After the NICU: What Happens Next and How to Prepare

Having a baby spend time in the neonatal intensive care unit (NICU) is a marathon-type event. It requires stamina, patience, and courage. Really. What happens after the NICU, though? Once you are home with your baby, what can you do to help prepare for the next steps?

Many babies who have been discharged from the NICU continue to need some extra support. Families often coordinate multiple appointments, prescriptions, and medical equipment at home.

It can feel like a lot because it is a lot.

I’d like to remind families that their pediatrician is ready to help. That being said, the pediatrician is most helpful when they have information about the baby’s time in the NICU.

This article reviews what to remember when going to the first outpatient appointment after NICU discharge. 

If nothing else: show up to the appointment with your baby. Whether it’s the pediatrician or a specialist, simply showing up is a huge first step.

Scheduling the NICU follow-up appointment

When a baby is discharged, the NICU team in the hospital will tell a family when their baby needs to be seen for an outpatient appointment. (“Outpatient” means that patient just comes to the clinic for an appointment and then goes back home. This is as opposed to “inpatient” where they spend nights in the hospital, like in the NICU).

Many NICUs have their own team of specialists that follow and coordinate care with the babies discharged from the NICU. Always follow their recommendations. Many babies also need to see their own local pediatrician. Some families may not have access to a dedicated NICU follow up team. 

The appointment may be as early as the day after discharge, or it may be a few days later. 

The team takes everything into consideration and helps make the safest and most reasonable decision. Many times, families call to make this appointment while their baby is still physically in the hospital.

Why is the NICU follow-up appointment so soon after discharge?

Parents often ask why the appointment is just days after leaving the hospital. The reasons vary from one baby to the next. Babies are in the NICU for a variety of causes, from prematurity to infection to needing surgery and more. So, the reasons for the follow-up appointments vary too. However there are a few common things pediatricians watch for in babies recently discharged from the NICU.

• Weight. Pediatricians monitor newborn weights and growth very closely.  It can be helpful to have a baseline weight on the pediatrician’s scale. In my experience, even well-calibrated scales can differ from each other by an ounce or two. With newborns, every ounce matters. Once a baby has been weighed on a specific scale, follow-up weights taken days later can be more meaningful. 
• Jaundice. Sometimes, a baby needs to be checked within a day or two of leaving the hospital to check for jaundice. For a variety of reasons, many babies in the NICU are at higher risk for jaundice.
• Start coordinating specialist care. Depending on local resources, many babies need referrals and prescriptions from their pediatrician. There is no reason to delay this. Also, if things don’t go as planned with insurance, paperwork, or scheduling, it’s nice to have the pediatrician’s medical office on your team. It’s not their first time navigating the system.
• Establish care with their new doctor. A pediatrician can help patients with whom they’ve established a patient-doctor relationship. All parents of newborns have questions, and if the baby has been in the NICU, they may have even more. Either way, it’s helpful to meet the pediatrician in a lower-stress appointment rather than waiting for something urgent or concerning. 

What to bring to the NICU follow-up appointment with the pediatrician

Any parent can tell you it takes practice leaving the house with a new baby. Sometimes, we forget extra diapers. Or a change of clothes. It really does take time to get into a rhythm and have a fully-stocked bag. For the very first outpatient appointment after the NICU, consider prioritizing the following:

• NICU discharge summary. This is an important piece of paper. Ideally, the baby’s pediatrician will be sent a copy, but systems are not perfect. Empower yourself by asking for a copy of the discharge summary. Not only will it summarize why your baby was in the NICU, but it will also list any medications your baby has been prescribed and any specialists they need to follow up with. Please note that some hospitals cannot provide this right away, but it’s usually worth asking. If nothing else, make sure the NICU knows where you will be taking your baby for regular pediatric appointments. That way they can send information to the correct place.
• A way to feed your baby. This is especially for those that do not live close to their pediatrician’s office. Hopefully there’s not much of a wait before or after your baby’s appointment, but unexpected things happen. So whether it’s breast milk or formula, at the breast or with a bottle, it will be one less thing to worry about if you can feed your baby when they need. As a reminder, it’s okay to pump breast milk at an appointment for your baby.
• A list of questions or things you need from the pediatrician. So much is going on at this appointment, parents often forget to ask something that has been on their mind. Some NICUs are able to write prescriptions and specialist referrals. If not, the pediatrician may be able to help. If they have the discharge summary, though, they can go through it and help pinpoint exactly what is needed. This puts less pressure on parents to know in advance. 

What happens at these appointments with the pediatrician?

The first appointment after NICU discharge with a general pediatrician is a lot of information-gathering. Parents are asked questions about the pregnancy, the birth, family medical history, feeding goals, and what happened in the NICU. 

The baby will be weighed and measured. 

Then, the pediatrician examines the baby from head to toe. They’ll ask (and answer) more questions and review what happened in the NICU. They cover the next steps for the baby. Pediatricians also review basics in newborn and baby care, covering car seat recommendations, safe sleeping practices, and what to do for a fever. (Spoiler alert: for babies under age 3 months, a fever always needs prompt medical attention).

Depending on the baby’s age, state health recommendations, what has already happened in the NICU, the first appointment may also include vaccines, blood tests, bilirubin screening (which can be done has a blood test or with a flashlight-looking device called a transcutaneous bilirubin meter). 

There are few concrete things that many babies discharged from the NICU need.

I mention these things so that families can anticipate if any of these may apply to their baby.

• Early Intervention. This service includes speech therapy, occupational therapy, and physical therapy. This is provided by the state, so is often at no cost to families. Almost all premature babies can benefit from an evaluation. Many of these babies have met therapists from these fields in the NICU already. Parents can self-refer. No doctor’s prescription is needed. (Google the name of your state and the words “early intervention.”)  A pediatrician can also help get the process started. 

• Additional specialist appointments. Depending on why a baby was in the NICU, they may need follow up with pediatric neurologists, surgeons, ophthalmologists, orthopedic specialists, GI doctors, among others. It’s important to keep these appointments. If a parent anticipates a challenge keeping these appointments, they should discuss it with their pediatrician or with the specific specialist office.

• Prescriptions or vitamins. This does not apply to every baby, of course. I mention it here so that parents can prepare, ideally making a list of prescriptions they need written or refills on. It’s so much easier to address in person rather than calling back later when parents remember. Of course, please note that calling later is okay too!

Summary (& Reminder About Life After the NICU)

Bringing a baby home after a NICU stay is a huge event. Your baby’s pediatrician is ready to help. If a parent has a copy of the NICU discharge summary and makes sure to keep all follow up appointments, this goes a long way in supporting a baby’s growth and development.

Right along with all the check-box tasks, I want to remind families to also just be present and learn about their baby as the person that they are. These moments of just observing a baby are probably more enjoyable than coordinating appointments. And, hopefully they’re more rewarding for everyone in the family. There can be joy after a time in the hospital.

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If you know a new or expecting parent, consider my booklet on frequently asked questions about newborns. Find it here.

Maya M. Mahmood, D.O., F.A.A.P. is a board-certified pediatrician and mom. She is passionate about parents having evidence-based information to help their families be healthier. Subscribe to the newsletter or follow on social media @mayapeds.

Disclaimer:

This is for information only. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. Please see the complete disclaimer.

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