INFORMATION FOR PARENTS OF PREMATURE INFANTS
Congratulations on the arrival of your baby!
Premature infants require varying amounts of newborn intensive care and have
a wide range of physical and developmental concerns. The transition home can
be very stressful for families. Premature infants experience many of the same
illnesses and care concerns as full-term infants during the first year, but some
special medical complications may result from their early delivery. The majority
of premature infants thrive and develop normally. Your baby is a unique
individual, so the following information is provided as a general guideline.
The immaturity of your baby’s body systems must be factored in for some
aspects of their care and expectations. Adjusted age means the age they would
have been if they had come at their expected due date. For example: Your baby
was born November 1 but their due date was January 1. On February 1 their
adjusted age would be 4 weeks.
SUPPORT
There are people in your community to help you coordinate some of the needs
your child may have. Planning before hospital discharge can make the return
home less stressful. Some of these are:
Your local Public Health Nurse, ________________________
HCP (Health Care Program for Children with Special Needs) 589-4313
Early Intervention Colorado 589-5135
WIC 589-5860
PRIMARY CARE PROVIDER (PCP)
It is best if your baby has an evaluation with their primary care provider within a
few days of discharge from the hospital. If this is not scheduled for you before
leaving the hospital, it will be important for you to call soon after arriving
home.
BREATHING AND LUNGS
Apnea
Apnea is a condition that occurs in about 20% of premature infants. Apnea is
20-second delays in breathing, during which time the heart slows. It usually
goes away by about 8 weeks adjusted age. Sometimes, medications and/or
apnea monitors are needed. These special situations would be tailored
individually to your baby’s needs. It is recommended that all parents of
newborns take CPR training.
Chronic lung disease
Immature lungs and mechanical ventilation often result in chronic lung disease
in premies. Many will need oxygen at home. When an infant is receiving home
oxygen, oxygen saturations should be check every 1 to 2 weeks. This is usually
arranged through a Home Health Nurse or oxygen supply company such as
Lincare. Any upper respiratory infection (cold) in a premature infant may lead
to a lower respiratory infection (infection in the lungs); so it is very important
to limit exposure to people who are sick, environments where smoking is
present, and avoiding crowds. It is important to frequently wash your hands
and be certain that others who are around your baby wash their hands
thoroughly as well. Contact your doctor if your baby gets a cold. Signs of
breathing trouble that need to be reported to your doctor right away are body
bobbing, retraction of the skin between the ribs when your baby breathes and
dark coloration, especially around the mouth. Although the first two years of
life are very difficult for infants with lung disease, they should improve as they
grow in size and become older.
RSV/Synagis
RSV or Respiratory Syncytial Virus can cause serious illness in infants. Since
premature infants are at greater risk of problems from RSV, they should receive
Synagis injections monthly during the cold and flu season for the first two years
of life. Synagis is a vaccine to prevent RSV in premature infants. Your PCP
should do an insurance prior authorization and make arrangements for the
Synagis to be shipped to your home, then arrangements can be made for the
injections. Home Health nurses are often asked to come to your home to give
the shots.
Flu
All babies should be immunized for flu at 6 months of age and 7 months of
age. The reason for two half-doses given a month apart is to help the babies’
immune system to form antibodies and give good immunity to flu. The
following years, only one dose is needed.
Risk for aspiration
Many premature infants are at risk for aspiration—stomach contents can move
back into the esophagus (the swallowing tube) and into the trachea (the
breathing tube), and into the lungs. This may happen while your baby is still in
the hospital or occur later. The risk for aspiration is because of gastroesophageal
reflux (GER). Thickeners may be needed for your baby’s formula or bottle fed
breast milk to help keep this from happening. Positioning upright during
feeding and after to minimize the amount of reflux and risk for aspiration are
helpful. Sometimes medications are needed. Vomiting, gagging, coughing,
arching, fussiness and feeding refusal should be discussed with your doctor
because these may be signs of GER. GER generally improves in the second 6
months of life.
NUTRITION
Feeding
Feeding your premature baby can be very challenging. Suck, swallow and
breathing coordination make it challenging for these little babies to obtain
sufficient calories for growth. Gastroesophageal reflux (GER) occurs
commonly and further complicates successful and happy feeding. Your
physician, WIC, HCP, lactation consultants and community breastfeeding
support persons can all be sources of information and support. The number of
calories and supplemental nutrients your baby needs at various times will be
determined by your physician . Supplemental vitamins and iron are usually not
required if babies are taking in enough breast milk and proper formula.
Formula being fed at the time of hospital discharge, “transitional formula”, can
be fed up to 12 months of adjusted age. Preterm babies show hunger by
alertness and rooting. Crying is a late sign of hunger. Feeding should not last
longer than 30 minutes, because it can tire the baby.
Solid food
Timing of solid foods will depend on the baby’s growth and development.
Head control, tongue thrust and interest in feeding will need to be evaluated by
your doctor and recommendations made. Solid foods are not usually
recommended before 4 to 6 months adjusted age (that is, 4 to 6 months after
their actual due date).
Water and juice
Water and juice should not be given before 6 months of age.
GER
GER (gastroesophageal reflux) is a common problem in premature babies. It is
discussed above in the section on risk for aspiration.
Anemia
Premature babies often have anemia or low blood count. This usually improves
at about 4 months of age. Your doctor will determine whether your baby
needs additional iron.
GROWTH
Pediatric providers use growth charts to help assess the health and nutritional
status of their patients. Special adjusted charts are used for premature infants.
Although premature infants will be below the standardized growth curve, their
curve should parallel the standardized curve . Weight and head circumference
should be measured at every visit. The head is often the first measurement to
“catch up”. This occurs in the first 3 to 8 months of life. There is rapid growth
between 12 and 18 months of age. Between 6 and 9 years, most premature
children catch up with the rest of their growth. How early, how small, what sort
of premature complications happened to the baby and the height of the baby’s
parents all affect the child’s eventual size.
IMMUNIZATIONS
It is recommended that regular doses of immunizations be given at the same
age for premature infants as non-premature infants. Flu vaccine should be
given at 6 months of age and at 7 months of age, as mentioned above.
Everyone in the household should get a flu shot as well. As mentioned above,
to prevent RSV, Synagis should be given monthly during the cold and flu season
for the first 2 years of life.
PHYSICAL DIFFERENCES
Head
Some premature babies have flattening on the sides of their heads due to
positioning in the NICU. This usually improves by age 3 or 4. The anterior
fontanel or soft spot usually closes between 6 and 19 months adjusted age.
Adjusted age is the age your baby would have been based on their due date.
Example: If your baby was due on January 1, but was born 2 months early, their
adjusted age of 6 months would be on July 1.
Teeth
Teeth erupt according to adjusted age, with the first tooth appearing between 3
and 10 months adjusted age. Premies may have more dental problems based on
the problems of prematurity, so ask your doctor if they feel referral to a
pediatric dentist is needed.
Hernias
Inguinal hernias are common in premies, especially boys. These hernias are in
the bend of the leg at the hip joint. A bulging in that area needs to be brought
to the attention of your doctor right away.
Testicles
Undescended testicles are more common in premature babies as well. This
should be evaluated by a pediatric urologist by 1 year of actual age.
Legs
Some premature infants have some turning inward or turning outward of the
legs. This usually self-corrects when the child is walking well. There are some
other shoulder, leg, ankle and walking differences that can occur, but usually
children outgrow these problems.
Hand preference
If your baby shows a preference of one hand over the other before 18 months
of age bring this to the attention of your doctor.
Skin - Capillary hemangiomas
If your baby has capillary hemangiomas (cluster of blood vessels) of the skin, do
not be alarmed if they get larger and darker during the first year. They will fade
after several years.
Calcium deposits
Tiny, hard bumps where premature infants had heel sticks or IVs are harmless
calcium deposits. They may last several years, but cause no problems.
SCREENINGS
Hearing, vision and developmental screenings are important for each and every
child, but more so for premature infants.
Developmental screening
Age adjusted developmental screening should be done a few weeks after
discharge from the hospital and at intervals until two years of age, then yearly.
The purpose of these screenings is to check your baby’s progress and refer for
intervention early if there are delays. Expressive language delay (talking delay)
is fairly common. Developmental screening is often included in visits to your
primary care provider. Child Find is a resource for developmental screening at
no cost to families—they may be reached at 589-5851.
.
Hearing
All newborns receive hearing screening while in the hospital. Preterm infants
will be screened by the method appropriate to their age and size. If your baby
does not pass this screening, more testing will be needed after hospital
discharge. Report your baby’s response to bells, voices and other sounds to
your provider during appointments.
Vision
Babies born before 32 weeks gestation and babies who received oxygen in the
NICU are at risk for vision problems. These babies will be checked by a pediatric
ophthalmologist while in the NICU for retinopathy of prematurity (ROP). If
there is ROP they will need to be seen again within 2 weeks after leaving the
hospital. These appointments may be needed every one to three weeks as
needed. Infants born early also have more strabismus (cross-eyes) and
nearsightedness and should be seen by a pediatric ophthalmologist by one year
of age and yearly.
CAR SEATS
Your baby’s car seat needs to be the proper size to safely restrain your baby. It
may be necessary to have a special seat for very small infants.
References
Kelly, M M. (2006) Primary Care Issues for the Healthy Premature Infant. Journal of Pediatric Health Care 20, 293-299.
Kelly, M. M. (2006). The Medically Complex Premature Infant in Primary Care. Journal of Pediatric Health Care 20, 367-373.
Kelly, M. M. (2006) The Basics of Prematurity Journal of Pediatric Health Care 20, 238-244..
Ritchie, Susan K. (2002) Primary care of the premature infant discharged from the Neonatal Intensive Care Unit. MCN American Journal
of Maternal Child Nursing 27, 76-84.
Sullivan, M. C. & McGrath, M & Lester, B. (2008). Growth Trajectories of preterm infants: birth to 12 years. Journal of Pediatric Health
Car 2283-93.