Navigating the NICU

by Jan Taylor, RN

Being pregnant and delivering your new baby is a time of joy and accomplishment.  No parent expects their child to be born with special needs that require extra care and a hospital stay.  This guide to the Neonatal Intensive Care Unit (NICU) can help you to navigate what to expect and how to be an advocate for your child.

Many rare genetic disorders cannot be diagnosed prenatally.  You may have had a smooth pregnancy without complications or maybe you experienced some common complications, but nothing prepared you for having a child that requires an admission to the NICU.  This can be overwhelming and scary.  

Initially, your child may stay with you in your room.  You or your healthcare team may discover that your child is having health care concerns such as breathing difficulty, difficulty feeding, or poor tone.  There may be some features of your infant’s body that look different.  Trust your gut instinct and ask for further evaluation right away if you feel there is a concern that needs further investigation.

Whether your baby is admitted to the NICU right after delivery or later in your stay, here’s what you can expect to happen.  Your infant’s pediatrician will call the NICU specialist known as a neonatologist to have the baby admitted to the NICU for difficulties such as those discussed above.  The baby will be assigned a primary nurse to care for him.  Some NICUs have private rooms and others have all the babies in one room or in small pods.  Infants are placed on a warmer or isolette.  This special equipment can help to keep babies warm if they are experiencing problems regulating their temperature.  They allow easy access for clinicians to observe them and take care of them easily.  The baby will be connected to a cardiopulmonary monitor that constantly keeps track of their heart rate, breathing rate, and pulse oximetry (a measure of how much oxygen is in the blood), and their blood pressure.  These monitors have alarms to let the nurses know if the baby is needs attention right away.

Initially, there may be a lot of things going on and people surrounding your baby.  They will do a full physical assessment, establish intravenous access, draw labs, and stabilize your infant as needed.  

Generally, in the NICU, assessments and infant care are conducted every three to four hours.  This is a time when the nurse will do a physical assessment, check vitals, change their diaper, provide oral care and give feedings.  You can be involved in this care as much as you would like.  This is a good time to bond with your baby and learn to care for them, especially if they are going to have any special requirements when they get home.

Most parents are anxious to get a diagnosis of what condition might be causing the infant’s symptoms.  The doctors will order genetic testing which can take several weeks to result.  They may consult with a geneticist to determine which tests to order or if further testing needs to be done for identification.

Depending on where you live, the hospital you deliver at may not have the highest level of care that your child needs.  They may need to be transferred to get consults from specialists or get surgical procedures.  They will be transferred by ambulance or a helicopter depending on what level of care they need and their current condition.

IV access

Your baby will most likely get an intravenous line.  This is not always the case and will depend on their individual needs.  There are several ways to give babies IV medications and fluids.  The first may be the one you are most familiar with, a peripheral IV, which is a small flexible tube inserted into the hands or feet.  Don’t be surprised if an IV is in the foot, this is an easily accessible and common place for IVs in infants and used because they don’t have to walk about.  Another common area of access is a line in their umbilicus (belly button).  This is where the umbilical cord was attached to the placenta.  It has two arteries and one vein.  A thin catheter will be inserted into the vein using sterile technique.  The artery may also be accessed, so you may see two lines.   Once accessed, it can be used for two to three weeks.  Not only can IV fluids and medications be given through the vein, lab tests can be drawn from the catheter in artery so your baby doesn’t have to be stuck for lab tests each day or more often as needed.  The arterial line can also be attached to the monitor to get a very accurate look at their blood pressure.  

Respiratory (breathing) support

Some infants experience difficulty breathing after delivery.  While in the womb, it is not necessary for them to breath on their own because they are receiving all the oxygen they need from their mother.  Once born, the first breath or cry closes the fetal circulation and they are breathing on their own.  Some infants require help with their breathing if they can’t do it on their own or are experiencing signs of difficulty.  This is known as respiratory distress.

Signs of respiratory distress that your team will be looking for are retractions (sucking in noticed around the ribs and clavicle), tachypnea (breathing too fast), making loud breathing noises, flaring their nostrils, a dusky or blue color to their skin, or apnea (periods where breathing stops).

There are different levels of respiratory support.  If your baby is born with severe distress or unable to breathe on their own, the neonatologist or respiratory therapist may insert a tube called an endotracheal (ET) tube through the mouth and directly to the lungs.  This process is called intubation. This tube will be connected to a ventilator, also know as a respirator, that gives the baby breaths and support until they get better and can breathe on their own or with less difficulty.  Sometimes infants require sedatives or pain medications while on the ventilator to keep them calm so they don’t pull out the tube.  Ventilation can also be achieved in some cases without intubation, called non-invasive ventilation.  Breaths and support can be given through a mask over the nose or prongs in the nostrils.

Another form of support is called a CPAP (continuous positive pressure ventilation).  You may have heard of this or seen an adult wear an apparatus at night if they are diagnosed with a sleep apnea.  This special machine gives pressure into the lungs to keep them inflated so the baby doesn’t have to work as hard to breath.  Once they have stabilized put still need support, they can be converted to a high flow nasal cannula which works the same way using prongs in the nose but provides less pressure.

Some babies continue to need oxygen even after there are no signs of respiratory distress because their bodies are not able to keep their oxygen saturation in a normal range.  This may be weaned before discharge or they may go home with oxygen therapy.

Rarely, some infants require long term ventilator support and may require a surgery called a tracheotomy to make an incision in the neck to place a tube directly into the airway.  This airway is called a tracheostomy.  It is more appropriate the long term need or if a baby has been ventilated for several months and is not showing signs of being able to breathe without support.  Sometimes they will have the tracheotomy long enough that they are discharged with it.

Feeding

Everyone has to eat!  Once babies are on the outside and not receiving nutrition from the mother from the placenta, they must be fed.  This can be accomplished through breastmilk or formula.  When babies that are born with special considerations that make that require extra support or are traumatic, they will generally not eat the first day, sometimes longer depending on their individual case.  The doctor can order a special IV infusion called TPN (total parenteral nutrition) which provides them with all the nutrition they need until they can take all the milk needed to nourish them.  

Initially babies are fed a small amount which increases every day depending on how well they are tolerating the feeds.  As the feed amount increases, the amount or rate of the TPN will be decreased until they are taking in the full amount of milk necessary to meet their caloric needs.

Some babies are able to breastfeed or take a bottle.  Circumstances in which they might not be able to include needed respiratory support and poor tone.  Until they can achieve feeds by mouth, they will have a feeding tube inserted so that the milk can go directly into their stomach.  These are called enteral feeds.  The tube can be inserted through the mouth or nose.  It is secured to the babies face with clear dressings or tape.  The nurse will then be able to use a syringe to connect to the tubing and deliver the milk.  Medications can also be given through the tube.

If your child is experiencing difficulty with swallowing or poor tone, the medical team will use caution and feed them slowly.  This is due to the risk of aspiration of the stomach contents up the esophagus and being inhaled into the lungs.  Specialized therapists can assist in evaluating their abilities and are also great educators in helping parents learn to feed their babies with any special considerations.

If your child is getting close to discharge and unable to eat by mouth, the physician can perform a procedure to surgically place a tube into the stomach so you can feed them directly.  This is called a gastrostomy tube, also known as a PEG tube, G-tube, or button.  There are several different kinds.  Again, you will be trained to care for the tube and taught how to feed them through it.

When it comes to WHAT to feed your child, most hospitals recommend that they receive breastmilk.  If your baby can’t go directly to the breast to eat, you can pump your milk and refrigerate or freeze it.  Breastmilk has a host of good qualities that provide just what your child needs.  The nursing staff will educate you on pumping and storing your milk.  While you are separated from your baby, looking at pictures or videos of them while you pump can help stimulate milk production.  

If you are unable to produce breastmilk for any reason or choose not to, the doctor will prescribe an infant formula that best meets your baby’s needs.  Some formulas are specialized with extra calories and nutrients, some have proteins that are already broken down so they are more easily digested.  Some hospitals offer donor breast milk in place of formula.  There are also additives made from breastmilk that can add extra calories if your baby is born prematurely or has trouble gaining weight.

Please remember that the staff understanding this is an overwhelming time for you.  It is okay to ask the same questions over and over.  Keep your questions on your notepad on your phone or carry around a notebook to jot things down as you think about them.  It’s okay to speak up when you have questions or concerns about their care.  You are ultimately their advocates and bodyguards.  Make sure your voice is heard.

Access the hospital's social worker to get you plugged in with the agencies available to meet your needs.  Make sure you feel comfortable with the plan for home care and have all the medical supplies you need before bringing them home.  Before your child is discharged, establish a relationship with a pediatrician that will be their primary care provider.  Take time to care for yourself.  Ask your family, friends, co-workers, and church members for help.  Don’t be ashamed to let someone clean your house or cook dinner for you.  Access a mental health professional or clergy to talk about your feelings and needs.