The NICU guide: who everyone is and what to ask

Who everyone is

Neonatologist. The doctor who leads your baby's care. Often a different one each week or two, which is normal and still disorienting.

Fellow or resident. Doctors in training. They often know your baby's day-to-day details best.

Neonatal nurse practitioner. An advanced practice nurse who examines, diagnoses and prescribes. In many units they run much of the daily care.

Bedside nurse. The person who knows your baby best. If you ask one person one question a day, ask them.

Charge nurse. Runs the unit for that shift. The person to ask if you need something resolved.

Respiratory therapist. Manages breathing machines, oxygen and airway care.

Dietitian. Works out feeds and nutrition, which is a large part of NICU care.

Pharmacist. Checks every dose. Newborn doses are calculated by weight, so this matters. ⁶

Lactation consultant. Helps with expressing and feeding. Ask early, not once things are difficult.

Social worker. Insurance, benefits, transport, housing, and getting you what you need. Ask for them on day one rather than waiting to be offered.

Physical, occupational and speech therapists. Positioning, development and feeding.

Case manager or discharge planner. Organizes what has to be in place before you go home.

The machines and the numbers

Monitor. Shows heart rate, breathing rate, oxygen saturation and sometimes blood pressure. Alarms constantly. Most alarms are not emergencies.

SpO2. Oxygen level measured by a light sensor on the skin. The team works to a target range, and both too low and too high are harmful. ⁷

FiO2. The percentage of oxygen your baby is breathing. Room air is 21 percent oxygen. ⁷ A falling FiO2 means your baby is needing less help.

CPAP. Air pushed through nose prongs to hold the lungs open. Your baby is breathing on their own.

Ventilator. A machine breathing for your baby through a tube.

ECMO. A machine that adds oxygen to the blood outside the body. Used in the most serious cases. ⁸

Incubator or radiant warmer. Keeps your baby warm, which matters a great deal in small babies. ⁷

PIV, PICC, UAC and UVC. Different kinds of lines for fluids and medicines.

Feeding tube. A tube through the nose or mouth into the stomach.

Phototherapy lights. Blue light for jaundice. ⁴

Ask what the numbers should be for your baby. The targets differ by gestational age and by day.

Rounds, and how to use them

Rounds are when the team goes bed to bed and makes the plan for the day. It is the most information-dense 10 minutes of the day and you are allowed to be there.

Ask when rounds happen and ask to be present.

Three questions that work

What is the plan today?

What are you watching for?

What number or change would make you change the plan?

That third one is the most useful question in the NICU, and almost nobody asks it. It turns a vague answer into a specific one.

Two more, once a week

What has changed since last week?

What are you thinking about for discharge?

Write the answers down

You will not remember. Write them in the same place every time.

The binder

Get a ring binder on day one. Divide it into tabs.

Contacts. Every name and role, with the date you met them.

Daily log. One line a day. Weight, support, feeds, what changed, what was said.

Questions. Write them as they occur to you. Ask them at rounds.

Medications. Every drug, dose and start date.

Results. Imaging reports, blood results, screening results.

Consents and forms.

The NICU binder pack prints all of this with tabs and log sheets.

Why it matters: teams change, memories blur, and in two years you will want to know exactly what happened in week three. You will also be asked the same questions by every new specialist for years.

Being a parent in a room full of machines

Touch. Ask how to hold your baby, and how to do steady containment holding if they are too fragile to be picked up. It is not nothing. It is the thing.

Kangaroo care. Skin to skin, when your baby is stable enough. Ask when it can start.

Voice. Read out loud. It costs nothing and your baby knows your voice already.

Milk. If you are expressing, that is a direct medical contribution, and in some conditions it changes outcomes. ² Ask for lactation support early.

Ask when you can help with care. Diapers, temperature, mouth care. Doing something practical changes how the day feels.

Take pictures. Even the hard days. Families almost always wish they had more.

Look after yourself. Eat. Sleep somewhere. Accept the offer of help. This is a marathon and nobody wins it by being present 24 hours a day.

Things to ask about that are easy to miss

• Head ultrasounds, if your baby was born early. Ask when they are scheduled and what they showed. ⁹
• A term-equivalent MRI, which shows white matter injury far better than ultrasound. Ask whether it is planned. ⁹
• Eye screening for retinopathy, which starts on a schedule. ³
• Hearing screening, and which method was used. ^{10 11}
• bilirubin values and thresholds. ⁴
• Glucose values, if your baby had risk factors. ¹²
• Developmental follow-up. Ask for it to be arranged before discharge. ⁵
• Referral to early intervention. Free to evaluate, and you can refer yourself. ¹³

If you are worried about something

Say it early and say it specifically.

"My baby is feeding less well than yesterday" gets a different response from "I am worried."

Ask the bedside nurse first. Then the practitioner or fellow. Then ask to speak to the attending physician.

You can ask for a second opinion. It is a normal request. Ask for it to be documented.

You can ask for a family meeting. Ask for it in writing if a conversation is not happening.

If something feels wrong and you are not being heard, ask for the charge nurse. That is what they are for.