After days or weeks of NICU monitoring, the day comes when the team says “you can go home.” For families of HIE babies, that day arrives with mixed feelings: relief, gratitude, and a quiet panic about what comes next. The first week home is not the end of recovery. It is the start of a new phase, with a different rhythm and a different set of responsibilities. This guide is a practical, day-by-day playbook: what to confirm before discharge, what to do in the first 7 days, when to call, when not to worry, and how to take care of yourself while taking care of your baby.
Before You Leave the NICU: The Discharge Day Checklist
The discharge meeting is your last opportunity to ask everything in one place. A complete handoff includes the following:
Day 1: Getting Home
The day you leave the NICU is intense. Plan for less, not more. Specifically:
- Drive home with one driver and one observer. If possible, have a partner or family member with you for the trip.
- Use the car seat the NICU has tested. Many NICUs do a “car seat challenge” before discharge; the seat used during that test should be the one you take home.
- Keep the first night low-key. Skip visitors. Skip extensive house-cleaning. Get the baby into a safe sleep environment, give the next medication on time, attempt the next feed, and rest if you can.
- Don’t expect yourself to do everything. If a meal arrives, eat it. If someone offers to do laundry, accept.
Days 2–3: Establishing the Rhythm
By day 2 or 3, you should be moving into a feedable, manageable rhythm. Things to focus on:
- Medication schedule. Use an alarm or app for each dose. Anticonvulsants in particular need to be on time. Write it down each time.
- Feeding tracking. Track volume and time of each feed. Most apps allow this; a paper notebook also works. Note any refusals, vomiting, or unusual behavior.
- Output tracking. Wet diapers and stools. Aim for at least 6 wet diapers per 24 hours after the first few days. Lower output is a warning sign.
- Pediatrician visit. Most HIE babies see the pediatrician within 1-3 days of discharge. This visit is a checkpoint, not a problem. Bring your medication list, feeding log, and discharge summary.
- Sleep when the baby sleeps. Cliché but true. The 3-hour sleep cycle is not negotiable; rest accordingly.
The first week home is intense. If you have questions about whether something you’re observing is normal or warrants concern, your NICU team and pediatrician are the first calls.
Days 4–5: Watching, Tracking, Calling When Needed
By midweek, you have a basic rhythm. Now is the time to watch for things that warrant a call:
| Sign | What to Do |
|---|---|
| Fever 100.4°F (38°C) or higher (under 3 months) | Emergency department; do not wait |
| New seizure activity (rhythmic jerking, sustained stiffening, repetitive movements) | Call neurologist or 911 |
| Difficulty breathing, blue color, persistent fast breathing | 911 or ED immediately |
| No wet diapers in 8 hours, persistent vomiting | Call pediatrician now |
| Forceful, green, or bloody vomiting | ED |
| Choking or apnea spells (pauses in breathing) | 911 |
| Persistent crying not consoled, extreme lethargy | Call pediatrician |
| Feeding poorly for several feeds | Call pediatrician |
| Yellowing of skin worsening | Call pediatrician |
| Concern that “something is off” | Call pediatrician; trust your instinct |
Days 6–7: First Week Wrap-Up
By the end of the first week, the goal is to have a stable rhythm and a clear plan for what comes next:
- Confirm all follow-up appointments are on the calendar. Pediatric neurology, NICU follow-up, ophthalmology, audiology, Early Intervention. If any have not been scheduled, call now.
- Submit the Early Intervention referral. Most NICUs do this before discharge, but check that it has gone through. If not, your pediatrician can help.
- Set up a binder or digital folder. Discharge summary, medication list, feeding plan, appointment list, contact numbers. This is your single source of truth for the next several months.
- Identify your “team.” One pediatrician you trust. One contact at the NICU you can call with questions (often the discharge nurse or social worker). One pediatric neurologist. This trio will get you through most situations.
- Connect with another HIE family. Through Hope for HIE, your NICU’s parent support group, or a local network. Other families understand things general parenting communities do not.
The Three Things That Save You
Across the families we have worked with, three habits make the biggest difference in the first weeks home:
1. One organized place for everything
A binder, a notebook, or a single digital folder. Discharge summary, medication list, feeding tracker, appointment list, contact numbers, questions to ask. When you arrive at the pediatrician or neurologist, you can find any document in 30 seconds. When the cardiology office asks for the discharge summary, you can email it. When you wonder whether the baby has eaten more or less today than yesterday, you can answer.
2. A predictable schedule, even if imperfect
Medications on time, feeds on time, sleep when you can. The schedule does not have to be flawless to work. Aim for “consistent enough that the day has shape,” not “perfect.” This is more important for your wellbeing than for the baby.
3. Help from one trusted person
Whether it is a partner, a parent, a friend, or a paid caregiver, one person who knows your baby’s situation and can step in for an hour while you sleep, eat, or shower makes a meaningful difference. The first week is not the time to do everything yourself.
If your baby came home with feeding tubes or equipment
Babies discharged with NG tubes, G-tubes, feeding pumps, oxygen, or monitors require an additional layer of preparation. Confirm before discharge that you have all supplies for at least the first week (extra tubes, syringes, feeding bags, batteries, oxygen tank if applicable) and that you know how to clean and replace what needs replacing. Verify the home health agency or durable medical equipment supplier has the order and a delivery date. Get a phone number for technical questions about the equipment, separate from the medical questions for the pediatrician. If something is malfunctioning at 2 AM and the manual does not have the answer, you want a number to call rather than the emergency room. Most equipment companies have 24-hour technical support for medical devices in the home.
If feeding plans change after discharge
Feeding plans often need adjustment after discharge as your baby grows or as new patterns emerge. Common adjustments include changing feed volume or frequency, switching from a slower-flow to a regular nipple, adding fortifier to breast milk, or transitioning between tube and oral feeding. The pediatrician, NICU follow-up clinic, or feeding therapist can guide these changes. Do not adjust feeding plans on your own based on internet advice; the guidance for an HIE baby is often different from generic infant-feeding advice. If your baby is not gaining weight as expected, is refusing feeds, or seems newly distressed during feeding, call the team rather than waiting for the next visit.
Looking After Yourself
This part is often the hardest because it feels selfish. It is not. A parent who is sleep-deprived, anxious, and depleted cannot do this work well. Some specific things:
- Sleep when the baby sleeps. Even imperfectly, even for 30 minutes. Cumulative sleep matters.
- Eat regular meals. Cooking is hard now. Frozen dinners, sandwiches, takeout, whatever works. Calories matter; gourmet does not.
- Accept help. Meals, laundry, errands, sibling care, dog walking. Whatever someone offers, say yes.
- Limit information intake. Reading every HIE blog, forum, and study from 2 AM until 4 AM is not helpful. Set a window for research; close the laptop after.
- Watch for postpartum mood symptoms. Persistent low mood, panic attacks, intrusive thoughts, anhedonia. Postpartum depression and anxiety are common after NICU discharge. Call your obstetrician or a mental health provider; this is treatable.
- Connect with other HIE families. Hope for HIE, NICU parent groups, local networks. The shared experience helps.
What to Expect in Weeks 2 and Beyond
By the end of week one, you have completed the steepest part of the transition. Weeks 2 to 4 typically include:
- Pediatric neurology first visit (or scheduled).
- NICU follow-up clinic visit (or scheduled).
- Early Intervention initial evaluation.
- Continued weight checks and feeding monitoring.
- Possible adjustments in medications.
- First brain MRI follow-up if recommended.
- Ongoing developmental observations: tone, movement, alertness, feeding patterns.
Each visit is a checkpoint. Bring questions written down. Take notes during the visit. Confirm next steps. Build the team you will work with for the months and years ahead.
Coming home is the start of a new phase. If aspects of the NICU care raise questions for your family, a free case review can help you understand what the record shows.
Related reading for parents
- Neurodevelopmental follow-up after HIE: the appointments that matter most
- Red flag signs in the first year after HIE: developmental warnings to watch for
- Feeding your baby during and after HIE cooling treatment
- Good outcomes after HIE: what the long-term research actually shows
- HIE without cerebral palsy: what happens to these children long-term
Our team helps families in 38 states think through whether the medical care leading to and during the NICU stay met the standard. No cost. Answers first.