines. Learn how to give your baby their medicine before they leave 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 you can get the prescription filled (at a grocery store, drug store, or pharmacy). A prescription is an order for medicine given by a healthcare provider.
• How much medicine to give, how often to give it, and when to stop giving it
• If you can give it before, during, or after feedings
• If the medicine needs to be refrigerated, prepared, or mixed
• What to do if you miss a dose
• If your baby needs more than one medicine, if you can give them together at the same time

You also need to know:

• What position your baby should be in to take the medicine
• What to do if your baby spits up or vomits the medicine
• If there are side effects from the medicine and what to do if your baby has them

To track your baby’s different medicines and when to give them, use a chart. Ask the nurse to help you make the chart.

How can you manage your baby’s medical equipment at home?

If your baby has medical equipment at home, this can feel like 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. Be sure to re-order supplies with enough time, as shipments can sometimes be delayed. Always be prepared when you leave the house, make sure you have your baby’s supplies even when you’re just going to the park.

If the equipment uses electricity:

• Share information about your baby’s medical condition with your local fire department and emergency or first responders so they know what to expect in case they’re called to your home for an emergency. Invite them to come to your home to meet you and your baby.
• Contact your utility companies to let them know your baby’s healthcare needs. They may have a priority list for repairing power outages or plowing snow.
• Make a plan for if the power goes out. Have back-up batteries and know how long they will last.

Last reviewed April 2025