Entering the world of parenthood is a journey filled with anticipation, joy, and unexpected twists. However, for some parents, the journey begins with a detour into the Neonatal Intensive Care Unit (NICU). It's a place where emotions run high, where hope and fear intermingle, and where the tiniest fighters showcase unimaginable strength.
The NICU, short for Neonatal Intensive Care Unit, is a specialized medical facility designed to provide intensive care for newborns who are born prematurely or with medical complications. It's a world within a world, where dedicated healthcare professionals work tirelessly to give these fragile babies the best possible start in life.
For parents, stepping into the NICU can be overwhelming. The beeping monitors, the sight of tiny babies hooked up to wires and tubes, and the uncertainty of what lies ahead can leave them feeling helpless and anxious. But amidst the chaos, there is also hope – hope in the form of skilled medical teams, cutting-edge technology, and the resilience of the human spirit.
One of the greatest challenges for parents of NICU babies is navigating the rollercoaster of emotions that comes with the territory. There are moments of triumph, like when a baby reaches a milestone or shows signs of improvement. And then there are moments of despair, like when setbacks occur or when the road ahead seems dauntingly long.
But through it all, parents find strength in the bonds they form with their fellow NICU families. They share stories, offer support, and lean on each other for guidance and encouragement. In the NICU, strangers become allies, united by a common goal: to see their babies thrive.
While the journey through the NICU is undoubtedly challenging, it's also a journey filled with moments of profound beauty and resilience. It's a testament to the power of love, hope, and the human spirit – and a reminder that even the tiniest of fighters can overcome the greatest of odds.
NICU LANGUAGE
With your baby being admitted to the NICU you will learn a whole new language. Use this glossary to help you understand and even speak this foreign language with as little effort as possible. Terminology and people included are according to the South African context.
GLOSSARY OF NICU TERMS
The people and terminology for them:
- ICU: Intensive Care Unit
- NICU (Neonatal Intensive Care Unit): This specialized unit is where premature babies or very sick babies are monitored and cared for. It can also be referred to as Special Care Nursery (SCN) or Intensive Care Nursery (ICN).
- Neonate: This is how an infant is described for the first thirty days of their life.
- Premature infants: This is a baby born before 37 weeks gestation. These babies are often referred to as ‘premmies’.
| Prematurity can be further defined according to the baby’s birth weight: |
| Low birth weight baby | < 2500 grams at birth |
| Very low birth weight baby | < 1500 grams at birth |
| Extremely low birth weight baby | < 1000 grams (micro premmie) |
PEOPLE
Many professionals work together to care for premmie babies. You may meet some or all of the following:
- Audiologist: person who specialises in hearing problems, tests for hearing loss and the treatment thereof.
- Cardiologist: doctor who specialises in heart problems.
- Case manager: person involved with medical aids. She will reassess your baby’s medical status daily and keep the medical aid informed. She will also contact you if there are any problems from the medical aid’s side. If you have queries on whether you have sufficient funds from your medical aid to cover the care of your baby while in NICU, this will be the person to speak to.
- Endocrinologist: doctor that specialises in gland and hormonal problems.
- Lactation consultant: health care provider who has advanced training and certification in breastfeeding management. In some NICUs the lactation consultant is available to help the nursing mother establish and maintain a breast milk supply until her baby is ready to breastfeed. The consultant then helps mothers with the actual skill of breastfeeding. If your NICU does not have a lactation consultant appointed to the unit, the neonatal nurses might help you in this regard, but you might find it useful to contact a lactation consultant once you go home and need additional support.
- Neonatal nurse: registered nurse who is specially trained (referred to as a trained neonatal sister) or experienced (referred to as an experienced neonatal sister) to provide nursing care to high-risk, premature and ill newborns. She performs and coordinates the many tasks necessary to care of your baby. She will also look after the family and show you how to take care of your baby.
- Neonatologist: specialised paediatrician in high-risk, premature babies. She will supervise the medical care of your baby.
- Nephrologist: specialised doctor in kidney (urine) problems.
- Neurologist: specialised doctor in brain and nervous system problems.
- Occupational therapist: specially qualified person in the promotion of development and treating of developmental problems. You may encounter this person either in the NICU or in a follow-up clinic visit.
- Opthamologist: specialised doctor who will check your baby’s eyes and provide appropriate treatment.
- Paediatrician: specialised doctor in child health care. You will probably take your baby to your own paediatrician after discharge from the NICU.
- Pathologist: specialised doctor in blood problems. This doctor will analyse your baby’s blood results and send a report with the results to the NICU.
- Physiotherapist: specially qualified person in assessing movement and muscle problems in babies. They are sometimes also involved in the treatment of respiratory problems. You may meet one in the nursery or later in a follow-up clinic.
- Radiographer: person who will take X-rays of your baby’s lungs and abdomen. These X-rays may be repeated a few times a day when your baby is still very ill or when necessary when your baby is getting stronger.
- Radiologist: specialised doctor who evaluates and writes a report on the X-rays.
- Shift leader: neonatal nurse who is second in charge when the unit manager is on duty. She is responsible for the management of the NICU when the unit manager is unavailable.
- Social worker: qualified person who can help you with non-medical issues. She can assist you by providing counselling, emotional support, information on community resources and where the need arises, financial information.
- Speech and language specialist: qualified person trained in speech and language development and problems. If this person is also a qualified feeding therapist, she will play an important role in assisting your baby with feeding problems, such as sucking and swallowing difficulties.
- Unit manager: neonatal nursing sister who is in charge of the NICU. She supervises all nurses and clerks in the NICU. You are welcome to contact her with any queries or problems you might experience that cannot be solved by speaking with other nursing staff.
- Ward secretary: receptionist in the NICU. She will often be the one answering the phone in the unit and can help you with all kinds of administrative information and activities.
SPECIAL TESTS
- Ultrasound: a standard test that takes an ultrasound image of any of your baby’s organs by means of sound waves producing images. Ultrasound scans are simple, painless procedures and contain no radiation. Head sonar scans can be used to check for areas of bleeding from weakened or broken blood vessels in the brain. An ultrasound of the heart can be used to examine the heart to detect any abnormalities or expected conditions for premature babies, such as a patent ductus arteriosus (PDA), which is a little hole in the heart that did not close soon enough after birth. Ultrasounds can also be performed on your baby’s kidneys and stomach.
- X-ray: the most common type of imaging scan. It can show the condition of the lungs and other organs and check the position of any tubes or catheters inserted in your baby’s body. For some conditions, your baby may have several X-rays a day. This may be worrying, but there is no need to be concerned, since an X-ray is a painless procedure and experts agree that the amount of radiation used is too low to cause harm to your baby, now or in the future.
- Echocardiogram: an ultrasound of the heart that shows the blood flow and heart chambers and vessels to determine any heart problems.
LABORATORY TESTS
- Blood gases: to check levels of oxygen, carbon dioxide, and acids in the blood.
- Blood cultures: to tell if your baby has an infection.
- Chemical (electrolyte) balance: to determine levels such as salt and bicarbonates.
- Blood glucose levels: to determine blood sugar levels.
- Bilirubin level: to check for jaundice.
- Full blood count (FBC): to measure the level of different cells in your baby’s blood.
- Hematocrit: to check for anaemia, which is an abnormal low number of oxygen-carrying red blood cells in the blood.
MEDICAL TERMS
- Alveoli: These are tiny sacs in the lungs that exchange oxygen and carbon dioxide with the bloodstream.
- Antibodies: These are proteins that help to fight harmful viruses or bacteria.
- Aorta: This is the main artery leading from the heart. Oxygen-rich blood is supplied to the rest of the body this way.
- B.I.D.: An abbreviation derived from a Latin term, meaning twice daily.
- Bilirubin (Bili): This yellow substance occurs when red blood cells break down. Your baby’s skin may take on a yellowish tint because of excess bilirubin. In large quantities, bilirubin may cause a certain form of brain damage.
- Blood pressure (BP): The top number of your baby’s blood pressure is called the systolic pressure. This indicates the pressure that is exerted when your baby’s heart contracts and sends blood to your baby’s body. The lower number, the diastolic pressure indicates the pressure that is exerted between heartbeats. see Low Blood Pressure
- Breast Milk (B/M): Self Explanatory
- Breastfed or Breastfeeding (BF): Self Explanatory
- Bronchial tubes: These are the larger tubes that go from your baby’s trachea to their lungs.
- Bronchioles: These smaller tubes branch off from your baby’s bronchial tubes.
- Capillaries: These very small blood vessels remove waste and provide oxygen and nutrients to the body.
- CNS: Central Nervous System (brain and spinal cord) or Clinical Nurse Specialist
- Cerebrospinal fluid (CSF): This liquid is produced by the ventricles of the brain and circulates around the spinal column and brain of your baby.
- Corrected age: The actual age your premature baby would be, if he was born on his due date. If he is five months old, but was two months premature, his corrected age would be 3 months.
- Ductus arteriosus: This blood vessel joins the aorta with the pulmonary artery. In many premature babies, this vessel is not closed and must be closed by either drugs or surgery. The closing of this vessel enables proper blood and oxygen flow to the lungs.
- Edema: Fluid retained by the body that causes swelling and puffiness.
- Fontanel: The soft spot on your baby’s head, indicating the unjoined sections of the skull.
- Gestational Age (GA): Gestation is the period of time between conception and birth during which the fetus grows and develops inside the mother’s womb. Gestational age is the time measured from the first day of the woman’s last menstrual cycle to the current date.
- Hemoglobin: This material in red blood cells actually carries the oxygen. It also contains iron.
- Lecithin: This is one of the ingredients used in the making of surfactant.
- Metric measures of liquid (cc or ml): 30cc (or ml) is 1 ounce; 5 cc is ~1 teaspoon
- Metric weight (Gms or Grams): 450 grams = 1 pound; 1 kilogram (Kg) = 1000 grams
- Nothing by Mouth (NPO): Nil per os (NPO) is Latin for a medical instruction meaning to withhold oral food and fluids from a patient for various reasons.
- Oxygen(O2): Self Explanatory
- Surfactant: This soapy-like substance keeps air sacs in the lungs from collapsing and sticking together. Very premature babies are unable to make this substance in their lungs and are given a synthetic surfactant.
- Tachycardia: This means a very fast heart rate.
- Tachypnea: This means a very fast breathing rate.
MEDICAL PROCEDURES
- Arterial blood gas: This sample of blood is taken from an artery. It is used to measure the oxygen, carbon dioxide and acid levels in the blood.
- Bagging: This temporary procedure helps your baby breathe. A small bag is squeezed and oxygen or air flows through the mask on your baby’s face.
- Blood gas: This measures oxygen, carbon dioxide and acid content in a small blood sample taken from one of your baby’s arteries.
- Cardiopulmonary Resuscitation (CPR): This is a manual way for restarting breathing and a heartbeat, or for maintaining breathing and a heartbeat.
- Complete blood count (CBC): This test counts number and types of blood cells and can be used to check for infection in your baby.
- Computerized Axial Tomography (CAT or CT): This x-ray machine can capture cross sectional images of your baby’s tissues.
- Continuous Positive Airways Pressure (CPAP): This means continuous positive low airway pressure. Your baby’s lungs are helped to stay expanded with the introduction of pressurized air. This helps her lungs while inhaling and exhaling. Sometimes your baby is given extra oxygen this way as well.
- Echocardiogram: Ultrasound waves produce a picture of your baby’s heart, in this non-invasive procedure.
- Electrocardiogram (ECG / EKG): This tracks electrical impulses in the heart.
- Extubation: This procedure means the removing of your baby’s endotracheal tube.
- Intravenous (by vein) (IV): Intravenous means “within a vein.” It usually refers to giving medications or fluids (solutions) through a needle or tube inserted into a vein, which allows immediate access to the blood supply.
- Lumbar puncture (LP): This procedure extracts spinal fluid for testing. A needle is carefully inserted in the lower back and between vertebrae.
- Nasal Continuous Positive Airway Pressure (Nasal CPAP): This stands for Continuous Positive Airway Pressure. Your baby is helped to breathe by small amounts of air and oxygen. It also maintains a small amount of continuous pressure to your baby’s lungs.
- Phototherapy: The use of bililights to treat hyperbilirubinemia.
- Spinal tap: The same as a lumbar puncture, this procedure extracts spinal fluid for testing. A needle is inserted in the lower back and between the vertebrae.
- Total Parenteral Nutrition (TPN): nourishment provided intravenously
MEDICAL CONDITIONS
- Apnea: Where there is no breathing for longer than 20 seconds.
- Atrial Septal Defect (ASD): a hole in the wall between the two upper chambers of the heart
- Bradycardia: This means your baby’s heart rate is below 100 beats per minute.
- Brain bleed: This indicates hemorrhaging into some part of your baby’s brain.
- Bronchiolitis: This means the bronchioles are inflamed or infected.
- Bronchitis: This means the bronchial tubes are inflamed or infected. A condition marked by respirator-induced lung and bronchiole damage.
- Bronchopulmonary Dysplasia (BPD): This condition may persist for years if your baby has underdeveloped lungs. The pressure from a ventilator may cause scarring or damage to your baby’s delicate lungs. In some cases, if your baby is very premature, they may require extended ventilator support. Some babies do go home on oxygen. The condition is also called Chronic lung disease or CLD.
- Cerebral palsy (CP): Cerebral Palsy, disorder of the nervous system characterized by abnormal muscle tone and movement. This can occur from brain damage.
- Chronic lung disease (CLD): See BPD, Bronchopulmonary dysplasia.
- Dyspnea: This term is used to describe difficulty breathing.
- Extremely Low Birth Weight (ELBW): Birth weight of under 800 g
- Gastroesophageal Reflux Disease (GERD): This is a condition in which food or liquid travels backwards from the stomach to the esophagus (the tube from the mouth to the stomach). This action can irritate the esophagus, causing heartburn and other symptoms.
- Haemolysis, Elevated Liver enzymes, Low Platelets (HELLP): HELLP syndrome is a group of symptoms that occur in pregnant women who have hemolysis, elevated liver enzymes and low platelet count.
- Hernia: Your premature baby may have a hernia. They are not unusual in premmies. Umbilical hernias can appear at the naval. Inguinal hernias can appear in the groin area. Both are caused by a part of the intestine coming through a small opening in the abdominal wall.
- Hyaline membrane disease (HMD): A lack of surfactant in the lungs causes this form of respiratory distress (another name for Respiratory Distress Syndrome).
- Hydrocephalus: A condition where cerebrospinal fluid has leaked into the brain.
- Hyperbilirubinemia: This means there is too much bilirubin in the blood.
- Hypercalcemia: This means there is too much calcium in the blood.
- Hypercapnia: This means there is a higher amount of carbon dioxide in the blood than what is considered normal.
- Hyperglycemia: This means there is a higher amount of sugar in the blood than what is considered normal.
- Hyperkalemia: This means there is too much potassium in the blood.
- Hypertension: This means high blood pressure.
- Hyperthermia: This means a body temperature that is very high.
- Hyperventiliation: This means very rapid breathing.
- Hypocalcemia: This means there is too little calcium in the blood.
- Hypoglycemia: This means there is too little sugar in the blood.
- Hypokalemia: This means that potassium levels are too low in the blood.
- Hyponatremia: Sodium levels in the blood that are too low.
- Hypotension: This means low blood pressure.
- Hypothermia: This means a body temperature that is very low.
- Hypoxia: This means lack of oxygen.
- Indomethiacin: This drug is sometimes used to close the patent ductus arteriosus.
- Intracranial hemorrhage (ICH): This means bleeding that occurs in the brain.
- Intrauterine Growth Retardation/restriction (IUGR): Result is of this condition is that the baby is small for its gestational age
- Intraventricular haemorrhage (IVH): This means bleeding into the ventricles of the brain.
- Jaundice: A condition caused by an excess of bilirubin in the blood. It can cause your baby to have a yellow tint.
- Low Birth Weight (LBW): Under 2500 gr (5lb 8 oz) at birth regardless of GA.
- Meningitis: This swelling affects the membranes found around the spinal cord and brain.
- Patent ductus arteriosus (PDA): This describes a condition where the fetal blood vessel linking the aorta and the pulmonary artery does not close properly after birth. This is not an uncommon condition in premature infants.
- Periventricular leukomalacia (PVL): A condition where areas of the brain are affected by lack of oxygen and/or blood supply which causes damage to brain tissue
- Premature Rupture of membranes or Pre-labour Rupture of Membranes (PROM): Rupturing of membranes prior to the onset of labour
- Pulmonary hypertension: This means that the blood vessels in the lungs are unable to relax and open.
- Respiratory distress syndrome (RDS): Respiratory difficulty due to immaturity of lung tissues and deficiency of surfactant in the air spaces
- Respiratory Syncytial Virus (RSV): A virus causing infections of the upper and lower respiratory tract in premmies.
- Retinopathy of prematurity (ROP): This is seen in many premature infants. There is abnormal growth in the tiny blood vessels in the eye. The vessels have not fully developed when a baby is born prematurely.
- Small for Gestational Age (SGA): This means a fetus or infant is smaller in size than normal for the baby’s gender and gestational age.
- Sudden Infant Death Syndrome (SIDS): This is the unexpected, sudden death of a child under age 1 in which an autopsy does not show an explainable cause of death.
- Urinary Tract (kidney or bladder) Infection (UTI): This is a bacterial infection of the urinary tract.
- Ventricular Septal Defect (VSD): A hole in the wall between the two lower chambers of the heart
- Very Low Birth Weight (VLBW): Birth weight under 1500 g
MEDICATION
- Dexamethasone: This steroid is sometimes used in the treatment of chronic lung disease.
- Diptheria, Pertussis and Tetanus. (DPT): The immunization your baby will receive against Diptheria, Pertussis and Tetanus.
- Caffeine: Medication that stimulates breathing.
This page is brought to you with the courtesy of Prematurity – Adjusting your Dream.
