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Caring for a Seriously or Chronically Ill Child

When Your Baby’s in the NICU

New parents eagerly look forward to bringing their baby home, so it can be frightening if your newborn needs to be admitted to the neonatal intensive care unit (NICU). At first it may seem like a foreign place, but understanding the NICU and what goes on there can help ease your fears and let you better help your baby.

About the NICU

If your baby is sent to the NICU, your first question probably will be: What is this place? With equipment designed for infants and medical staff specially trained in newborn care, the NICU is an intensive care unit created for sick newborns who need specialized treatment.

Sometimes the NICU is also called:

  • a special care nursery
  • an intensive care nursery
  • newborn intensive care

Babies who need to go to the unit are often admitted within the first 24 hours after birth. Babies may be sent to the NICU if:

  • they’re born prematurely
  • problems happen during their delivery
  • they show signs of a health issue in the first few days of life

Only very young babies (or babies with a condition linked to being born prematurely) are treated in the NICU — they’re usually infants who haven’t gone home from the hospital yet after being born. How long they’ll stay in the unit depends on the severity of their condition.

Who Will Be Taking Care of My Baby?

Although many people help care for babies in the NICU, those most responsible for day-to-day care are nurses. You might come to know them very well and rely on them for information and reassurances about your baby.

The nurses you might interact with include a:

  • charge nurse: the nurse in charge of the shift
  • primary nurse: the one assigned to your baby
  • neonatal nurse practitioner: someone with additional training in neonatology care

Other people who may help care for your baby include:

  • a neonatologist: a doctor specializing in newborn intensive care who heads up the medical team
  • neonatology fellows, medical residents, and medical students: all pursuing their training at different levels
  • pediatric hospitalist: a pediatrician who works solely in the hospital setting
  • various specialists: such as a neurologist, a cardiologist, or a surgeon to treat specific issues with the brain, heart, etc.
  • a respiratory therapist: who helps administer treatments that help with breathing
  • a speech-language pathologist: who helps babies with feeding or swallowing problems
  • a nutritionist: who can determine what babies receiving IV nutrition need
  • a physical therapist and/or occupational therapist: who work with feeding and movement issues with the infants and their parents
  • a pharmacist: who helps manage a baby’s medications
  • lab technicians: who process the laboratory tests (e.g., urine, blood) taken
  • a chaplain: who can counsel you and provide comfort; chaplains may be interfaith or of a particular religious affiliation, but they’re there to support anyone looking for a spiritual/religious connection
  • a social worker: who helps you get the services you need and also lends emotional support by connecting you to other families and therapists, if needed

Questions to Ask the Neonatologist or the Nurses

To better help you help your baby during a stay in intensive care, it’s wise to get as much information as possible about what to expect. If you have questions, talk to the neonatologist or the nurses.

The nurses see your baby every day, so they can give you frequent updates on your little one. The plan of care for your infant is discussed on “rounds” every day. Nurses can help you to understand the diagnosis and treatment plan, but it’s also helpful to discuss these issues with other members of the medical team, including:

  • the attending neonatologist
  • neonatal fellow
  • neonatal nurse practitioner
  • the residents who are caring for your baby

All of these health professionals are involved in deciding the best plan of care for your baby.

You might want to ask the neonatologist and other doctors and/or the nurses:

  • How long will my baby be in the unit?
  • What, specifically, is the problem?
  • What will be involved in my baby’s treatment and daily care?
  • What medicines will my baby have to take?
  • What types of tests will be done?
  • What can my baby eat and when?
  • Will I be able to nurse or bottle-feed my baby — if so, when and how?
  • Will someone help me learn how to nurse my baby?
  • What can I do to help my baby?
  • Will I be able to hold or touch my baby?
  • How often and for how long can I stay in the unit? Can I sleep there?
  • What sort of care will my baby need when we get home?
  • Is there someone who can help us through the process?

You also may want to talk to the nurses in more detail about your baby’s daily care and what to expect when you spend time with your little one. Also, ask about the visiting schedule and any rules of the NICU so you’ll know which family members can see the baby and when.

Questions to Ask the Social Worker

You might want to ask the social worker:

  • Where can we get food when we’re here?
  • Can we eat in the NICU?
  • Are cots or recliners available if we’re allowed to stay overnight? What about blankets and pillows?
  • Is nearby temporary housing available (such as through a Ronald McDonald House)?
  • If so, how do we get a room?
  • Is the room free? If not, is the cost low and/or covered by our health insurance?
  • Are computers with Internet access available for doing work or emailing friends and loved ones about our baby’s progress? Is wi-fi access available for smartphones and other devices?
  • Can we use our cellphones in the NICU? If not, how can we be reached in the NICU?
  • Are phones available in or around the NICU?
  • Is there a support group or other parents of children in the NICU we can talk to?

What to Expect in the NICU

Walking into the NICU can feel like stepping onto another planet — the environment is probably unlike anything you’ve experienced. The unit is often busy, with lots of activity, people moving around, and beeping monitors.

Once settled in the unit, your baby will receive care tailored to your little one’s specific needs. Most NICU babies are on special feeding schedules, depending on their level of development or any problems they have. For instance, some infants are too premature or too sick to eat on their own, so they have a feeding tube that runs through the mouth and into the stomach. Others need high-calorie diets to help them grow.

Medications are another crucial part of NICU care — your child may take antibiotics, medicine to stimulate breathing, or something to help his or her blood pressure or heart rate, for example.

To ensure that your baby’s care stays on track, the doctors also will order various tests, possibly including periodic blood and urine tests, X-rays, and ultrasounds. For infants whose care is complicated and involved, the doctors or nurses will place a line into an artery or vein so they can draw blood without having to repeatedly stick the baby.

NICU staff try to make the infants’ stay in the nursery as comforting as possible for the infant as well as the families. The nurses can explain what all of the monitors, tubes, tests, and machines do, which will go a long way toward demystifying the NICU.

NICU Equipment

Here’s a brief look at what some of the unfamiliar equipment does and how it may help your baby, depending on your little one’s condition and diagnosis:

  • Feeding tubes: Often, NICU babies cannot get as many calories as they need through regular feeding from a bottle, so the nurses will use a small feeding tube to deliver formula or breast milk (that the mother pumps). The tube is placed into the baby’s stomach through the mouth or through the nose. If an infant is able to take some milk from the bottle, the nurse will just give the rest through the feeding tube. Sometimes, the babies get all their nutrition through the feeding tube so that they don’t use excess energy trying to feed from the bottle. The feeding tubes shouldn’t be painful — they’re taped in place so they won’t move around and cause friction. However, if they’re in place for a long time they can cause erosions in the stomach or nose where they rub, so are changed routinely to avoid this.
  • Infant warmers: These are beds with radiant heaters over them. Parents can touch their babies in the warmers, but it’s always a good idea to talk to the NICU staff about it at first, just in case.
  • Isolettes: These are small beds enclosed by clear, hard plastic. The temperature of the isolette is controlled and closely monitored because premature infants frequently have difficulty maintaining their body temperature. Holes in the isolettes allow access to the infants so the nurses and doctors can examine the infants and parents can touch their babies.
  • IVs and lines: An intravenous catheter (or IV) is a thin flexible tube inserted into the vein with a small needle. Once in the vein, the needle is removed, leaving just the soft plastic tubing. Almost all babies in the NICU have an IV for fluids and medications — usually in the hands or arms, but sometimes in the feet, legs, or even scalp. At first, the IV may be inserted in the baby’s umbilical cord. In the first hours after delivery, the umbilical cord provides a way for the doctors to insert arterial or venous lines without having to use a needle through the skin. Instead of giving your baby injections every few hours, IVs allow certain medications to be given continuously, several drops at a time. These are known as drips or infusions. Doctors may use these medications to help with heart function, blood pressure, or pain relief. Some situations require larger IVs to deliver greater volumes of fluids and medications. These special IVs are known as central lines because they’re inserted into the larger, more central veins of the chest, neck, or groin, as opposed to the hands and feet. They’re inserted by a specially trained pediatric surgeon.
  • Arterial lines are very similar to IVs, but they’re placed in arteries, not veins, and are used to monitor blood pressure and oxygen levels in the blood (although some babies may simply have blood pressure cuffs instead).
  • Monitors: Infants in the NICU are attached to monitors so the NICU staff are constantly aware of their vital signs. The nurses will often place the infants in positions that seem the most soothing, like on their tummies or on their sides. The single monitor (which picks up and displays all the necessary information in one place) is secured to your baby’s body with chest leads, which are small painless stickers connected to wires. The chest leads can count your child’s heart rate and breathing rate. A pulse oximetry (or pulse ox) machine also may display your baby’s blood oxygen levels on the monitor. Also painless, the pulse ox is taped to your baby’s fingers or toes like a small bandage and emits a soft red light. A temperature probe, a coated wire adhered to your baby’s skin with a patch, can track your little one’s temperature and display it on the monitor. And unless blood pressure is being directly monitored through an arterial line, your baby will usually have a blood pressure cuff in place.
  • Phototherapy: Often, premature infants or those with infections also have jaundice (a common newborn condition in which the skin and whites of the eyes turn yellow). Phototherapy is used to help get rid of the bilirubin that causes jaundice. The infants might lie on a special light therapy blanket and have lights attached to their beds or isolettes. Usually, they only need phototherapy for a few days.
  • Ventilators: Babies in the NICU sometimes need extra help to breathe. An infant is connected to the ventilator (or breathing machine) via an endotracheal tube (a plastic tube placed into the windpipe through the mouth or nose). Babies who’ve been in the NICU for a prolonged stay — months at a time — may have a tracheostomy (a plastic tube inserted directly into the trachea) that’s connected to the ventilator on the other end. There are many different kinds of ventilators — different situations call for different machines — but they all accomplish the same basic purpose: to help a baby breathe.

Bonding With Your Baby in the NICU

All the machines may seem overwhelming, but don’t let them keep you from interacting with your baby. Bonding with a baby in the NICU is as important as bonding with any newborn, sometimes even more so. You simply have to learn the best way to do it.

Parents can visit and spend time with their NICU babies. The number of people who can visit a baby in the NICU may be limited, but parents are usually allowed to stay most of the day (except when the medical team performs its daily examination and evaluation). Ask the NICU’s social worker about what accommodations are available for parents — cots, recliners, or nearby housing such as through the Ronald McDonald House Charities.

Other family members can visit only during specified hours and only a few at a time. And siblings may not be allowed in the NICU because children have a greater risk of passing on an infection. Check with the hospital staff about which family members can see your baby.

Depending on how sick your child is, you might be able to hold your little one even if he or she is on a ventilator or has an IV. If the doctors feel that would be too much for your baby, you can still hold his or her hand, stroke his or her head, and talk and sing to him or her. A gentle, consistent touch will be the most reassuring.

But for some very premature infants, touching is extremely stressful (if they were still in the womb, they would have little tactile stimulation). In these cases, doctors may suggest that you minimize physical contact but still spend as much time as possible with your baby. Check with the doctor or nurses to figure out how much and what type of contact is best.

A mother who can hold her baby might be able to breastfeed or pump milk and bottle-feed. Most NICUs have screens to allow mothers to breastfeed their babies at the bedside.

Kangaroo care (or skin-to-skin contact) is another option to help you forge a bond with your new baby. Here’s how it works:

  • Place your baby (who’s usually dressed in just a diaper and a hat) on your chest underneath your shirt, so your little one is resting directly on your skin.
  • Loosely close your shirt over your baby to help keep him or her warm.

Doctors and researchers have suggested that skin-to-skin contact can improve babies’ recovery time and help them leave the NICU sooner.

But the best way for parents to help their babies in the NICU is to be there for them and learn to read their behaviors. This will help you to figure out:

  • when your baby is stressed and needs to rest
  • when your baby is ready to bond with you
  • what type of interaction your baby likes (stroking, singing, etc.)
  • what time of day your baby is the most alert
  • how long your baby can respond to you before getting tired

Although you want to interact with your infant, you also want to allow periods of undisturbed sleep. Let your baby set the pace for your time together and you’ll both get more out of it.

Other NICU Basics

Here are some basics to help make the NICU a little less mysterious:

Everyone who comes into the NICU must wash their hands when they enter. (There will be a sink and antibacterial soap in the room and near the entrance of the NICU.) This is a crucial part of keeping the NICU environment as clean as possible so the babies won’t be exposed to infections. Some units require visitors to wear hospital gowns, particularly if a child is in isolation. You may also need to wear gloves and a mask.

Ask the nurses what you’re allowed to bring into the unit — the risk of infection limits what you can leave with your baby. Some parents tape pictures to the isolette or decorate the incubator. If you want to give your child a stuffed toy, the staff may wrap it in plastic first.

When you’re in the NICU, keep noise and bright lights to a minimum. Try not to bang things on the isolette or infant warmer, talk in a loud voice, or slam doors. If you’re concerned about light, ask a nurse if you can drape a blanket partially over the isolette. Most important, let your baby sleep when he or she needs to.

Making the NICU Stay More Manageable

The time when your baby is in the NICU can be stressful — you may be away from your friends and family, including any other children you may have. Your life may seem like it’s been turned upside down as you wait for the day when your baby may be able to leave with you.

You may feel like you eat, sleep, and breathe the NICU 24 hours a day, 7 days a week. And you might feel especially confused and overwhelmed if your baby was unexpectedly born prematurely and/or if the NICU is located far away from your home and your usual support system.

As hard as it may be sometimes, it’s important to pay attention to your own needs and those of the rest of the family, particularly other kids. Make plans for a weekly family activity, and sit down together and talk about how this experience makes you feel. Doing something for yourself can be as simple as taking a relaxing bath, going for a walk, or reading a favorite book for an hour.

You also can turn to other parents in the NICU for comfort. They’ll likely know better than anyone what you’re feeling. Also be sure to talk to the NICU’s social worker about parents’ support groups, where you can share your feelings, worries, and triumphs together. The hospital’s chaplain also might be able to provide you with support and even a shoulder to cry on.

When you take care of yourself, you’ll be more rested and better prepared to take care of your baby. But that care doesn’t have to center on your infant’s illness. Enjoy your new baby, spend time together, and get to know your little one.

Your baby’s NICU stay can be difficult, but also rewarding as you watch your little one grow and progress day after day.

Reviewed by: Jay S. Greenspan, MD
Date reviewed: October 2014