Going home from the NICU

The short answer

Discharge is a process with defined criteria and a written plan, not simply reaching a weight. ¹

Before you leave, make sure five things exist: a written follow-up plan, hearing screening results with any follow-up appointment booked, an early intervention referral, a medicine list with doses, and a written plan for what to do if you are worried at home.

The numbers, up front

Discharge criteria: Discharge of a high-risk newborn involves defined readiness criteria and a written follow-up plan rather than a single weight threshold ¹
Hearing follow-up: The recommended timeline is screening by 1 month, diagnosis by 3 months and early intervention by 6 months, and a refer result needs a booked appointment ²
Early intervention: A child under 3 with a diagnosed condition or a delay is entitled to a free evaluation, and you can refer your own child ³
Bilirubin after discharge: Guidance sets out when a newborn must be seen again after discharge, based on age at discharge and the bilirubin level at that time ⁴
Developmental follow-up: High-risk newborns are enrolled in follow-up that assesses movement, vision and development at set ages ¹
Corrected age: Development is judged from the due date rather than the birth date for the first two years ⁵

The discharge checklist

Ask for each of these before you leave. Get them in writing.

Appointments

Pediatrician, with the first visit booked. Ask how soon.
bilirubin recheck, if your baby is being discharged in the first days. Ask what the level was and when the recheck is. ⁴
Hearing follow-up, if the screen referred or if your baby has risk factors. Get the appointment booked before you leave. ²
Eye follow-up, if your baby was screened for retinopathy. ⁵
Developmental follow-up clinic, with a date. ¹
Any specialist: neurology, cardiology, surgery.

Referrals

Early intervention. Ask whether it was made. If not, make it yourself. It is free and you do not need a diagnosis. ³
Home nursing, if your baby needs it.

Paperwork

Discharge summary. Ask for a copy, not a leaflet.
Medicine list with doses, times and how long to continue.
Growth chart with your baby's plotted points.
Immunization record.
Newborn screening results.
Any equipment instructions.

Training

Feeding, including tube feeding if needed.
Medicines, including how to measure a dose.
Any equipment: oxygen, monitor, feeding pump.
Infant CPR. Ask for it. Most units will arrange it.

A written "what if" plan

What to do if your baby has a fever, feeds poorly, is unusually sleepy, has a colour change, or if you are simply worried. Who to call, and when to go to an emergency department.

The appointments most often missed

Hearing. A "refer" result needs a follow-up appointment, and this is one of the most common things to fall through. The recommended timeline is screening by 1 month, diagnosis by 3 months and early intervention by 6 months. ² Get the date before you leave.

Bilirubin recheck after early discharge. ⁴

Developmental follow-up. Often booked for months ahead, and easy to miss when your baby seems well. Keep it. Differences after preterm birth or brain injury often show later. ¹

Early intervention. Frequently discussed and not actually referred. Ask specifically whether the referral was made and to whom. ³

The first weeks at home

It is harder than you expect, and different from what you expected. Many parents describe the first week home as more frightening than the NICU, because the monitors are gone and so is the team.

You will watch your baby breathe. Everyone does.

Feeding often takes a long time. If feeds are taking more than about 30 minutes, or your baby coughs during them, ask for a feeding assessment.

Weight is the measure everyone watches. Ask what gain is expected.

Infection matters more for a while, particularly if your baby was born early or has lung disease. Hand washing, and keeping unwell visitors away, are reasonable rules to enforce without apology.

Use corrected age. A baby born three months early who is six months old is three months corrected, and that is what milestones are judged against. ⁵

Sleep in shifts if you can. Two exhausted parents are worse than one rested one.

Money and support

Ask the social worker before you leave, not after.

Medicaid. Many children qualify through disability or through a state waiver, sometimes regardless of family income. Waiting lists are long, so apply early. ⁶
SSI. A monthly payment for children with disabilities and limited household income. ⁷
Your state's program for children with special health care needs. ⁸
Family-to-family health information center, which helps families navigate all of this. ⁹
Parent center, for education rights later. ¹⁰

See paying for care and the financial help finder.

What to watch for

Call your pediatrician the same day for:

Fever, or a temperature that is low.
Feeding much less than usual.
Unusual sleepiness, or being hard to wake.
Fast or laboured breathing, or pauses in breathing.
A change in colour.
Vomiting repeatedly.
Fewer wet diapers.
Yellowing skin that is getting deeper. ⁴
Anything that makes you think your baby is not right.

That last one is not filler. In newborn infection, a parent saying their baby is not right is one of the most common presentations. ¹¹

If your baby has a shunt, learn the blockage warning signs and keep the neurosurgery number in your phone. ¹²

Questions parents ask

When will my baby be ready to go home?

Readiness is a set of criteria rather than a single weight: stable temperature, feeding well enough to grow, stable breathing, and a family prepared to care for them. ¹ Ask your team which criteria are still outstanding, because that gives you something concrete to track.

What is the one thing I must not leave without?

A written follow-up plan with actual dates, including hearing follow-up if there was a refer result. ² ¹ Appointments that exist only as an intention are the ones that get missed.

Do I have to wait for a diagnosis before starting therapy?

No. A child under 3 with a diagnosed condition or a suspected delay is entitled to a free evaluation, and you can refer your own child without a diagnosis or a doctor's referral. ³ Evidence supports starting early rather than waiting. ¹³

Should we have a home monitor?

Ask your team. Home monitors are used for specific medical reasons rather than for reassurance, and they generate a lot of false alarms. If your baby needs one, you will be told and trained. If they do not, a monitor usually adds anxiety rather than removing it.

Words on this page, in plain English

bilirubin: A yellow substance made when the body breaks down old red blood cells. High levels turn the skin and eyes yellow.
early intervention: The public program that provides therapy and support to children under 3 with delays or diagnosed conditions. It is required by federal law.
shunt: A thin tube placed by a surgeon to drain extra spinal fluid from the brain to the belly, where the body absorbs it.

See the full glossary and records decoder

Where these facts come from

American Academy of Pediatrics, Pediatrics. Hospital Discharge of the High-Risk Neonate. 2008. publications.aap.org/pediatrics/article/122/5/1119. Link checked September 3, 2026.
CDC. Early Hearing Detection and Intervention (EHDI) Hearing Screening and Follow-up Survey. 2024. www.cdc.gov/hearing-loss-children/hearing-screening/index.ht. Link checked September 3, 2026.
U.S. Government Publishing Office, Electronic Code of Federal Regulations. 34 CFR Part 303, Early Intervention Program for Infants and Toddlers with Disabilities. 2025. www.ecfr.gov/current/title-34/subtitle-B/chapter-III/part-30. Link checked September 3, 2026.
American Academy of Pediatrics, Pediatrics. Clinical Practice Guideline Revision: Management of Hyperbilirubinemia in the Newborn Infant 35 or More Weeks of Gestation. 2022. publications.aap.org/pediatrics/article/150/3/e2022058859. Link checked September 3, 2026.
Eunice Kennedy Shriver National Institute of Child Health and Human Development. Preterm Labor and Birth. 2025. www.nichd.nih.gov/health/topics/preterm. Link checked September 3, 2026.
Centers for Medicare and Medicaid Services, Medicaid.gov. Home and Community Based Services. 2025. www.medicaid.gov/medicaid/home-community-based-services/inde. Link checked September 3, 2026.
Social Security Administration. Benefits for Children with Disabilities. 2025. www.ssa.gov/pubs/EN-05-10026.pdf. Link checked September 3, 2026.
Health Resources and Services Administration. Title V Maternal and Child Health Services Block Grant. 2025. mchb.hrsa.gov/programs-impact/title-v-maternal-child-health-. Link checked September 3, 2026.
Family Voices. Family-to-Family Health Information Centers. 2025. familyvoices.org/affiliate-organizations/. Link checked September 3, 2026.
Center for Parent Information and Resources. Find Your Parent Center. 2025. www.parentcenterhub.org/find-your-center/. Link checked September 3, 2026.
American College of Obstetricians and Gynecologists. Committee Opinion 797, Prevention of Group B Streptococcal Early-Onset Disease in Newborns. 2020. www.acog.org/clinical/clinical-guidance/committee-opinion. Link checked September 3, 2026.
National Institute of Neurological Disorders and Stroke. Hydrocephalus. 2025. www.ninds.nih.gov/health-information/disorders/hydrocephalus. Link checked September 3, 2026.
JAMA Pediatrics. Early, Accurate Diagnosis and Early Intervention in Cerebral Palsy. 2017. jamanetwork.com/journals/jamapediatrics/fullarticle/2636588. Link checked September 3, 2026.