Category: 8. Preemie

​Was your baby born more than 3 weeks early? Read on f​or information from the American Academy of Pediatrics about developmental milestones for your preterm baby.

Keep in mind that babies develop at their own speed and in their own way. However​, parents of preemies will need to adjust their baby’s age to get a true sense of where their baby should be in his development.

How to calculate your baby’s adjusted ageSubtract the number of weeks your baby was born early from your baby’s actual age in weeks (number of weeks since the date of birth). This is your baby’s adjusted age (also called corrected age).​​_________________ -_____________________ =___________________Actual ageWeeks born earlyAdjusted age​ NOTE: The number of months is based on a 4-week month. Also, by 2 years of ​age, most children have caught up to the typical milestone range. If your child has not caught up, he may need extra support for a longer period.​Examples of Adjusted Ages​​ Actual AgeWeeks Born EarlyAdjusted Age8 weeks(2 months)3 weeks​​ 5 weeks (1 month and 1 week)16 weeks(4 months)4 weeks12 weeks (3 months)24 weeks(6 months)5 weeks19 weeks (4 months and 3 weeks)​

Your Child’s ​Progress

You know your child better than anyone else. Even with an adjusted age, you will want to see him move forward in his development. For example, your child should progress from pulling himself up, to standing, and then to walking. When you watch him carefully, you will see ways he is growing well. You will also know whether he needs more help.

Remember to take your child to his recommended well-child (health supervision) visits. At each visit, your child’s doctor will check his progress and ask you about the ways you see your child growing. See the next section, Developmental Milestones.

Developmental Milestones

Here is information about how babies and young children typically develop. Examples of developmental milestones for ages 1 month to 6 years are listed. The developmental milestones are listed by month or year first because well-child visits are organized this way.

For a preterm baby, it is important to use the baby’s adjusted age when tracking development until 2 years of age so that his growth and progress take into account that he was born early.

What is your child’s adjusted age?______________________. See milestone for the adjusted age in the next section.

NOTE: Ask your baby’s doctor about Early Intervention (EI)—extra care some babies and children receive to help them develop.

At 1 Month (4 Weeks)

Social

• ​Looks at parent; follows parent with eyes
• Has self-comforting behaviors, such as bringing hands to mouth
• Starts to become fussy when bored; calms when picked up or spoken to
• Looks briefly at objects

Language

• ​Makes brief, short vowel sounds
• Alerts to unexpected sound; quiets or turns to parent’s voice
• Shows signs of sensitivity to environment (such as excessive crying, tremors, or excessive startles) or need for extra support to handle activities of daily living
• Has different types of cries for hunger and tiredness

Motor

• ​Moves both arms and both legs together
• Holds chin up when on tummy
• Opens fingers slightly when at rest

At 2 Months (8 Weeks)

Social

• ​Smiles responsively
• Makes sounds that show happiness or upset

Language

• ​Makes short cooing sounds

Motor

• ​Opens and shuts hands
• Briefly brings hands together
• Lifts head and chest when lying on tummy
• Keeps head steady when held in a sitting position

At 4 Months (16 Weeks)

Social

• ​Laughs aloud
• Looks for parent or another caregiver when upset

Language

• ​Turns to voices
• Makes long cooing sounds

Motor

• ​Supports self on elbows and wrists when on tummy
• Rolls over from tummy to back
• Keeps hands unfisted
• Plays with fingers near middle of body
• Grasps objects

At 6 Months (24 Weeks)

Social

• ​Pats or smiles at own reflection
• Looks when name is called

Language

• ​Babbles, makin​​g sounds such as “da,” “ga,” “ba,” or “ka”

Motor

• ​Sits briefly without support
• Rolls over from back to tummy
• Passes a toy from one hand to another
• Rakes small objects with 4 fingers to pick them up
• Bangs small objects on surface

At 9 Months (36 Weeks)

Social

• ​Uses basic gestures (such as holding out arms to be picked up or waving bye-bye)
• Looks for dropped objects
• Plays games such as peekaboo and pat-a-cake
• Turns consistently when name called

Language

• ​Says “Dada” or “Mama” nonspecifically
• Looks around when hearing things such as “Where’s your bottle?” or “Where’s your blanket?”
• Copies sounds that parent or caregiver makes

Motor

• ​Sits well without support
• Pulls to stand
• Moves easily between sitting and lying
• Crawls on hands and knees
• Picks up food to eat
• Picks up small objects with 3 fingers and thumb
• Lets go of objects on purpose
• Bangs objects together

At 12 Months (48 Weeks, or 1 Year)

Social

• ​Looks for hidden objects
• Imitates new gestures

Language

• ​Uses “Dada” or “Mama” specifically
• Uses 1 word other than Mama, Dada, or a personal name
• Follows directions with gestures, such as motioning and saying, “Give me (object).”

Motor

• ​Takes first steps
• Stands without support
• Drops an object into a cup
• Picks up small object with 1 finger and thumb
• Picks up food to eat

At 15 Months (60 Weeks, or 1 ¼ Years)

Social

• ​Imitates scribbling
• Drinks from cup with little spilling
• Points to ask something or get help
• Looks around after hearing things such as “Where’s your ball?” or “Where’s your blanket?”

Language

• ​Uses 3 words other than names
• Speaks in what sounds like an unknown language
• Follows directions that do not include a gesture

Motor

• ​Squats to pick up object
• Crawls up a few steps
• Runs
• Makes marks with crayon
• Drops object into and takes it out of a cup

At 18 Months (72 Weeks, or 1½ Years)

Social

• ​Engages with others for play
• Helps dress and undress self
• Points to pictures in book or to object of interest to draw parent’s attention to it
• Turns to look at adult if something new happens
• Begins to scoop with a spoon
• Uses words to ask for help

Language

• ​Identifies at least 2 body parts
• Names at least 5 familiar objects

Motor

• ​Walks up steps with 2 feet per step when hand is held
• Sits in a small chair
• Carries toy when walking
• Scribbles spontaneously
• Throws a small ball a few feet while standing

At 24 Months (2 Years)

Social

• ​Plays alongside other children
• Takes off some clothing
• Scoops well with a spoon

Language

• ​Uses at least 50 words
• Combines 2 words into short phrase or sentence
• Follows 2-part instructions
• Names at least 5 body parts
• Speaks in words that are about 50% understandable by strangers

Motor

• ​Kicks a ball
• Jumps off the ground with 2 feet
• Runs with coordination
• Climbs up a ladder at a playground
• Stacks objects
• Turns book pages
• Uses hands to turn objects such as knobs, toys, or lids
• Draws lines

At 2½ Years

Social

• ​Urinates in a potty or toilet
• Spears food with fork
• Washes and dries hands
• Increasingly engages in imaginary play
• Tries to get parents to watch by saying, “Look at me!”

Language

• Uses pronouns correctly

Motor

• ​Walks up steps, alternating feet
• Runs well without falling
• Copies a vertical line
• Grasps crayon with thumb and fingers instead of fist
• Catches large balls

At 3 Years

Social

• ​Enters bathroom and urinates by herself
• Puts on coat, jacket, or shirt without help
• Eats without help
• Engages in imaginative play
• Plays well with others and shares

Language

• ​Uses 3-word sentences
• Speaks in words that are understandable to strangers 75% of the time
• Tells you a story from a book or TV
• Compares things using words such as bigger or shorter
• Understands prepositions such as on or under

Motor

• ​Pedals a tricycle
• Climbs on and off couch or chair
• Jumps forward
• Draws a single circle
• Draws a person with head and 1 other body part
• Cuts with child scissors

At 4 Years

Social

• ​Enters bathroom and has bowel movement by himself
• Brushes teeth
• Dresses and undresses without much help
• Engages in well-developed imaginative play
• Language
• ​Answers questions such as “What do you do when you are cold?” or “What do you do when you are you sleepy?”
• Uses 4-word sentences
• ​Speaks in words that are 100% understandable to strangers
• Draws recognizable pictures
• Follows simple rules when playing a board or card game
• Tells parent a story from a book

Motor

• ​Hops on one foot
• Climbs stairs while alternating feet without help
• Draws a person with at least 3 body parts
• Draws a simple cross
• Unbuttons and buttons medium-sized buttons
• ​Grasps pencil with thumb and fingers instead of fist

At 5 and 6 Years

Social

• ​Follows simple directions
• Dresses with little assistance

Language

• ​Has good language skills
• Can count to 10
• Names 4 or more colors

Motor

• Balances on one foot
• Hops and skips
• Is able to tie a knot
• Draws a person with at least 6 body parts
• Prints some letters and numbers
• ​Can copy a square and a triangle

At School Age

Ongoing Issues Your Child May Face

As preterm babies get older, some of them may face ongoing physical problems (such as asthma or cerebral palsy). They may also face developmental challenges (such as difficulties paying attention or lack of motor control). This may be especially true for babies who were very small at birth.

Once your child reaches school age, it will be important for you to work closely with his teacher and other school staff to identify any areas of concern. They can also help you find the right resources for help. If the school does not have the resources your child needs, his teachers can help you find local groups or programs to help him do well in school. You are not alone! Your child’s teachers and health care team are dedicated to helping you meet all his health and educational needs.

All children will babble before they say real words. All children will pull up to a stand before they walk. We are sure that children will develop in these patterns. However, children can reach these stages in different ways and at different times. This is especially true if they were born preterm. Take some time to think about your child’s development and answer the following questions. Contact your child’s doctor if you have any questions about your child’s development.

Your Child’s Development

• How does my child like to communicate?
• How does he let me know what he is thinking and feeling?
• How does my child like to explore how to use his body?
• Does he prefer using his fingers and hands (small muscles)?
• Does he prefer using his arms and legs (large muscles)?
• How does my child respond to new situations?
• ​Does he jump right in?
• Does he prefer to hang back and look around before he feels safe?​
• How does my child like to explore?
• What kinds of objects and activities interest him?
• What do those interests tell me about him?
• What are my child’s strengths?
• In what ways does my child need more support?

​​​​

Chronic respiratory conditions can cause levels of oxygen in the blood to drop too low. When this happens, it is called hypoxemia. Children with hypoxemia may need to have oxygen therapy at home once they are discharged from the hospital. This helps them maintain normal blood oxygen levels so they can stay healthy.

Understanding ​hypoxemia

Like a fever, hypoxemia is a symptom of an underlying condition–not an illness itself. It can be caused by a variety of conditions and illnesses, not just respiratory ones.

Some of the chronic respiratory conditions that can cause hypoxemia include:

• Bronchopulmonary dysplasia
• Sleep-disordered breathing (sleep apnea)
• Sickle cell disease
• Pulmonary hypertension​ with or without congenital heart disease
• Cystic fibrosis
• Interstitial lung disease
• Children with airway problems
• Children who are (or were) dependent on a ventilator for breathing​

If it is left untreated, hypoxemia can create issues like:

• Poor feeding
• Poor growth
• Poor sleep
• Poor brain development
• Dangerous drop in heart rate (bradycardia)
• Short periods of not breathing (apnea)

Using oxygen at home

Babies who are medically stable and whose parents have been trained can be sent home on oxygen to prevent hypoxemia. Being at home benefits both your child’s and your family’s emotional health. Caring for your baby at home also helps reduce healthcare costs.

For home use, most babies get oxygen through a nasal cannula, a small tube that fits in your baby’s nostrils and secures around the head. In a small number of babies, oxygen is delivered through a tube in the neck called a tracheostomy, a continuous positive airway pressure (CPAP) machine or a ventilator.

Your doctor will prescribe how much oxygen your baby needs. This is usually written as a specific flow rate (for example, ¼ liter of oxygen per minute) when a nasal cannula is used. For a ventilator or CPAP machine, your doctor will prescribe the settings you will need for the machine.

Home oxygen delivery systems

There are three main types of oxygen delivery systems used at home, including:

Compressed gas. This is the most common type. Small, pre-filled tanks of oxygen are delivered to your home before your baby is discharged from the hospital. The number of tanks you get depend on how much oxygen your baby needs. You may also get a big, non-portable gas tank. A representative from the durable medical equipment (DME) company you use will show you how to read the gauges so you can tell when you need to refill your tanks.

Oxygen concentrator. This device separates oxygen out of the air and gives it to your baby. It’s usually sent to your home and it runs on electricity. Someone from the medical equipment company will show you how to use the concentrator. A portable backup oxygen tank is needed, too, for times when your baby isn’t near an electrical outlet and just in case there’s a power outage.

Liquid oxygen. Oxygen that has been cooled to a liquid state is stored in tanks. The liquid changes into gas as your baby breathes it in. One of the reasons this system is not used as often is because liquid oxygen is expensive and insurance companies may not cover the cost. A liquid oxygen tank takes up much less space than a large compressed oxygen tank, but a big disadvantage of liquid oxygen is that it evaporates when it is not being used.

Other equipment

Depending on the reason your baby needs oxygen therapy, an apnea monitor or a pulse oximeter may be used.

An apnea monitor is a device that uses chest leads or best around the chest to monitor your baby’s breathing rate and heart rate. The machine alerts you when your baby’s breathing rate slow or heart rate drops, which could be a sign of respiratory distress. A pulse oximeter is a machine that uses a small band wrapped around your baby’s hand or foot to measure the oxygen levels in the blood.

You will receive instructions on how to use these machines before your baby leaves the hospital. Your doctor will also explain what readings mean you need to call your health care provider. Keep in mind that an alarm may not always signal distress, so it is important to look at your baby’s breathing, color, and activity.

Safety precautions when using oxygen at home

Any time a baby is sent home from the hospital on oxygen, there are safety precautions you should follow:

• Your baby’s room should be well ventilated. You can keep the door open to ensure that the room has good air flow and is not too stuffy.
• There should be no smoking in the house when a baby is receiving oxygen. You can hang a sign on the door to let people know not to smoke in the house. Ask your medical equipment provider or your pediatrician’s office for a sign.
• Oxygen is a flammable gas, so when your baby is on oxygen, keep your baby at least six feet away from open flames, heaters, fireplaces, radiators or gas appliances with pilot lights. Make sure you also store all oxygen tanks at least six feet away from any source of heat or fire.
• Do not use rubbing alcohol, petroleum jelly or spray cans near a baby on oxygen. Avoid using hand sanitizer nearby,  too.
• Make sure that the smoke detectors in your home are working and periodically review your home fire escape plan with your family.

What else to expect

Learn before you leave. In the last few days before your baby comes home from the hospital, you should get familiar with the equipment you will be using at home, as well as how to care for your baby. The best way to learn all this is by spending as much time as you can caring for your baby at the bedside while in the neonatal intensive care unit NICU. This will allow you to learn from the health care team and practice while you have experts available to answer questions. Some NICUs have a room for parents to stay with the baby the night before going home to help with the transition.

Home nursing visits. Babies sent home on oxygen may have home nursing visits arranged through their insurance by the doctor. The nurse will check on your baby and make sure you are using all your equipment properly. He or she will also be happy to answer any questions you might have about caring for your baby. Most babies are weaned off oxygen gradually based on recommendations from your child’s doctor and a lung specialist called a pulmonologist.

Alert essential services. Make sure your health care team provides letters to give to your telephone company, electric company and local emergency medical services (EMS) to alert them that you have a child with special needs in your home. Keep the phone numbers to your physician, EMS or ambulance service in a convenient and easily accessible place in your home in case of any life-threatening emergencies.

Remember

While it all may seem overwhelming at first, you will become a pro before you know it. Contact your child’s doctor or oxygen equipment provider with any questions.

“In the beginning, you expect complications and scary moments. In intermediate care, setbacks are more surprising, more disappointing, because you think those times are behind you.”

When your baby is stable enough to graduate to intermediate care, she is generally considered past the real dangers that may have been present while she was critically ill. A few medical conditions can affect progress, but most cause only a temporary setback. Rarely, these conditions can mean readmission to the NICU.

Apnea and Bradycardia

Apnea, bradycardia, and desaturation often occur in babies born at less than 32 weeks’ gestation, and episodes may continue in the intermediate care nursery. The staff will monitor the frequency, intensity, and duration of the episodes. If your baby was not having apnea or bradycardia in the NICU or if the frequency or intensity of the episodes increases now, this may be a sign of illness. If this happens, the physician, neonatal nurse practitioner, or physician assistant will order tests to find the cause. If the apnea and bradycardia are because of immaturity, your baby may receive medication (theophylline or caffeine) to decrease the episodes. If your baby is put on medication, drug levels in the blood may be checked periodically. As your infant grows, the doctor adjusts the dosage or allows your baby to outgrow the dose if apnea and bradycardia resolve. Unless they are a side effect of another illness, apnea and bradycardia often resolve around your baby’s original due date. If your baby is ready to go home before that date, mild apnea and bradycardia may need to be managed before discharge. Management of the situation depends on the philosophy of your baby’s neonatologists. Your baby may require continued monitoring in the hospital, may require testing with a pneumogram before discharge, or may be a candidate for home monitoring and/or medication. If your baby goes home with a monitor, you’ll be instructed in monitor use and infant CPR.

Infection

Your recovering baby is prone to many kinds of infection. Despite the best precautions of staff and visitors, infections do occur. Some infections, such as thrush, are minor and respond to treatment rapidly. Others can be more serious.

Thrush

Your baby might get a yeast infection—called thrush—in her mouth. It looks like thick white patches on the tongue or gums. You cannot wipe these patches off. Infants with thrush often have feeding problems because of tenderness in the affected area. Thrush is usually treated with oral medication.

Other Infections

Signs of other infections may include feeding difficulties (intolerance, vomiting, abdominal swelling, or poor feeding), decreased activity, increased frequency of apnea and bradycardia, unstable temperature, and increased work of breathing. When the health care team becomes aware of these signs, your baby may have blood work, a spinal tap, a urine culture, or x-rays to identify the cause of infection. Intravenous antibiotics may be started, and your baby may be made NPO (no nutrition by mouth) as a precaution. Rarely, your baby may be transferred back to the NICU for respiratory support, for increased monitoring, or simply for IV medications. It is also rare that a baby overwhelmed by an infection will die. Most infections respond well to treatment, and your infant will be back to normal in 2 or 3 days.

Hernias

Preterm infants are at risk for hernias—protrusion of a body part (such as a loop of intestine) through a muscle weakness or unusual opening inside the body. If your baby develops a hernia, most eventually require surgical repair.

Inguinal Hernia

The most common hernia is called an inguinal hernia. This condition occurs most often in males and usually presents as a bulge in the groin, especially after crying or straining during a bowel movement. Sometimes girls get inguinal hernias, which cause a bulge, or swelling, above or along the labia. Usually a boy’s testicles stay in the inguinal canal (high in the groin, not down in the scrotal sac) until about 32 weeks’ gestation. At that time, the testicles descend into the scrotum. But in preterm babies, part of the intestine may push through a remaining gap in the muscle wall into the scrotum. This may affect one or both sides and appears as a swelling above or in the scrotum. As long as the hernia is reducible (the intestine can be easily and gently pushed back through the opening), immediate surgical correction is not necessary. Surgery to repair the hernia may occur before discharge or around the time your baby weighs around 2 kilograms (or 4½ pounds). Surgery can also be postponed until the child is older or requires other surgery. If the hernia becomes incarcerated (trapped in the scrotum), the scrotum will become blue and painful, and immediate surgery is necessary.

Umbilical Hernia

Another area where the muscle may not close properly is around the umbilical cord. An umbilical hernia causes the umbilical area, or belly button, to push outward when the baby cries. As long as there is no redness or discoloration, there is no cause for concern. This condition usually corrects itself as your baby grows and the abdominal muscles strengthen and thicken. In general, surgical correction is not recommended before the age of 3 to 5 years.

Gastroesophageal Reflux

A condition known as gastroesophageal reflux (GER) occurs when the opening at the entrance of the stomach has not matured and allows food to move back up the esophagus. A baby with GER might vomit 3 or 4 times per day and loses a significant amount of her feedings. She may have episodes of apnea, bradycardia and desaturation during feeding, signs of discomfort during feeding, difficulty advancing volume, poor digestion, and poor weight gain. Many preterm babies show symptoms of GER and most outgrow it as they reach term age (their original due date).

A variety of factors may contribute to the dysfunction of the junction at the esophagus and stomach. Reflux may be caused by respiratory distress that causes the diaphragm and abdominal muscles to work harder than they should, positioning an infant on her back, bearing down with abdominal muscles during movement, and large volumes of food causing pressure on the junction at the esophagus and stomach. Feeding small amounts more frequently, feeding continuously by pump (although gavage tubes are associated with increased reflux symptoms), raising the head of the bed, or placing the baby on her tummy after feeding may help alleviate this condition. If tummy positioning is used, continuous cardiorespiratory monitoring must be used and the baby must be transitioned to back sleeping prior to discharge to reduce SIDS risk. If the condition is severe, treatment may include medication or surgery. The surgery to correct reflux is called fundoplication.

Anemia

While your baby is in intermediate care, blood counts (hematocrit or hemoglobin) will be checked weekly or as the baby’s situation requires. Preterm NICU babies are at risk for anemia (low red blood cell count) because their NICU stay required drawing of blood for testing and evaluation of treatment, and the body system that makes red blood cells (RBCs) is immature.  Rapid growth also causes a decrease in blood counts. Babies often cannot replenish their  blood supply fast enough to keep up with the necessary blood tests in the NICU; therefore, blood transfusions may be given to correct anemia. In some institutions, the medication Epogen (EPO) is given to help stimulate RBC production.

Anemia can cause low oxygen and glucose levels in the blood, which can cause the tissues and organs to function improperly. Infants with anemia may appear pale and lethargic, have an increase in apnea and/or bradycardia, and not eat well. Infants on respiratory support may have regular transfusions. Keeping the blood count normal is important for keeping oxygen levels normal and allowing timely weaning from oxygen.

Most babies who have graduated to intermediate care are able to maintain their oxygen levels without help, so they shouldn’t require many transfusions. In intermediate care, blood counts are allowed to drop lower than in the NICU to stimulate the baby’s own RBC production system. When an infant receives transfusions, the production of RBCs in the bone marrow is not stimulated. A low RBC count is the necessary stimulus to trigger production. As with all immature systems, full functioning takes time.

When the hemoglobin and hematocrit drop, the body system that produces RBCs is stimulated to replenish the lost supply. A blood test called a reticulocyte count (retic) shows the amount of developing RBCs produced. If the retic count is within normal limits, transfusion will be postponed in the hope that the baby’s system will do its job. In most infants, the process corrects itself without complication. Occasionally a baby may be transfused in the week before discharge. In that case, your health care provider’s office may schedule follow-up lab work after discharge.

​​Premature babies often need tests or treatments in the hospital. Some tests and treatments have side effects and risks. So it’s important to get just the ones your baby needs.

Here are some com­mon tests and treatments your baby may not need.

Heartburn medicine for premature babies.

Premature babies may stop breathing for 15 to 20 seconds at a time during sleep. These breathing pauses tend to go away as the baby develops.

In some cases, doctors give these babies heartburn medicine. They do this because many babies have reflux (“spit up”). Doctors used to think that reflux made the breathing problem worse. But there’s little evidence that heartburn medicine helps. In fact, the medicine may be harmful to newborns.

Antibiotics for babies without infections.

When newborns are at risk for infection, doctors may give them antibiotics right away, before they know if the baby has an infection. Doctors do this because blood test results can take 2 days, and it is better to be safe.

The problem is that some babies get antibiotics for too long, even though blood tests are negative and the baby has remained well. In this case, antibiotics won’t help your baby. Also, long-term use of antibiotics in premature babies can cause serious problems, even death.

So, ask your doctor if your baby really needs to continue on the antibiotics.

Pneumograms before babies come home.

Most premature babies stop having breathing pauses by the time they reach full-term develop­ment. If they don’t, some doctors may order a pneumogram. This is a test that records a baby’s breathing, heart rate, and oxygen level during sleep. In some cases, this test may be helpful.

But the test does not help prevent dangerous breathing problems in premature newborns. And the test can lead to more tests and unnecessary worry for parents.

Daily X-rays for premature babies.

Some premature babies need breathing tubes, and some need catheters. Catheters are tubes put into a vein to give medicine, nutrition, and fluids.

From time to time, the hospital takes an X-ray to make sure that the tube hasn’t moved. But babies should not get these X-rays every day.

• There is no evidence that a daily X-ray helps prevent any problems.
• Daily X-rays give unnecessary radiation. This may increase the risk of cancer, especially in babies.

Brain MRIs before babies come home.

Premature babies are at risk for problems with brain development. Some doctors check for these problems before sending the baby home. Some may do this using magnetic resonance imaging (MRI), a test that takes detailed pictures of the brain. But:

• An MRI can’t really tell you how your child’s brain will develop over time, especially if the test is abnormal.

Brain development problems can be identified during routine tests at the pediatrician’s office.​

Maintaining body temperature involves calories and oxygen. The more energy your baby uses to keep warm, the less he will have for growing and healing.

Your baby will progress from the incubator or radiant warmer to an open crib based on his ability to regulate body temperature.

Regulating Body Temperature

This ability depends, in part, on gestational age and weight. The transition is usually gradual, but your baby may be returned to the warmer environment at the first sign of inability to maintain temperature. It’s not unusual for a baby’s weight gain to slow, or even for weight to drop, for a day or so during the weaning process to an open crib.

Some babies go home directly from the NICU, but most NICU babies are eventually transferred to a step-down unit for less intensive care before discharge. The step-down unit may be within the NICU itself or very nearby. Some NICUs transfer babies to a community hospital, possibly closer to your home, for continued convalescence.

Knowing what to expect in the way of routines, staff members, and your role during this period of hospitalization will help alleviate your stress and enable you to participate in your baby’s care more fully.

Intermediate Care Defined

The name of the step-down unit and the babies who qualify for admission vary from hospital to hospital. The unit may be called intermediate care, NICU step-down, special care, growing preemie unit, Level II unit, or something else. Whatever the unit is called, your baby’s transfer means that she has matured beyond the need for intensive life support. With a few rare exceptions, your baby is past the life-and-death crises and is on the road home. Parameters for intermediate care vary widely among nurseries but, in general, your baby is off the ventilator and now needs less intense nursing care and observation.

As your NICU nurse prepares you for your baby’s transition to this new phase of care, she may describe the intermediate care nursery as a quieter place, more able to work with your baby’s sleep-wake cycles and abilities to interact with her less hectic surroundings.

Because growing babies need a lot of undisturbed rest, feeding time is usually the best time for interaction; therefore, your nurse may suggest that you begin to spend this time with your baby, learning about her emerging personality, cues, and behaviors. Your baby no longer requires frequent intensive nursing care, so expect her nurse to have 3 to 4 other babies under her care. Some intermediate care settings keep the same nursing staff (your baby may even keep the same primary nurse) for the entire hospitalization. Or the nurse in the intermediate care unit may supervise specially trained nursing assistants who help with feeding, vital signs, and other care tasks. Occupational or physical therapy personnel may be more visible in intermediate care as they work with you and your baby on feeding skills, positioning, comforting, and other behavioral and physical tasks. In intermediate care, there is generally a greater focus on parent involvement.

Learning to care for your baby becomes the focal point of your visits. When you call to check on your baby in intermediate care, there will most likely be a different focus on what is reported. Unless some complication occurs, your baby’s condition will change much less often than in the NICU. Lab work, x-rays, and other tests are less frequent in intermediate care, and monitor alarms are heard less often. The staff focus on your baby’s progress and your plans for actively participating in care and discharge planning.

Emotional Changes

In the NICU, you probably developed trusting relationships with members of the NICU staff—usually those staff who always discussed your baby’s case openly and honestly and were willing to listen to your feelings and concerns. If your move to the intermediate care nursery means a change of personnel, you’ll probably miss the comfortable working relationships you shared. You and your baby will need some time to get acquainted with a new team and to learn how to communicate well with that team. Eventually, you will develop good communication and trusting relationships with staff members in the intermediate care nursery, just as you did with those in the NICU.

As things slow down, you may find that emotions from the past weeks are catching up with you. Your baby’s major crises are over, but as you start to relax, you may also begin to feel the emotions that you’ve been too numb to acknowledge until now. You may have been too frightened or overwhelmed to express some of those feelings, but now they seem to come tumbling out at your partner, the nursery staff, and anyone else who is willing to listen. This outpouring will slow down eventually.

There are ways to gain control over these emotions. Think about what you are feeling. See your behavior as an expression of overwhelming emotion. Talk to a friend, your partner, or a counselor. Write in a journal or talk into a tape recorder. The length of time this process takes depends on the length of time your child was in the NICU, how early in your pregnancy your infant was born, how many life-and-death crises your baby experienced in the NICU, your support system, and your personal coping style. Ask your baby’s nurse if the hospital has a support group, social worker, clinical nurse specialist, chaplain, or other person who supports the emotional needs of parents. Ask if they have “graduate” NICU parents who volunteer to talk with families about their similar NICU experiences. Do not be afraid to share your feelings with the doctor, nurse practitioner, physician assistant, or bedside nurse caring for your baby. Everyone is available to help. These emotions and feelings are normal. Keep in mind that what you have been going through would be very stressful for any parent. Find coping skills that work for you.

By now you’ve observed and learned so much about NICU practices, your biggest challenge in adjusting to this new unit will be accepting that different is not necessarily wrong. Adjusting to new faces and new routines will take time. Your communication techniques may need review and fine-tuning as you negotiate a new plan of care for your baby. If you’re not given an orientation list for the intermediate care unit, review your original NICU orientation list and ask about the plan for the remainder of your baby’s hospital stay. This effort will communicate to staff that you’re interested in how this new unit works. Most importantly, it will help you get comfortable so you can focus on learning to care for your baby before she is discharged. In addition to learning about the new unit routines, communicate your baby’s likes and dislikes, including her typical behavior patterns, with the staff. They will be most appreciative of the information during this period of adjustment for both you and your baby.

Don’t expect your preterm baby to sleep through the night for many months. Unlike a term baby, who might sleep a full 6 to 8 hours at night by 4 months of age, your baby may not accomplish this task until 6 to 8 months or later.

During this transition period, play with your baby during daytime awake periods. Keep night feedings as quiet and as businesslike as possible, with minimal or soft lighting. This will help your baby learn the difference between day and night and may help you get much-needed sleep at appropriate hours. But remember, it may take several weeks before your baby gets her days and nights straight!

Following a Routine

Babies vary in how easily they settle down to sleep. Follow the same steps each time you put your baby down to sleep to help her learn a personal going-to-sleep routine. At first, you’ll probably jump up and go to your baby at the first crying sound. But as you get to know each other and as you notice your baby’s self-comforting skills, you need to allow your baby to console herself and go back to sleep on her own.

Self-Comforting

Self-comforting is an important skill for your baby. Beginning early to teach your baby to fall asleep on her own will ease you through the later developmental stage (at 6–9 months corrected age) when sleep problems may emerge once again.

Setting the Mood for Sleep

To help your baby rest, try playing the radio softly or placing a ticking clock in the room for those first few weeks at home. In addition, a soft night-light may be reassuring to you both. Let your baby suck on her fist or a pacifier if this seems calming.

“My husband has never been comfortable asking for directions or help of any kind. But even he has to admit that the support staff who guided us through our NICU stay were necessary and important for a good experience.”

It takes a village to raise a child, and in the NICU, a “village” supports the medical team, nursing team, and your baby. Again, each NICU may have some or all of these team members, and not every baby will require the services of every one of these team members.

Respiratory Therapist

If your baby needs help breathing, a respiratory therapist, also known as a respiratory care practitioner, will help manage the appropriate equipment and associated monitoring devices. Some respiratory therapists are trained in endotracheal intubation and may also draw blood to obtain a blood gas from your baby.

Nutritionist

The nutritional aspects of your baby’s care may be supported by a pediatric or neonatal nutritionist who will help optimize your baby’s growth and development and may recommend specific additives for your baby’s breast milk or formula.

Lactation Specialist

Breastfeeding support may be provided by lactation specialists, or by lactation nurses or doctors who have specialized training within your NICU. The lactation specialist manages complex problems of breastfeeding mothers and babies.

Infant Developmental Specialist

Infant development specialists are individuals with training who work with the NICU team to assess your baby’s development. These services may be provided by a variety of people, all ensuring that your baby’s environment in the NICU and after discharge is optimal for his or her development.

Pediatric/Family Clinical Psychologist

Clinical psychologists may also be available in your NICU to help the team provide support to you. These specialists focus on supporting parents as they develop relationships with their infants and with the NICU staff.

Social Worker

A social worker in the NICU will help coordinate a myriad of services including your own support structure, financial and insurance arrangement, and even housing and transportation needs.

Parent Educator

Your unit may also have a parent educator, usually a nurse, who provides information and instruction for NICU families. This education is usually offered in a group setting, such as through scheduled classes.

Pharmacist

A pharmacist with specific training in neonatal drugs and doses helps ensure the safety of medications and IV nutrition used to treat your baby.

Therapists

Occupational, physical, and speech therapists all have special skills to help foster your baby’s neurologic and physical development. These therapists may help with establishing a nipple-feeding program for your baby and may also recommend a range of exercises and stretches for your baby.

Case Manager/Discharge Planner

Some NICUs use the services of a case manager or discharge planner who may follow your baby’s hospital course and ensures that orderly progress is being made toward discharge. Either of these people may also help arrange for your baby’s transfer to a NICU closer to home.

Medical Students/Nursing Students

If your baby’s NICU is part of an academic medical center, medical students and nursing students may also be present in the unit. These students are not yet physicians or RNs but have typically completed all of their core medical or nursing training. Medical and nursing students are closely supervised while working in the NICU.

Chaplain

Your NICU may also have a chaplain or spiritual representative from a specific religion. If one is not present in the NICU, you can often request a member of your religious affiliation to visit the NICU. The chaplain’s role is not to convince you to believe or practice religion in any particular way, but rather to help you use any spiritual resources comfortable for you.

Research Investigators

Many NICUs participate in research projects to improve the quality of care for babies or to better understand and treat the diseases of newborns. To help facilitate these research projects, your NICU may have one or more clinical investigators (nurses and/or physicians) present who can discuss whether your baby might be eligible to participate in one of these research projects. Rest assured that your choice to participate or not participate in any research will not change the quality of your baby’s care or the devotion of the team in providing that care.

Parent-to-Parent Providers

Your NICU may have a team of parents, some of whom are still in the unit and others of whom have gone home with their babies, who serve as a resource to newer parents in the NICU. These “veteran” parent groups do not provide any care for your baby; rather, they help provide care for you. Referred to as family or parent support groups, parent-to-parent providers, or peer advocates, these parents have “been there” and know the details specific to your unit. Your unit may also participate in the March of Dimes NICU Family Support Program. Whatever the name of these parents in your NICU, they can provide a listening ear, validate your experiences, provide suggestions on who can best answer your questions, and remind you that you are not “in this” alone.

Unit Clerk

When you enter the NICU, you are greeted by the unit clerk who handles the flow of people, paper, and information into and out of the NICU. This person may be identified by other titles, such as unit secretary, patient services coordinator, or health unit coordinator.

Financial Counselor

Your hospital’s financial counselor can answer questions concerning your hospital bill, help you submit your bill to the appropriate agencies for payment, and set up a payment plan if you are responsible for any portion of the bill.

Simulation Center Staff

Your NICU or hospital may have a simulation center where both care team members and parents can undergo simulated experiences with mannequin babies to improve care and learn necessary skills for taking care of the baby after discharge. You may learn specialized care techniques for your baby in one of these simulation centers or simply have a chance to practice CPR or rescue breathing as part of routine first aid training. If your NICU has a simulation center, you may meet a simulation center coordinator or coach sometime during your baby’s hospitalization.

Still More People

Other personnel in the NICU may include laboratory technicians (trained to obtain blood samples); x-ray technicians; ultrasound technicians; patient care associates who help keep bedside supplies stocked; and others, including housekeepers. Sometimes staff members are cross-trained; in addition to their specialty role, they can help perform unit duties such as taking routine vital signs, administering uncomplicated feedings, and transporting patients to different areas of the hospital. Whether providing direct care or mopping the floor, all hospital personnel provide vital services for your baby’s care.

Although many people think all nurses do the same things, nothing could be further from the truth. All nurses do have knowledge that provides the foundation for nursing practice (achieved through either an associate’s or bachelor’s degree), but most also choose an area of specialty and acquire additional skills and expertise specific to that area. In addition, a nurse may hold an advanced master’s or doctorate degree.

Your baby’s nurse is at the bedside more than any other professional. She is your baby’s caregiver and advocate, as well as your primary source of information.

Registered Nurse

The person who provides the moment to moment care for your baby (besides you!) is your baby’s bedside nurse, usually a registered nurse (RN). A neonatal nurse is an RN who is highly educated to provide nursing care for infants and their families. The nurse caring for your baby learned NICU clinical skills through an extensive orientation program and clinical preceptorship in the NICU. You may see an RN with the designation “RNC-NIC,” which means the nurse has also passed a national specialty examination in neonatal intensive care nursing.

This person may be assigned to care for just your baby or for up to 3 additional babies. The staffing assignment is determined by the skills of your nurse and how much support your baby requires at that time.

Nurses work collaboratively with physicians and other members of the health care team; they are not assistants. Nurses function independently, and their specific roles vary depending on the setting. An RN may supervise a team of other professionals and assistants who help care for patients.

Neonatal nurses are at your baby’s bedside 24 hours a day. They assess your baby’s current condition and progress, carry out the physician’s orders, and notify the physician team (physician, neonatal nurse practitioner [NNP], or neonatal physician assistant) of any changes in your baby’s status. The RN may make recommendations to the physician or the team based on his or her assessment of your baby. The RN also plans and implements all nursing care, such as bathing, feeding, positioning, administering prescribed medications, and managing intravenous (IV) and arterial lines. In addition, RNs are very involved in parent education and discharge planning.

The nursing team is supported and led by a charge nurse who oversees the nursing operation for each nursing shift. Behind the scenes, you will often find a NICU nurse manager who provides nursing supervision and leadership for the whole unit and all of the nursing staff.

Clinical Nurse Specialist

A clinical nurse specialist (CNS) (or clinical nurse educator) helps advance the practice of the nursing team. A CNS is an RN with an advanced degree who acts as an expert and resource person for nursing staff. Clinical nurse specialists are involved in many different areas on the unit, including staff education, nursing research, quality improvement, consultation, direct patient care, and program development. Together with the medical team and the nursing staff, the CNS assists the NICU team with your baby’s care by making specific recommendations and offering new ideas or techniques to ensure the best possible plan of care.

Licensed Practical Nurse/Licensed Vocational Nurse

A licensed practical nurse (LPN) or licensed vocational nurse (LVN) has graduated from a state-approved technical school or community college and must pass a national written examination. The LPN/LVN provides basic bedside care and works under the direction of an RN.

Your baby may have more medical professionals than you have encountered in your entire lifetime. In every NICU, a member of the medical team is present in the NICU 24 hours a day, and a neonatologist is always on-call for that unit.

Neonatologist

A neonatologist is a physician who specializes in the diagnosis and treatment of sick newborns. Neonatologists have 3 years of specialized training, specifically to treat newborns, beyond that required for general pediatricians. The neonatologist is usually the most knowledgeable member of the team treating your newborn and directs the medical care of your baby. The lead physician in most NICUs is a neonatologist and, in the hierarchy of the medical team, is referred to as the attending physician.

The neonatologist’s availability varies from NICU to NICU. In some units, care is directed by a team of neonatologists. That team then shares the responsibility for providing care on a 24-hour basis with a different member of the team being responsible for your baby’s care each day. In other facilities, especially in large centers that are also accredited for training the next generation of neonatologists or pediatricians, the neonatologist may be present in the unit for only a portion of each day (and will usually be present during patient rounds). During rounds, members of the health care team discuss and review your baby’s current condition and determine a medical plan of care. The neonatologist makes recommendations to ensure that the NICU team provides the best care for your infant based on a daily plan. If unexpected problems arise, the neonatologist is available to the health care team 24 hours a day.

The neonatologist is responsible for overseeing the medical decisions regarding your baby. The attending neonatologist may also supervise other physicians, some of whom are in varying levels of their professional training, including residents, and fellows. In many large centers the medical team is supported by clinical directors or chiefs of the NICU who may not have direct care of your child at all times but who work with the entire team of neonatologists as well as the nurse managers to oversee the general operations of the whole unit.

Neonatal Nurse Practitioner

An NNP or advanced registered nurse practitioner (ARNP), also called an advanced practice registered nurse, or APRN, is an RN who has completed advanced education and training in the care and treatment of newborns and their families. In most institutions, a nurse practitioner must have a master’s degree in nursing. Working in collaboration with a neonatologist or attending physician, the NNP is an expert in neonatal resuscitation; examines, diagnoses, and designs a care plan for your baby; and serves as an education resource for all members of the NICU team. The NNP may also perform procedures such as intubation, central line placement, chest tube insertion, and lumbar puncture. In most US states, NNPs (and ARNPs or APRNs) may prescribe medications.

Neonatal Physician Assistant

A neonatal physician assistant (NPA) is a specialist who has earned a certificate or degree from an accredited school and passed a state licensing examination. An NPA has the same general background as other physician assistants, but has completed education and training in the care and treatment of infants and their families. The NPA works under the supervision of a neonatologist or attending physician. An NPA performs delivery room resuscitation and has been trained to assess, diagnose, and design a care plan for your baby. The NPA may also perform procedures such as intubation, central line placement, chest tube insertion, and lumbar puncture and may serve as an education resource for members of the NICU team. An NPA may prescribe medications in most US states.

Hospitalist

A pediatric hospitalist is a physician who has completed a pediatric residency and has developed specific skills and interest in caring for infants and children who require inpatient hospital care. Some hospitalists choose to spend part or all of their time working in a NICU. Hospitalists work under the supervision of a neonatologist and are capable of performing many of the procedures and care for babies in the NICU.

Resident

A resident is a physician who has graduated from medical school and is enrolled in a hospital-based program of specialized training called a residency program. Residency programs vary according to specialty (pediatrics, obstetrics, surgery, and so on) and in the amount of time required to complete the training. Pediatric residencies usually take 3 years to complete. A resident can be in his or her first year of training or a physician in the second or third year of the program. You may also hear a resident called an R-1, R-2, or R-3 (denoting a first-, second- or third-year resident) or PGY-1, PGY-2 or PGY-3 (for postgraduate year 1, 2, or 3) or PL-1, PL-2, or PL-3 (for post-licensure year 1, 2, or 3). Most residents in the NICU are enrolled in pediatric residencies, but residents from other specialties, such as family practice, anesthesia, or obstetrics, may be involved as well. Residents are usually very visible on the unit. They are closely involved with your baby’s daily care as members of the medical team. Residents assess your infant daily, then plan and revise the medical care. Residents perform many NICU procedures, such as intubation, placement of IV and arterial lines, lumbar puncture, and chest tube insertion Resident teams may be composed of members in varying years of their residency training; often senior residents will help supervise junior residents.

Neonatal Fellow

A neonatal fellow is a physician who has completed medical school as well as a pediatric residency and is currently training to become a neonatologist. The fellow works closely with the attending neonatologist and may be more visible on the unit than the neonatologist.

Responsibilities of a fellow vary widely. In some units, a fellow may be there all day overseeing the daily plans for each baby in the NICU and at delivery room resuscitations. In other units, the fellow makes rounds in the mornings and provides consultation for residents, NNPs, and NPAs during the rest of the day or night.

Pediatrician

A pediatrician is a physician who has completed a pediatric residency and who provides medical care for children from birth to 18 years (sometimes up to 21 years). In some hospitals, pediatricians with interest in the care of babies with special needs may provide care for babies in the NICU. Other pediatricians may not have special training in NICU care and may therefore refer your baby to a neonatologist. After your baby is discharged from the NICU, your pediatrician commonly becomes your baby’s primary care provider.

Depending on the needs of your baby, a family practitioner may also be your baby’s primary care provider.

Other Medical Personnel

Your baby’s medical team may call on other specialists to assist them in providing care for your baby. These consultants may be present in your hospital, available on an intermittent basis, or by telephone.

• Cardiothoracic surgeon: specializes in performing surgery on the heart
• Pediatric cardiologist: specializes in diagnosis and treatment of heart problems (nonsurgical)
• Pediatric gastroenterologist: specializes in treatment of stomach and intestinal problems (nonsurgical)
• Geneticist: studies birth defects and their causes
• Pediatric hematologist: specializes in diagnosis and treatment of blood problems
• Pediatric nephrologist: specializes in the diagnosis and treatment of kidney problems
• Pediatric neurologist: specializes in diagnosis and treatment of the nervous system
• Neurosurgeon: specializes in surgery of the brain and nervous system
• Pediatric surgeon: specializes in performing general surgery for newborns and children
• Otolaryngologist: specializes in ear, nose, and throat surgery
• Pediatric pulmonologist: specializes in diagnosis and treatment of certain lung conditions
• Urologist: specializes in surgery of the urinary tract