Taking your baby home after a Neonatal Intensive Care Unit (NICU) stay is exciting. Some families may also feel uneasy about the transition home, especially when their baby needs ongoing medical care.
Margaret “Katie” Hoge, M.D., Neonatologist and Developmental Behavioral Pediatrician at Children's Health℠ and Assistant Professor at UT Southwestern, shares tips and resources to support your child. She cares for families through the Thrive Program, which provides specialized primary care for NICU graduates until age 5.
“Having a comprehensive team that’s focused on NICU graduates keeps babies healthier, reduces trips to the hospital and can lower the cost of care,” Dr. Hoge says.
Tip #1: Practice before you leave the NICU
Many babies go home from the NICU with medical equipment to help them eat or breathe, or with medications they need to take at certain times. Discussing how to use any equipment or how and when to give medications can make the transition home easier.
“Our team has a ‘see one, teach one, do one’ approach,” Dr. Hoge says. “Practicing using equipment or giving medication with the care team in the NICU by your side can make you feel more comfortable when you get home.”
Tip #2: Find a pediatrician who knows your baby’s needs
Finding a pediatrician you trust – and who has experience caring for NICU graduates’ changing needs – can help make the transition home feel more manageable.
A pediatrician who understands the needs of NICU babies can help your family coordinate care, stay on track with follow-up appointments and answer questions along the way. It is also important to find a practice that is aware of the developmental needs of NICU graduates.
The Thrive Program at Children’s Health offers specialized and comprehensive primary general pediatric care and specialized neurodevelopmental care from the time a baby leaves the NICU through age 5. The program is open to any baby who was cared for in any NICU who:
Was born before 28 weeks.
Needs medical equipment like feeding or oxygen support after birth.
Or is involved in a research study aimed at improving outcomes for health and development of NICU graduates.
Tip #3: Keep up with screenings and checkups
Babies born prematurely may be at risk for breathing problems, developmental differences, feeding troubles or other health issues. Early screening can help identify any concerns and connect children with the support they need to thrive.
“Babies’ brains and bodies are incredible and resilient,” Dr. Hoge says. “With early identification of needs, there is an opportunity to reduce the effects of injuries or illnesses a child may experience in the NICU and improve health outcomes. Staying in communication with your NICU follow-up medical team can help identify needs early and connect your baby with resources to help them continue to grow and learn.”
Care for NICU graduates often focuses on:
Checking the heart and lungs to make sure they are breathing well and getting enough oxygen.
Screening for developmental delays or brain conditions like cerebral palsy (CP).
Managing feeding problems and making sure they get the nutrients they need to grow and thrive.
Addressing attention and behavioral concerns because conditions like ADHD and autism are common in babies born prematurely.
Accessing therapies and medical treatments that are helpful.
Tip #4: Try to prioritize your own mental health
Being a new parent is hard, and having a baby with complex medical needs can be even harder.
Dr. Hoge does research on understanding how having a child in the NICU impacts families’ mental health, which has found:
Most NICU parents experience some level of anxiety and depression and a heightened sense of worry about their child’s well-being.
Many NICU parents experience post-traumatic stress disorder after a NICU experience.
Cognitive behavioral therapy (CBT) can help reduce anxiety and depression and help families feel less fearful about their baby’s well-being.
“Our research shows that therapy can help families think through natural emotional responses to the NICU and face new experiences with confidence, without the fear that something bad is going to happen,” Dr. Hoge says.
Tip #5: Celebrate the victories
Dr. Hoge and her team like to celebrate every win with patients because she knows that time in the NICU and transitioning home can come with fear and uncertainty, but she sees progress in her patients in a variety of ways. Taking the time to celebrate small successes – like a stroller walk around the neighborhood or needing fewer tube feeds – can help families stay hopeful, positive and resilient.
NICU families conquer so many things. I always encourage our families to focus on hope and celebrate all of the things they’ve overcome.
Learn more
The Thrive Program has provided NICU graduates with expert and comprehensive primary care for more than 40 years. We offer both ongoing primary care and neurodevelopmental evaluations for babies who received care at any NICU, not just at Children’s Health. Learn more about our program.
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