Lisa Houston, MSN, RNC-NIC, C-ELBW
Lisa is a certified neonatal intensive care nurse and educator with more than 20 years of NICU experience, including specialized care for extremely low birth weight infants. She reviews GROWNSY newborn-care content to help ensure guidance on feeding, sleep, temperature regulation, and warning signs is clear, practical, and clinically informed.
Medical Review By Lisa Houston, MSN, RN, RNC-NIC, C-ELBW
September is NICU Awareness Month, a time to recognize not only the strength of NICU babies and their families, but also the challenges that continue after discharge. For many families, the move from hospital to home can brings a new peak of stress as aroun
d-the-clock clinical support gives way to everyday caregiving decisions. Through Tiny Steps Home, Grownsy supports the NICU-to-home transition by seeing getting insights into families with unique needs, understanding the real pressures of caregiving, and offering practical help for the days ahead.
From the day their baby is admitted, many families begin looking forward to going home from the NICU. NICU nurse Lisa Houston says it is the most common question she is asked, from admission day to the day of discharge. Parents are always looking forward to this day! It can feel surprisingly overwhelming, even if the family has been preparing for this for days, weeks, or even months! After all this time, they have had monitors, routines, and a clinical team nearby around the clock. And now that little baby is ready to go home without all the support. Excitement and uncertainty can exist at the same time.
NICU nurses and Grownsy know a good discharge is not a single conversation on the morning a family leaves. In practice, discharge education begins at admission and builds throughout the hospital stay. This transition to discharge should begin well ahead of the actual day, with time to practice, ask questions, and become comfortable with the routines you will continue at home. Every NICU and every baby is different, so your care team should always be your source for the plan you will follow at home. Let's review some questions to ask of your team prior to discharge.
1. Start with the most important question: How will I know my baby is ready to go home?
NICU discharge is based on readiness of the baby, yes that tiny little one laying in the crib, and not on an exact weight or age. For a typical discharge, the team is looking at the whole picture: can your baby maintain a temperature in an open crib, are they able to eat all their required kcals by breast or bottle (or with an alternative plan), are they gaining weight, and are they free of apnea and bradycardia that requires stimulation. Together, these milestones help the care team decide whether a baby is ready for discharge.
Ask your team to explain what step your baby is on and when they anticipate being on the next step. If progress slows at one milestone, ask what is getting in the way and what support could help your baby move forward. Ask what support the baby may need to get there. For example, would your baby benefit from oxygen at home if they are having desaturation episodes? Or a feeding tube if they cannot complete all their oral feedings?
2. Start preparing for discharge and completing discharge tasks
As you get closer to discharge, there will be signs you are close. For instance, when your baby is maintaining temperature in an open crib, making steady feeding progress, gaining weight, and completing discharge tasks, you may feel like you are finally on the launching pad toward home! As discharge gets closer, move from observing care to practicing it with the team's guidance. Feed your baby. Change diapers. Take a temperature. Give medications if applicable. Practice bathing and soothing. Learn your baby's cues and routines.
This is also a good time to make sure discharge tasks are started and completed. This includes, but is not limited to:
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Metabolic screening
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Hearing screening
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Circumcision (as applicable)
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Safe sleep/Back to sleep
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Car seat fitting and trial (as applicable)
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CPR training (as applicable)
3. Make sure you understand exactly how and how much your baby eats
Feeding is one of the biggest parts of the discharge plan and life after the NICU. It is a place many NICU babies get stuck and where families have the most questions. Before discharge, make sure you understand your baby's feeding plan including:
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How often should my baby feed and is the timing flexible?
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If I am breastfeeding, bottle-feeding or a combination, what is the exact plan for my baby? If bottle feeding, what nipple should they use at home?
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Does breast milk or formula need to be fortified to a specific calorie combination and can I practice mixing it a few times before we leave?
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What nipple flow works best for my baby and how will I know when they are ready to change?
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What should I do if my baby takes less than expected at a feeding, seems too sleepy to eat, or starts feeding differently at home?
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How will we know my baby is growing well after discharge?
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How should fresh, thawed, and fortified breast milk be labeled, stored, and discarded?
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Who will adjust feeding amounts, medications, fortification, and daily routines as my baby grows, and when will the plan be reassessed?
A feeding plan should be specific enough that another caregiver could read it, understand it, and carry out the plan according to your baby's needs.
4. Know every medication/vitamin you will be responsible for giving at home
Medication needs vary: some babies go home with none, while others need vitamins, iron, thyroid medication, or additional prescriptions. Regardless of the number, it is important to know not only how to give them, but why they are be given and when they could be stopped. Key things to ask:
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Why is my baby receiving this medication?
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What is the timing and frequency?
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How much do I give?
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How will I know when it is time to increase or decrease the medication.
It is also important to practice drawing up and administering the medications many times prior to discharge.
5. Learn what is normal for your baby-and what should make you alarmed
One of the biggest changes after discharge is there is usually no more monitors for heart rate and saturation, no more nurses, and less of a support team. At home, you will rely on what you know, what you see, and how your baby behaves. Key parts of your infant's care to know:
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Standard temperature and how frequently to check it
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How many wet and dirty diapers to anticipate
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Stress cues that are typical for your baby
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Typical breathing pattern and rate
Knowing this will help determine a list of when to be concerned and when to call the doctor. Before leaving the hospital, identify your baby's pediatrician and confirm the first appointment for the timeframe recommended by your NICU team. This information, including who to call during office hours and after hours, should be included in your discharge paperwork.
To help you distinguish between routine newborn behaviors and signs that require immediate medical attention, keep a close eye on a few critical red flags once you are home. Contact your pediatrician or seek emergency care immediately if your baby exhibits signs of respiratory distress---such as nasal flaring, grunting, or visible chest retractions where the skin sucks in around the ribs and neck. You should also reach out right away if your infant develops a fever (a rectal temperature above 100.4°F / 38°C) or drops below 97.5°F (36.4°C), falls below 4 to 6 wet diapers in a 24-hour period, or displays extreme lethargy and floppiness that makes them difficult to wake for feedings.
6. Review safe sleep, car seat safety, and CPR
Safe sleep at home should start in the NICU-that means back to sleep, with a swaddle, and no positioning devices. The American Academy of Pediatrics guidance recommends placing babies on their backs for every sleep on a firm, flat, non-inclined sleep surface, without loose blankets, pillows, bumpers, positioners, or other soft items in the sleep space.
Your baby should also travel in an appropriate rear-facing car seat. Some NICU babies require a period of observation in their car seat before discharge based on gestational age, medical history, or hospital policy. Ask your NICU whether your baby needs this and make sure you know how to position and buckle your baby correctly according to the car-seat manufacturer's instructions. Complete education on car seat safety prior to discharge. Most NICUs have access to a certified car seat technician...ask them your questions!
Some NICUs require a NICU based CPR class before discharge. Even if your NICU does not require this, it is a good idea to be familiar with the steps of CPR. If your infants is going home with a respiratory or cardiac diagnosis, you will likely take some type of CPR training. It is recommended that if other people will be helping take care of your child, they also take a CPR training course.
7. Leave with a follow up plan you can actually follow
The discharge plan does not end when you walk out of the hospital. Before leaving, know when your baby will see a primary care clinician and whether any other appointments are needed. Depending on your baby's history, follow-up may include ophthalmology, developmental services, feeding therapy, cardiology, pulmonology, surgery, or other specialists - but many babies will have a much simpler plan.
Write appointments down before you leave. Confirm the location, phone number, and timing. Ask whether your NICU has already sent records to the pediatrician, and know whom to contact if an appointment has not been scheduled as expected.
8. Ask about the things families sometimes forget in the excitement
Discharge day can be busy, and small practical details are easy to miss. In the days before discharge, be sure to ask whether newborn screening, hearing screening, immunizations, eye exams when applicable, and any other planned testing have been completed or have follow-up arranged.
On the day of discharge, confirm that you have the final feeding recipe, medication list, prescriptions, and a copy of your discharge instructions. If you have breast milk stored in the NICU, you may need to start taking it home even before the date of discharge. Make sure you have the supplies you need for the first day at home so that your first evening is not spent trying to solve a problem that could have been addressed before you left.
9. Ask the questions that feel too small, too obvious, or too late
After a long NICU stay, families sometimes feel as though they should know everything. You do not need to! Questions about bathing, visitors, taking your baby outside, feeding schedules, pacifiers, tummy time, siblings, pets, temperature, travel, when to call...the list can go on and these are ALL reasonable questions. Ask what precautions your team recommends for visitors, hand hygiene, sick contacts, siblings, crowds, and seasonal respiratory illnesses. Many NICUs have rules in place that you cannot call after discharge and ask questions, so use this time to ask anything you are thinking.
If an explanation still does not make sense, ask the team to demonstrate the skill, rephrase the instructions, or show you a video. You can also use teach back: explain the plan in your own words and ask if it is right.
10. Ask what the first night at home may feel like-it may be different than you imagined
Leaving the NICU means leaving behind a place where someone was always nearby to answer a question. It is common for the first night home to feel quiet, exciting, emotional, and even a little strange. You may find yourself checking on your baby more often than expected or second-guessing routines that felt easy in the hospital.
Preparation does not mean you will never have questions. It means you know your baby, understand the plan, and know who can help when a new question comes up. You have already been learning how to care for your baby throughout the NICU stay. Discharge is the point when that learning moves home with you.
One reason discharge education needs to start early is that the final steps can happen quickly. Once your baby meets the medical milestones for discharge, there may not be extra days available just for teaching and practice. Use the entire NICU stay to learn your baby's care, ask questions, and practice the skills you will need at home. Going home can bring excitement, relief, fear, and plenty of questions and emotions all at once. Being prepared does not mean knowing everything. It means knowing your baby, understanding the plan, and knowing who to call when something changes. One final word of advice: a simple question you can ask your NICU team: "If this were your baby going home today, what are the three things you would want me to be completely clear about before I leave?"