Coburn Kids

I think as parents, Daniel and I sometimes forget how foreign a lot of the words that we throw around with having a baby in the NICU can seem.  So here’s a glossary of some of the most frequent terms you’ll hear from us and see on the site to help understand what’s going on in our kid’s care. I’ve also added some notes to explain how Caden is affected by them.

GLOSSARY 

Adjusted Age
Also known as “corrected age.” This is your child’s chronological age minus the number of weeks he or she was born early. For example, if your 9-month-old was born 2 months early, you can expect him or her to look and act like a 7-month old. Usually you can stop age-adjusting by the age of 2 or 3.

Aminophylline
A medication used to stimulate an infant’s central nervous system. It is prescribed to reduce the incidence of apneic episodes. This is the intravenous form; the oral form is known as Theophylline.

Anemia
A condition in which the hemoglobin or hematocrit levels in the blood are lower than normal.

Apgar Score
A numerical summary of a newborn’s condition at birth based on five different scores, measured at 1 minute and 5 minutes. (Additional measurements are made every five minutes thereafter if the score is less than 7 at five minutes, until the score reaches 7 or greater.) Premature infants generally have lower scores than full-term infants, but the Apgar score does not accurately predict future development. Caden’s Apgar scores were 1 at 1 min., 3 at 5 min., and 7 at 10 min.

Apnea
Cessation of breathing lasting 20 seconds or longer. Also known as an apneic episodes or apneic spells. It is common for premature infants to stop breathing for a few seconds. They almost always restart on their own, but occasionally they need stimulation or drug therapy to maintain regular breathing. The heart rate often slows with apnea; this is called bradycardia. The combination of apnea and bradycardia is often called an A&B spell.

Apnea gradually becomes less frequent as premature infants mature and grow. There is no relationship between apnea and sudden infant death syndrome (SIDS).

Bethamethasone
A steroid medication given to the mother before birth to help the baby’s lungs mature more quickly. It is most effective if it is given more than 24 hours before delivery. Betamethasone also helps intestines, kidneys and other systems to mature.

Bilirubin
Yellow chemical that is a normal waste product from the breakdown of hemoglobin and other similar body components. The placenta clears bilirubin from the fetus’s blood, but after delivery this task belongs to the infant. It usually takes a week or more for the newborn’s liver to adjust to its new workload. When bilirubin accumulates, it makes the skin and eyes look yellow, a condition called jaundice.

Blood Gas
A blood test used to evaluate an infant’s level of oxygen, carbon dioxide and acid. This test is significant because it helps to evaluate an infant’s respiratory status.

Blood Transfusion
The procedure of transfering whole blood or blood products from a screened donor to another individual into the bloodstream. Caden has had 5 blood transfusions so far.

Bradycardia (”Brady”)
An abnormally low heart rate. Bradys are usually associated with apnea in premature infants. During these spells the infant will stop breathing for at least 15 seconds and the heart rate will start to slow, also referred to as an “A&B spell.” Gentle touching or other stimulation almost always restarts the breathing and increases the heart rate. Medications (theophylline or caffeine) are often used to treat these spells in newborn babies.

Bronchopulmonary Dysplasia (BPD)
A chronic lung disease of babies, when the lungs do not work properly and the babies have trouble breathing. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 36 weeks gestational age. Also referred to as Chronic Lung Disease (CLD), it is most common in babies who are born before 34 weeks gestation. Doctors think babies get BPD because their lungs are sensitive to something damaging in the environment, such as oxygen, a breathing machine, or an infection. 

Case Manager
A patient advocate who coordinates health services and home care with the insurance company during hospitalization.

CC’s
Cubic centimeters. 30 cc’s = 1 fluid ounce.

Central Venous Line
The central venous line (CVL), also called the central venous catheter (CVD), is a type of intravenous tube used to give fluids and medications. The catheter is placed in a major vein of the body during surgery or by insertion through a vein in the arm, leg or head.

Charge Nurse
The registered nurse who has general responsibility for coordinating the nursing care of all babies in a unit for a particular shift. Nursing shifts may be either 8 or 12 hours.

Cleft Lip

A cleft lip is a separation of the two sides of the lip. The separation often includes the bones of the upper jaw and/or upper gum. 

Cleft Palate

An opening in the roof of the mouth in which the two sides of the palate did not fuse, or join together, as the unborn baby was developing. Cleft lip and cleft palate can occur on one side (unilateral cleft lip and/or palate), or on both sides (bilateral cleft lip and/or palate). Because the lip and the palate develop separately, it is possible for the child to have a cleft lip, a cleft palate, or both cleft lip and cleft palate.

Caden has a bilateral cleft lip and palate.

Cleft Team

Plastic/Reconstructive Surgeon
Oral/Maxillofacial Surgeon
Otolaryngologist (Ear, Nose, Throat)
Audiologist
Pediatrician
Pediatric Dentist
Orthodontist
Prosthodontist
Speech Pathologist/Audiologist
Psychologist
Social Worker

Continuous Positive Airway Pressure (CPAP)
Supplemental oxygen or room air delivered under pressure though either an endotracheal tube (tube that goes directly into the infant’s lungs) or small tubes or prongs that sit in the nostrils. Delivering oxygen under pressure helps keep air sacs in the lungs open and also helps maintain a clear airway to the lungs. Nasal CPAP (NCPAP) is commonly used immediately after removing the endotracheal tube to treat apnea and/or prevent the need for an endotracheal tube and ventilator.

We are not currently certain if Caden can have a CPAP because of his bilateral cleft lip and palate.

Crit
Slang for hematocrit, this is a test used to determine the percentage of red blood cells compared to total blood volume. It is commonly used to test for anemia. It is significant in that is helps show a baby’s ability to supply oxygen to his or her organs and tissues.

Developmentally Delayed / Disabled
A term used to describe infants and toddlers who have not achieved skills and abilities which are expected to be mastered by children of the same age. Delays can be in any of the following areas: physical, social, emotional, intellectual, speech and language and/or adaptive development, sometimes called self-help skills, which include dressing, toileting, and feeding. Many developmental delays can be overcome with early intervention programs.

Developmental Milestones
Major and minor social, emotional, physical, and cognitive skills acquired by children as they grow up.

Early Intervention Program/ECI/Early Childhood Intervention
Planned use of physical therapy and other interventions in the first few years of a child’s life to enhance the child’s development. Utah’s Birth To Three program is an early intervention program.

Echocardiogram (”Echo”)
Ultrasound picture of the heart. This is a painless, non-invasive procedure that takes accurate pictures of almost all parts of the heart. Many preemies have a cardiac ultrasound if the doctor is looking for evidence of a patent ductus arteriosus.

Endotracheal Tube (ETT or ET Tube)
Tube placed through the mouth or nose into the throat and the child’s trachea (windpipe). This tube provides a secure pathway through which air can be circulated to the lungs.

Gastroesophageal Reflex (GER)
Contents on the stomach coming back up into the esophagus, which occurs when the junction between the esophagus and the stomach is not completely developed or is abnormal. GER is very common among preemies. In some babies, reflux can irritate the lining of the esophagus and cause a form of “heartburn” which causes them to become irritable and uncomfortable. Mild forms of GER are common, require no treatment, and go away on their own over a period of months. However, it is necessary to evaluate how severe the GER is and whether or not it requires treatment.

Treatment of GER may include keeping the baby upright, thickening of the feedings, giving medication to reduce stomach acid, and sometimes giving medication to increase the ability of the stomach to contract.

Gavage Feeding
Feeding a baby through a nasogastric (NG) tube. Also called tube feeding.

Heart Murmur
A noise heard between beats of the heart. Innocent, functional heart murmurs are common and often heard in infants and toddlers.

Hyaline Membrane Disease (HMD)
Another name for respiratory distress syndrome (RDS).

Hyperbilirubinemia
Another name for jaundice.

Incubator
Another name for an isolette.

Intrauterine Growth Retardation (IUGR)
A condition in which the fetus doesn’t grow as big as it should while in the uterus. These babies are small for their gestational age, and their birth weight is below the 10th percentile. IUGR can be caused by decreased blood flow to the placenta, maternal hypertension, drug use, smoking, poor weight gain, dieting during pregnancy, pre-eclampsia, alcoholism, multiple fetuses, abnormalities of the cord or placenta, prolonged pregnancy, chromosomal abnormalities, or a small placenta.

Caden was small for his gestational age and we believe he did not grow the last 2 weeks that he was in my uterus. Caden is ‘barely’ on the growth charts for his age and weight.

Intravenous (IV)
A catheter (small tube) placed directly through the skin into the vein in a baby’s hand, arm, foot, leg or scalp. Nutrients, fluids and medications can flow through this tube. Using an IV is a common route for delivering fluids to newborns and other patients. Babies’ veins are very fragile, so the location of the IV may need to be changed frequently.

Intraventricular Hemorrhage (IVH)
Bleeding into the ventricles (fluid-filled spaces) within the brain. All of us have two small, fluid filled ventricles in the center of our brains. These ventricles manufacture cerebrospinal fluid. The fluid-filled space within those ventricles are called the intraventricular space. The areas just outside of those ventricles are the periventricular areas. Adjacent to the outer wall of the ventricle is the germinal matrix, an area of immature nerve cells and tender blood vessels. As the preterm baby matures, the germinal matrix tissues migrate out into the substance of the brain, and the germinal matrix gradually disappears.

The tender blood vessels within the germinal matrix can rupture and bleed; this is called a germinal matrix hemorrhage or grade I intraventricular hemorrhage (IVH). The bleeding, if severe, can lead to bleeding within the ventricle itself, a grade II IVH. A grade II bleed is what Caden has. If there is a lot of bleeding, the ventricles can become enlarged and swollen by the blood, which is a grade III IVH. If the bleeding either involves or secondarily injures the periventricular brain tissue, it is a grade IV IVH or IVH with extension of the hemorrhage outside of the ventricular system into the brain substance.

Isolette
Also known as an incubator, an isolette is a clear plastic, enclosed bassinet used to keep prematurely born infants warm. Preemies often loose heat very quickly unless they are put in a protected thermal environment. The temperature of the isolette can be adjusted to keep the infant warm regardless of the infant’s size or room temperature.

Jaundice
Also known as Hyperbilirubinemia. Jaundice comes from the accumulation of a natural waste product, bilirubin. As red blood cells and other tissues are replaced in the body, the waste products of their breakdown are normally eliminated by the liver. Bilirubin has a yellow color, and when the levels are high it stains the skin and other tissues.

A little jaundice can be expected in all newborns. If the jaundice is higher than usual, it can usually be treated with phototherapy (special lights). Phototherapy is so effective in helping the liver excrete bilirubin that elevated levels are rarely a problem. Prematurely born infants may have elevated bilirubin levels for several weeks.

Kangaroo Care
Skin-to-skin contact between parent and baby. During kangaroo care, the baby is placed on the parent’s chest, dressed only in a diaper and sometimes a hat. The baby’s head is turned to the side so the baby can hear the parent’s heartbeat and feel the parent’s warmth. Kangaroo care is effective, but it’s limited to babies whose condition is not critical.

Lanugo
The fine, downy hair that often covers the shoulders, back, forehead, and cheeks of a prematurely born newborn. Lanugo is replaced by more normal appearing hair toward the end of gestation.

Lead Wires
Wires connecting the sensors on the baby’s chest to the vital signs monitor.

Low Birth Weight
Any baby with a birth weight under 2,500 grams (about 5 pounds) is a low birth weight baby (LBW). Caden is classified as an Extremely Low Birth Weight at 760 grams or 1 lb. 11 oz.

Monitor
Machine that displays and often records the heart rate, respiratory rate, blood pressure and blood oxygen saturation of the baby. An alarm may sound if one or a number of these vital signs are abnormal. For example, in a normal infant the heart rate is usually between 120 and 180 beats per minute and oxygen saturation should be above 90%. False alarms are common, as abrupt movements can cause the monitor to register inaccurate readings — a good general rule of thumb is “Look at the baby, not the monitor.”

Nasal Cannula
Light, flexible tube used to give supplemental oxygen to a child. Oxygen flows through two prongs extending into the nostrils.

Nasogastric Tube (NG Tube)
Narrow, flexible tube inserted through the nostril, down the esophagus, and into the stomach. It is used to give food or to remove air or fluid from the stomach.

Necrotizing Enterocolitis (NEC)
Swelling, tenderness and redness of the intestine caused by an infection or decreased blood supply to the intestine. The seriousness of NEC varies: it may injure or destroy parts of the bowel, or it may affect only the innermost lining or the entire thickness of the bowel.

Neonatal Intensive Care Unit (NICU)
A special care nursery for preemies and newborn infants with severe medical complications. They are cared for by neonatologists and nurses with specialty training.

There are 3 levels of NICUS:

Level 3: Highest level of care for critically ill infants that may have or could severe life threatening conditions. This is what Caden is in currently.

Level 2: Any newborn that may require monitoring after birth and requires more than routine newborn care.

Level 1: Routine newborn care. Usually for full-term infants, there may not be specialized equipment or physicians for problems.

Neonatologist
A pediatrician who has received 10+ years of training after medical school in preparation for treating premature or sick newborns. This is the person who usually directs your baby’s care if hospitalization in an NICU is required.

Oscillator
High-frequency ventilator that uses breath rates in the order of 600 breath cycles per minute.  At the same time, the pressure with which these very frequent breath rates is delivered is less than that of the conventional ventilators. The advantage that this has is in perhaps reducing the possible long-term damage to lung tissue. This is thought to be due in part to the high pressures needed to inflate these lungs.

Oximeter
Machine monitoring the amount of oxygen in the blood. A tape-like cuff is wrapped around the baby’s toe, foot, hand or finger. This machine allows the NICU staff to monitor the amount of oxygen in the baby’s blood without having to obtain blood for laboratory testing.

Parenteral Nutrition (Hyperalimentation)
Solution put directly into the bloodstream, giving necessary nutrients, such as protein, carbohydrates, vitamins, minerals, salts, and fat. Other names for this are hyperal, total parenteral nutrition (TPN) and intravenous feedings.

Patent Ductus Arteriosus (PDA)
The ductus arteriosus is a blood vessel connecting the pulmonary artery and the aorta. Before birth, this vessel allows the baby’s blood to bypass the lungs because oxygen is supplied by the mother through the placenta. The ductus arteriosus should close soon after birth. If it does not, it is called a patent (open) ductus arteriosus, or PDA. A PDA may be treated either with medication or surgery. Caden’s PDA has closed.

PCMC/Primary Children’s Medical Center
Where Caden will be having his cleft surgies. Utah’s children’s hospital

Periodic Breathing
Irregular breathing pattern marked by pauses for as long as 10 to 20 seconds. This is common in both premature and full-term babies and does not usually mean there is a problem.

Persistent Pulmonary Hypertension of the Newborn/PPHN
In PPHN it is difficult for blood to get into the lungs and pick up more oxygen that can go to the rest of the body. The cause is usually unknown, and treatments are based on the individual situation. In Caden’s case, they are doing medication and monitoring him carefully. This seems to be resolved in him now though.

Phototherapy/Bili Lights
Light therapy to treat jaundice.

PICC Line
A special IV line used to provide fluids into a vein. In general, a PICC line is very stable and lasts longer than a typical IV. It is threaded through a vein up to the heart. Also known as PCVC.

Respiratory Distress Syndrome (RDS)
Respiratory problems due to lung immaturity. Respiratory distress is a much more inclusive term meaning simply that the child is having problems breathing. Respiratory distress syndrome is a specific condition that causes respiratory distress in newborn babies due to the absence of surfactant in the lungs. Without surfactant, the alveoli (air sacs) collapse when the baby breathes out. These collapsed air sacs can only be reopened with increased work at breathing. Most newborn babies do not have a normal amount of surfactant in their air sacs until 34 to 36 weeks’ gestation. However, some very premature infants (27 to 30 weeks’ gestation) will have adequate surfactant production and function and some full-term infants (37 to 40 weeks’ gestation) will not.

Respiratory Syncytial Virus (RSV)
The most common cause of bronchiolitis in young children. Bronchiolitis is an infection of the bronchial tubes that causes rapid breathing, coughing, wheezing and sometimes, even respiratory failure, especially in the first two years of life. RSV infection and bronchiolitis is a particular risk for infants with chronic lung problems and those born prematurely.

The RSV season is usually from October to March.

Retinopathy of Prematurity (ROP)
Scars and abnormal growth of the blood vessels in the retina, the layer of cells in the back of the eye. The retina does not mature until close to term (40 weeks gestation), so when babies are born very prematurely, the normal growth of blood vessels into the retina is altered. These abnormally growing vessels can eventually lead to disruption of the retina and the loss of eye function.

Fortunately, severe ROP is unusual and mostly found in extremely premature infants. Routine exams for ROP will be given to premature infants at risk starting at about the 5th or 6th week after birth. If severe ROP develops, there are treatments that can reduce or prevent the loss of vision. For more information and a detailed explanation of ROP, you can visit the site of The Association for Retinopathy of Prematurity and Related Diseases (ROPARD).

We expect Caden to have some degree of ROP.

Room Air
The air we normally breathe, which contains 21% oxygen. When supplemental oxygen is given for respiratory problems, it is in concentrations higher than 21%.

Rooting Reflex
An instinctive reflex in newborn infants that causes them to turn their head to the side when their cheek is stroked. This reflex helps infants learn how to eat. By gently stroking the cheek, your baby will turn his or her head toward you with an open mouth ready to feed.

Sats/Desats/High Sats
Term for blood oxygen saturation. Desats is when Caden’s blood oxygen saturation has dropped.  High sats when it’s up.

Step-down Unit
Babies can be transferred from the NICU to this unit to continue their recovery after they are no longer acutely ill.

Surfactant
Surfactant is a soapy material inside the lungs of adults and mature infants that helps the lung to function. Without surfactant, the air sacs tend to collapse on exhalation. Lung surfactant production is one of the last systems to mature in an infant, which can cause the breathing problems found in preemies.

Fortunately, surfactant obtained from cows has been shown to be safe and effective in treating respiratory distress due to surfactant deficiency. The use of surfactant to treat respiratory problems in preemies is one of the most important recent medical advances in pediatrics.

Caden has had 2 doses of surfactant.

Tachycardia
A faster than normal heart rate.

Tachypnea
A faster than normal respiratory rate.

Theophylline
A medication used to stimulate an infant’s central nervous system. It is prescribed to reduce the incidence of apneic episodes. Thi is the “oral” form that can be ingested by an infant through a nipple or feeding tube. The intravenous form is known as Aminophylline.

Ultrasound
Imaging of body parts using sound waves. The reflected sound waves are then analyzed by computer and turned into pictures.

Umbilical Arterial Catheter (UAC)
Catheter (small tube) placed in a belly button artery. It is used to check blood pressure, draw blood samples and give fluids.

Umbilical Venous Catheter (UVC)
Catheter (small tube) placed in the belly button vein. It is used to give the baby fluids and medications.

Ventilator (”Vent”)
A machine that assists adults or children to breathe. Lung immaturity in prematurely born infants is the most common reason for a newborn to require a ventilator.

Very Low Birth Weight (VLBW)
A birth weight of less than 1,500 grams (about 3.3 pounds). About 1.3% of all births result in babies with a very low birth weight. Caden again was 760 grams (1 lb. 11 oz.)

Vital Signs Monitor
A machine measuring and displaying heart rate, breathing rate, and blood pressure on a computer screen. If these vital signs become abnormal, an alarm usually sounds.

Warmer
Bed which allows maximum access to a sick baby. Radiant heaters above the bed keep the baby warm. Generally, a baby progresses from a warmer to an isolette to an open crib before leaving the NICU.