Bringing Your Medically Fragile Child Home: A Florida NICU Discharge Checklist
Leaving the NICU is a milestone every family looks forward to — and for parents of a medically fragile child, it can also feel overwhelming. Bringing your baby home means taking on care that used to be handled by a team of nurses and specialists around the clock. The good news: with the right preparation, that transition can go smoothly. This checklist walks Florida families through what to arrange before discharge day.
1. Confirm Your Home Health Team Before Discharge
Before your baby leaves the hospital, you should already know who will be caring for them at home. Depending on your child's needs, that may include private duty nursing (PDN), a family-delivered care option through the Family Caregiver (FHHA) program — which allows a parent or other qualified family member to become a trained, paid caregiver — or daytime care through a Prescribed Pediatric Extended Care (PPEC) center. Start this conversation with your hospital discharge planner and a home health agency as early as possible, ideally weeks before your expected discharge date, since staffing and authorization can take time.
Learn more about our Private Duty Nursing and Family Caregiving (FHHA) services, or read our guide on the value of skilled nursing for medically fragile children. If you don't have a home health team in place yet, fill out our form or call us at 844-721-1433. We can often start the conversation while you're still in the NICU.
2. Secure Medicaid or Insurance Authorization
Nursing hours, equipment, and therapies all require prior authorization. Ask your hospital's care coordinator and your home health agency to begin the authorization process well before discharge, and confirm in writing how many nursing or aide hours have been approved. If you plan to apply for the FHHA program so a family member can be paid as a caregiver, that application should also start during your hospital stay.
3. Arrange Durable Medical Equipment and Supplies
Many NICU graduates go home with equipment such as a pulse oximeter, feeding pump, oxygen, or a ventilator. You typically won't have to find a supplier yourself — your hospital discharge planner or case manager arranges DME as part of discharge planning and can tell you which supplier has been assigned. If one hasn't been assigned yet, ask your discharge planner directly or ask your home health agency for a recommendation. Once you know your supplier, confirm delivery and setup at your home before your baby arrives — not after — and ask for a full supply list (tubing, filters, backup batteries) plus enough buffer stock to get through the first week without a supply run.
4. Complete Required Caregiver Training
Hospitals typically require hands-on training before discharge — CPR, use of home medical equipment, feeding tube care, or trach care, depending on your child's needs. If you're applying for the FHHA program, additional state-required caregiver training applies. Don't leave the hospital until you feel confident, and ask for written instructions you can reference at home.
5. Schedule Follow-Up and Early Intervention Appointments
Before you leave, make sure follow-up appointments are on the calendar — your pediatrician, any specialists (pulmonology, GI, neurology), and a newborn hearing or vision recheck if needed. If your baby was born prematurely or has a diagnosed condition, ask your pediatrician, NICU discharge planner, or hospital social worker for a referral to Florida's Early Steps program — or refer yourself directly through the Early Steps online referral form; parents and caregivers are allowed to self-refer. Early Steps is a state-run developmental and therapy program (physical, occupational, and speech therapy, developmental screening) — it isn't a home health provider and doesn't replace your nursing or personal care services. Families typically use it alongside pediatric home health care, not instead of it.
6. Prepare Your Home
Set up a dedicated, accessible space for equipment and supplies, test any backup power plan (a battery backup or generator plan matters if your child relies on powered equipment), and post emergency contact numbers where any caregiver can find them.
7. Build Your Emergency Action Plan
Before you leave the hospital, ask your DME supplier for the manufacturer's troubleshooting guide for each piece of equipment, and ask your home health team to walk you through exactly what to do if a device alarms or fails. Don't wait to figure this out on your own at home — get it in writing and confirm it while you still have your care team in the room. Write down when to call 911 versus your pediatrician versus your home health agency — see our guide on when to call 911, your pediatrician, or your home health agency for a full decision tree — and keep it posted and saved on your phone.
8. Organize Your Documentation
Keep a binder or folder (physical or digital) with your child's care plan, medication list and schedule, physician orders, insurance and Medicaid cards, and key phone numbers. This becomes essential any time you see a new provider or head to the ER. For more tools to help you get organized, see the Caregiver Resource Guide on our Resources and Tools page.
You Don't Have to Coordinate This Alone
Discharge planning for a medically fragile baby involves a lot of moving pieces — but you don't have to manage it by yourself. Home Heart Florida works with NICU discharge planners and families across Florida to get nursing care, FHHA applications, and care plans in place before your baby comes home. Contact us to start the conversation, even while you're still in the NICU.
Clinically reviewed by Christina Viamontes, MSN, RN
Sources
American Academy of Pediatrics, Hospital Discharge of the High-Risk Neonate
Florida Department of Health, Early Steps Eligibility and Screening
Florida Department of Health, Early Steps — Make a Referral
Florida Agency for Health Care Administration, Early Intervention Services (EIS)
Disclaimer
This article is for general informational and educational purposes only and is not intended as medical, legal, or professional advice. It does not replace consultation with your child's physician, care team, or other qualified healthcare provider, and reading it does not create a provider-patient relationship with Home Heart Florida. Always follow the specific instructions and care plan provided by your child's medical team, and consult your child's doctor with any questions about your child's individual condition or care. If you believe your child is experiencing a medical emergency, call 911 immediately.