Your Care Instructions

Sometimes, babies who are born early (premature) or with a heart problem or other condition have damaged lungs and have trouble breathing. This is called chronic lung disease, or bronchopulmonary dysplasia. Parts of the lungs can trap air, fill with fluid, and make extra mucus.

You may be scared and worried about your baby having a serious health problem. But most babies who have chronic lung disease survive, and many outgrow most of their lung problems. Your baby is likely to need medicines and extra feedings to help his or her lungs heal. You can do much of the care that your child needs at home.

Follow-up care is a key part of your child’s treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if your child is having problems. It’s also a good idea to know your child’s test results and keep a list of the medicines your child takes.

How can you care for your child at home?

• If your baby is taking medicine, give it exactly as prescribed. Call your doctor or nurse call line if you think your child is having a problem with his or her medicine.
• Follow your doctor's directions for giving your baby oxygen at home if it is prescribed. Your baby may get oxygen through an opening through the neck into the windpipe or trachea. This is called a tracheostomy.
• Feed your baby on demand. Babies who have chronic lung disease need extra protein and calories to heal.
  • Most babies get more nutrients if they are fed small amounts frequently.
  • Allow your baby to rest during feeding if needed.
  • Keep track of how much your baby drinks and eats.
  • Weigh your baby (or take your baby to the doctor's office to be weighed) as often as your doctor asks you to. Write down how much he or she weighs each time. This will help show if your baby is getting enough to eat.
• Try to feed and bathe your baby back-to-back or between naps to allow the baby longer periods of rest. If the baby has trouble breathing, wait to do the care until he or she is breathing more easily.
• Keep your baby away from cold air, which can make it harder for him or her to breathe.
• Keep your baby away from people who have infections such as a cold or the flu.
• Wash your hands or use hand gels or wipes that contain alcohol to clean your hands before you hold or feed your baby.
• Keep your baby away from smoke. Do not smoke or let anyone else smoke around your baby or in your house.

When should you call for help?

Call 911 anytime you think your child may need emergency care. For example, call if:

• Your baby turns blue or becomes unconscious.
• Your baby has severe trouble breathing. Signs may include the chest sinking in, using belly muscles to breathe, or nostrils flaring while your baby is struggling to breathe.

Call your doctor or nurse call line now or seek immediate medical care if:

• Your baby has signs of an upper respiratory infection, such as:
  • Fussiness.
  • Mild fever.
  • Stuffy nose.
  • Cough.
  • Trouble breathing, or wheezing.
• Your baby is fussy during feedings or will not eat.
• Your baby is losing weight or not gaining weight.

Watch closely for changes in your child's health, and be sure to contact your doctor or nurse call line if:

• Your baby has any new symptoms.