In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.
In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.
One truly overwhelming aspect of having a child or children in NICU (neonatal intensive care unit) care is the quantity of new terminology thrown around by the medical staff. The Moms put our heads together and came up with a list of NICU terms that many of us had to learn.
Adjusted age: The age that your premature child would have been if he were born full-term. You and your doctor may choose to schedule your preemie‘s vaccinations based on her adjusted age rather than her birth age. It’s often easier to answer strangers’ questions about how old your babies are with their adjusted age rather than going into the details about why they are so small for their birth age. Many preemie parents abandon the adjusted age around age 2, but it depends on how early their children were born and the extent of any delays or disabilities.
Apgar score: A number between 0 to 10 that describes the condition of a newborn (full-term or premature) immediately after birth. The Apgar test is usually given twice, 1 and 5 minutes after birth. Medical professionals score each of 5 criteria from 0 to 2:
- heart rate
- skin appearance/color
- muscle tone
Apnea: Breathing stoppage. Apnea of prematurity is not uncommon, and usually involves a baby not breathing for 15-20 seconds. A gentle touch, often a massaging of the chest, is usually enough to end an apneic episode. Since full-term infants the same gestational age as a preemie don’t need to breathe in utero, premature infants can sometimes “forget” to breathe. It’s scary, but not unusual. The vast majority of preemies outgrow apnea of prematurity by their due date.
Cares: The three-hourly basic routine of feeding, diaper change, temperature measurement, weighing, and blood sugar analysis. Many NICUs will allow parents to perform all aspects of their babies’ cares once they are stable.
Car seat test: Monitoring your baby’s vital signs for a 60 to 120 minute period in the car seat in hospital to confirm that he or she can manage the drive home.
Corrected age: See “adjusted age.”
Desat/desaturation: Decrease in the oxygen saturation level of the blood, specifically hemoglobin.
Developmental delay: Ongoing delays in reaching milestones.
Failure to thrive/FTT: Inadequate weight gain and physical growth in children. Being small for his/her age does not equate to failure to thrive as long as a child is growing. If a child’s growth follows the growth chart (e.g. stays at 2nd percentile over time), being underweight does not equate to FTT.
Gestational age: The age of a baby calculated from a woman’s last normal menstrual period. For full-term infants, gestational age is usually used to describe age in the womb. For preemies, we often use gestational age as a measurement of how close they are to being developmentally equivalent to a 40-week full-term neonate.
Growth chart: Graph that illustrates the distribution of weight and height/length by age in a population of children. The distribution is usually described in terms of percentiles.
Hospice care: Palliative care provided when death is imminent.
Isolette: An incubator brand, often used to mean generic incubator.
Jaundice: Yellow skin and eyes caused by extra bilirubin in the blood. Bilirubin is a blood component left after normal breakdown of red blood cells, which are constantly replaced. Common in newborns.
Kangaroo care: Holding an infant skin-to-skin against an adult. The parent or medical provider’s body heat helps regulate the infant’s body temperature, needed since many preemies have inadequate body fat to regulate their own temperature.
Meconium: The product of a neonate‘s first bowel movements, a tarry green substance made up of things the infant has ingested inside the mother’s womb.
Micropreemie: A baby delivered especially early. NICU staff usually reserve the term for babies who weigh less that 1.75 lbs and birth or is born before 26 weeks gestation (14 weeks premature). Colloquially, people use the term to describe babies born at less than 3 lbs or before 29 weeks gestation.
Milestone: Set of functional skills or tasks, including language, cognitive, and motor skills/tasks that most children can do at a certain age.
Neonatologist: Pediatrician specializing in treating newborns, especially following complex or high-risk births or early medical challenges.
Newborn: See neonate.
NG/nasogastric tube: Tube that carries food and medicine to the stomach through the nose as in gavage feeding.
Oscillating vent: A ventilator specifically designed for delicate preemie lungs to minimize damage by keeping the lungs somewhat inflated.
PDA/patent ductus arterioles: Abnormal blood flow after birth between two of the major arteries connected to the heart. This blood flow is normal and necessary in utero, but usually stops shortly after birth.
Preemie: A child born prematurely.
Prematurity: A child born before 37 weeks gestation.
Primary nurse: The nurse responsible for providing continuity in the care of a patient. The NICU parent’s best friend.
Pulse ox/pulse oximeter/oximeter: Machine that measures the oxygen saturation of a person’s blood without requiring a blood sample.
Radiant warmer: See open warmer.
Reflux/Gastroesophageal Reflux/GER: A condition in which stomach contents flow back up into the esophagus. The liquid spit up is mostly made of saliva and stomach acids. Reflux is not uncommon in kids under 2 years old.
Respirator: Non-medical term for ventilator.
Retinopathy of prematurity/ROP: Eye disease common to NICU babies, especially those who require extra oxygen, in which the blood vessels of the eye grow in a disorganized way. Mild cases usually resolve themselves, but severe cases can result in permanent blindness.
Sats/oxygen saturation/SpO2: The percentage of potential oxygen-carrying molecules (hemoglobin) in the blood that are carrying oxygen. Normal saturation is 95-100%. This is a good measure of whether an infant is getting enough oxygen.
Suck swallow breathe: Coordination of actions required for a neonate to take nourishment from the breast or bottle. This reflex usually kicks in by 36 weeks gestational age.
TTTS/TTS/twin-to-twin transfusion syndrome: A condition that occurs only in (some) identical multiples in the womb who share a placenta. An uneven distribution of blood vessels in the placenta can, in extreme cases, result in IUGR of one twin.
Ventilator: Machine that moves air in and out of the lungs to help infants who are having trouble breathing.
Vitals/vital signs: Measurements that indicate physical/medical wellbeing. These can include temperature, pulse, blood pressure, pulse ox, and breathing rate.
We hope that you never have to encounter NICU terminology and can be content with “swaddle,” “fontanel” and “milestone,” but if you do, please come by to tell us your story or seek our support. We’ve been there. Our littles ones are now doing well. You are not alone.