a. Your baby's medical care after the NICU

Your baby will get several checkups with her provider during her first year. At each visit, talk to her provider to make sure your baby’s developing in a healthy way. Is she rolling over, sitting up, crawling and walking when she should? These skills are called developmental milestones. You may need to remind the provider that your baby spent time in the NICU, because this may affect when she reaches the milestones.

Take your baby’s medical file to your first visit with your baby’s provider. This file includes her 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.

Get your baby vaccinated. 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 she needs her vaccinations. Keep a record of your baby’s vaccinations in your medical file for her.

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. And, any adult who may have contact with your baby needs a Tdap vaccination to help prevent pertussis (also called whooping cough).

Protect your baby from RSV. RSV (also called respiratory syncytial virus) is a very common virus. It affects almost all children before they reach the age of two. Most of the time, it causes a slight cold. But, for babies who were born early, this virus can be more serious. Babies born early or who have heart or lung problems may benefit from a medicine to keep them from getting RSV. Ask your baby’s health care provider if your baby should get this medicine.

See different health care providers. If your baby has a medical condition, such as a birth defect, she may need ongoing care from different health care providers. Ask these 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 has had.

Find out if your NICU has a developmental follow-up program. This program can help make sure your baby is meeting his milestones. If your NICU doesn’t have one, check with your baby’s provider about other programs that offer the same kind of help.

Watch for signs of illness.  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.

When to call the provider.  Call your baby’s health care provider if your baby:

  • Looks blue around the nose or lips or on the skin
  • Is paler than usual
  • Refuses to eat or doesn’t eat enough
  • Is more fussy than usual
  • Is less active than usual
  • Throws up (which is more serious than spitting up or reflux)
  • Has trouble breathing or a change in his breathing pattern
  • Has less than five wet diapers in a 24-hour period
  • Has diarrhea for more than a day or has a change in bowel habits
  •  Has a temperature higher than 100.4 F or less than 97F
  • Has apnea. This is when the baby stops breathing for 15 seconds or more.
  • Just doesn’t seem “right” or well to you.

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

Learn about early intervention programs.  These are programs that provide services for babies and children who have or who are likely to have developmental delays.

For example, a baby may have a developmental delay if he can’t roll over or sit up by a certain age. Babies who were born early are more likely to have a developmental delay than a full-term baby.

Early intervention programs often include:

  • physical therapy — A therapy that helps the baby improve her muscle strength and coordination.
  • occupational therapy — A therapy that helps babies develop skills in moving their arms and legs, feeding and swallowing, and bonding. These skills will help the baby grow and develop in healthy ways.
  • speech therapy — A therapy used to help the baby with speech and language problems. This is often used to help newborns with feeding problems.

Most states provide insurance to babies who have been in the NICU to pay for visits to check for developmental delays. You or your baby’s doctor can request these services.

If your baby can get these services, an Individual Family Service Plan, also called IFSP, is created. This plan is designed to meet the specific needs of your baby and family. Someone may come to your home or you may take your baby outside the home to get these services.