http://www.perfectlypreemie.com/catalog/
Friday, July 23, 2010
preemie clothes and mores
Here is a great site with clothes for the micropreemies! For the mom trying to get that perfect photo in the nicu, these are great!
http://www.perfectlypreemie.com/catalog/
http://www.perfectlypreemie.com/catalog/
Saturday, July 17, 2010
Thursday, July 15, 2010
My Gavin - scrap blog
I am addicted to the site scrap blog. I used it to create a scrapbook of my son Gavin's NICU journey. I wrote in a journal during his stay in the NICU and used my journal entries and his pictures to create it. Here it is:
what are they talking about? -helpful terms and definitions
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.
Anemia
A condition in which the red blood cells in the blood — measured by a hematocrit, or "crit" — are lower than normal. Red blood cells carry oxygen and carbon dioxide to and from tissue
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.
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).
ASPIRATION
Breathing a foreign material (such as formula, stomach fluids, meconium, etc.) into the lungs.
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.
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. For more information on BPD, visit the American Lung Association® site.
Cerebral Palsy (CP)
Cerebral palsy is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupts the brain's ability to adequately control movement and posture.
"Cerebral" refers to the brain and "palsy" to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e., it does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. CP is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not "curable" in the accepted sense, training and therapy can help improve function. For more information, visit the website for United Cerebral Palsy®.
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.
Desat - Desaturation
when the O2 concentration in the blood drops below a certain level, usually below 90%.
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.
Extracorporeal Membrane Oxygenation (ECMO)
This long name means "oxygenation outside the body." It's used for babies whose lungs are not working properly (i.e., transferring oxygen into the blood and removing carbon dioxide) despite other treatments. The ECMO takes over the work of the lungs so they can rest and heal. It's similar to the heart-lung bypass used during some types of surgeries.
To learn more about ECMO, the Monroe Carell Jr. Children's Hospital at Vanderbilt University has an excellent explanation on their website of ECMO in the NICU.
Extubation
Removing the Endotracheal Tube (ET Tube) from the baby's windpipe.
Hydrocephalus
Abnormal accumulation of cerebrospinal fluid within the ventricles of the brain. It is sometimes known as "water on the brain." Within the center of our brains each of us has two fluid-filled areas called cerebral ventricles. Cerebrospinal fluid is made within these ventricles and distributed over the surface of the brain and spinal cord. When the normal circulation of cerebrospinal fluid is interrupted, fluid can accumulate within the ventricles. This fluid puts pressure on the brain, forcing it against the skull and enlarging the ventricles. In infants, this fluid accumulation often results in bulging of the fontanelle (soft spot) and abnormally rapid head growth. The head enlarges because the bony plates making up the skull have not yet fused together. In preemies the most common cause of hydrocephalus is intraventricular hemorrhage.
Ileal Perforation
Puncture or hole in the last part of the small bowel (ileum). This usually occurs spontaneously in extremely premature babies. Its cause is unknown. Often an ileal perforation requires surgery to form an ileostomy and to repair the hole in the bowel. Some NICUs have reported success simply by putting a piece of drainage tubing into the abdomen to drain out the infection and let the perforation seal on its own.
Incubator
Another name for an isolette.
Intracranial Hemorrhage
Bleeding within the skull. Bleeding most often occurs within the ventricles of premature infants, but it can occur anywhere within or on the outside of the brain.
Intrauterine Growth Restriction (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.
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.
Meconium Aspiration Syndrome (MAS)
Respiratory disease caused when babies inhale meconium or meconium-stained amniotic fluid into their lungs; characterized by mild to severe respiratory distress.
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.
Nebulizer Treatment
A nebulizer humidifies air and/or oxygen that is passed to the infant. At home, a nebulizer is a way of delivering medication — it transforms medicine into droplet form for inhalation. Used for a variety of lung problems.
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.
Neonate
A term used to describe an infant during the first 30 days of life.
Neonatologist
A pediatrician who has received 4-6 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.
NPO
An abbreviation for a Latin term that means "nothing by mouth" — i.e., no food or water.
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.
Persistent Pulmonary Hypertension of the Newborn (PPHN)
High blood pressure in the lungs, which causes the small blood vessels in the lungs to become progressively narrower. It can lead to breathing problems and reduced levels of oxygen in the blood. Sometimes treated with nitric oxide, a gas naturally produced by the body that can help expand blood vessels.
PICC line or Central Cath
a thin, flexible tube (catheter) placed in a larger vein or artery to deliver medications or necessary fluids and nutrients to the body. Broviac catheters are usually placed in the upper chest and tunnel under the skin to enter the vena cava, the large blood vessel in the center of the body carrying blood to the heart. PICC lines (percutaneously inserted central catheters) are usually threaded through a vein in the arm to the vena cava. Central catheters also include umbilical venous and umbilical artery catheters which may be inserted into the vein or artery of the umbilical stump (belly button) shortly after birth.
Pneumothorax
When air from the baby's lungs leaks out into the space between the baby's lungs and chest wall. While small leaks may cause no problems and require no treatment, larger leaks may cause serious complications such as lung collapse and may need to be repaired with surgery.
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. For more information, read the RDS Fact Sheet provided by the American Lung Association®.
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. For more information, visit the MedImmune website.
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).
Retraction
An abnormal sucking in of the chest during breathing, indicating that the baby is working too hard to breathe.
Seizure
A "short-circuiting" of electrical impulses in the brain, resulting from a variety of causes. Seizures can generally be classified as either "simple" (no change in level of consciousness) or "complex" (when there is a change in consciousness). Seizures may also be classified as "generalized" (the baby's whole body is affected) or "focal" (only one part or side of the body is affected).
Sepsis
A potentially dangerous infection of the bloodstream which occurs when the body's normal reaction to inflammation or a bacterial infection goes into overdrive. Certain lab tests, cultures, and x-rays can help diagnose this condition, which is treated with antibiotics. Also known as Systemic Inflammatory Response Syndrome (SIRS).
Septicaemia is sepsis of the bloodstream caused by bacteremia, which is the presence of bacteria in the bloodstream, but this term is also sometimes used to refer to sepsis in general.
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.
Tachycardia
A faster than normal heart rate.
Tachypnea
A faster than normal respiratory rate.
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.
Ventriculoperitoneal Shunt
A plastic catheter (shunt) surgically placed in the ventricle of the brain to drain spinal fluid from the brain into the abdominal cavity. Used to treat hydrocephalus.
Of course these are not all the terms we hear and see, if you have anymore NICU terms we should add let me know and I will edit the post as an ongoing update so we can grow our glossary!
*These are definitions compiled from other resources. Here are the some of the sites:
http://www.ttmf.org/glossary_u-z.html
http://www.goodbeginnings-csmc.org/neonatal/resources/terms.htm
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.
Anemia
A condition in which the red blood cells in the blood — measured by a hematocrit, or "crit" — are lower than normal. Red blood cells carry oxygen and carbon dioxide to and from tissue
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.
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).
ASPIRATION
Breathing a foreign material (such as formula, stomach fluids, meconium, etc.) into the lungs.
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.
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. For more information on BPD, visit the American Lung Association® site.
- Central Venous Line (CVL)
- 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.
Cerebral Palsy (CP)
Cerebral palsy is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupts the brain's ability to adequately control movement and posture.
"Cerebral" refers to the brain and "palsy" to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e., it does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. CP is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not "curable" in the accepted sense, training and therapy can help improve function. For more information, visit the website for United Cerebral Palsy®.
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.
when the O2 concentration in the blood drops below a certain level, usually below 90%.
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.
Extracorporeal Membrane Oxygenation (ECMO)
This long name means "oxygenation outside the body." It's used for babies whose lungs are not working properly (i.e., transferring oxygen into the blood and removing carbon dioxide) despite other treatments. The ECMO takes over the work of the lungs so they can rest and heal. It's similar to the heart-lung bypass used during some types of surgeries.
To learn more about ECMO, the Monroe Carell Jr. Children's Hospital at Vanderbilt University has an excellent explanation on their website of ECMO in the NICU.
Extubation
Removing the Endotracheal Tube (ET Tube) from the baby's windpipe.
Hydrocephalus
Abnormal accumulation of cerebrospinal fluid within the ventricles of the brain. It is sometimes known as "water on the brain." Within the center of our brains each of us has two fluid-filled areas called cerebral ventricles. Cerebrospinal fluid is made within these ventricles and distributed over the surface of the brain and spinal cord. When the normal circulation of cerebrospinal fluid is interrupted, fluid can accumulate within the ventricles. This fluid puts pressure on the brain, forcing it against the skull and enlarging the ventricles. In infants, this fluid accumulation often results in bulging of the fontanelle (soft spot) and abnormally rapid head growth. The head enlarges because the bony plates making up the skull have not yet fused together. In preemies the most common cause of hydrocephalus is intraventricular hemorrhage.
Ileal Perforation
Puncture or hole in the last part of the small bowel (ileum). This usually occurs spontaneously in extremely premature babies. Its cause is unknown. Often an ileal perforation requires surgery to form an ileostomy and to repair the hole in the bowel. Some NICUs have reported success simply by putting a piece of drainage tubing into the abdomen to drain out the infection and let the perforation seal on its own.
Incubator
Another name for an isolette.
Intracranial Hemorrhage
Bleeding within the skull. Bleeding most often occurs within the ventricles of premature infants, but it can occur anywhere within or on the outside of the brain.
Intrauterine Growth Restriction (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.
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.
Meconium Aspiration Syndrome (MAS)
Respiratory disease caused when babies inhale meconium or meconium-stained amniotic fluid into their lungs; characterized by mild to severe respiratory distress.
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.
Nebulizer Treatment
A nebulizer humidifies air and/or oxygen that is passed to the infant. At home, a nebulizer is a way of delivering medication — it transforms medicine into droplet form for inhalation. Used for a variety of lung problems.
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.
Neonate
A term used to describe an infant during the first 30 days of life.
Neonatologist
A pediatrician who has received 4-6 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.
NPO
An abbreviation for a Latin term that means "nothing by mouth" — i.e., no food or water.
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.
Persistent Pulmonary Hypertension of the Newborn (PPHN)
High blood pressure in the lungs, which causes the small blood vessels in the lungs to become progressively narrower. It can lead to breathing problems and reduced levels of oxygen in the blood. Sometimes treated with nitric oxide, a gas naturally produced by the body that can help expand blood vessels.
PICC line or Central Cath
a thin, flexible tube (catheter) placed in a larger vein or artery to deliver medications or necessary fluids and nutrients to the body. Broviac catheters are usually placed in the upper chest and tunnel under the skin to enter the vena cava, the large blood vessel in the center of the body carrying blood to the heart. PICC lines (percutaneously inserted central catheters) are usually threaded through a vein in the arm to the vena cava. Central catheters also include umbilical venous and umbilical artery catheters which may be inserted into the vein or artery of the umbilical stump (belly button) shortly after birth.
Pneumothorax
When air from the baby's lungs leaks out into the space between the baby's lungs and chest wall. While small leaks may cause no problems and require no treatment, larger leaks may cause serious complications such as lung collapse and may need to be repaired with surgery.
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. For more information, read the RDS Fact Sheet provided by the American Lung Association®.
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. For more information, visit the MedImmune website.
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).
Retraction
An abnormal sucking in of the chest during breathing, indicating that the baby is working too hard to breathe.
Seizure
A "short-circuiting" of electrical impulses in the brain, resulting from a variety of causes. Seizures can generally be classified as either "simple" (no change in level of consciousness) or "complex" (when there is a change in consciousness). Seizures may also be classified as "generalized" (the baby's whole body is affected) or "focal" (only one part or side of the body is affected).
Sepsis
A potentially dangerous infection of the bloodstream which occurs when the body's normal reaction to inflammation or a bacterial infection goes into overdrive. Certain lab tests, cultures, and x-rays can help diagnose this condition, which is treated with antibiotics. Also known as Systemic Inflammatory Response Syndrome (SIRS).
Septicaemia is sepsis of the bloodstream caused by bacteremia, which is the presence of bacteria in the bloodstream, but this term is also sometimes used to refer to sepsis in general.
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.
Tachycardia
A faster than normal heart rate.
Tachypnea
A faster than normal respiratory rate.
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.
Ventriculoperitoneal Shunt
A plastic catheter (shunt) surgically placed in the ventricle of the brain to drain spinal fluid from the brain into the abdominal cavity. Used to treat hydrocephalus.
Of course these are not all the terms we hear and see, if you have anymore NICU terms we should add let me know and I will edit the post as an ongoing update so we can grow our glossary!
*These are definitions compiled from other resources. Here are the some of the sites:
http://www.ttmf.org/glossary_u-z.html
http://www.goodbeginnings-csmc.org/neonatal/resources/terms.htm
Synagis
Updated qualifications for Synagis in 2010-2011. As you may have already learned RSV is one of the major causes of hospitalization and even death in the premature infant, even after they leave the NICU. However, the insurance companies do not readily cover the only FDA approved medication to help prevent serious RSV- Synagis. Synagis injections are not vaccines, they are a dose of antibodies that last 28=30 days in your child's immune system and help prevent severe RSV disease. They are not guaranteeing your child won't get RSV, but hopefully if they do, the antibodies in their body will help fight it off so the resulting case is not severe. If you have never read about synagis I recommend you go to http://www.synagis.com/how-synagis-works.aspx and talk to your doctor about recommendation for your child. That being said, if you and your doctor decide it's right for your child, that doesn't mean its easy to get! First you need to get an order from your MD, then call your insurance company BEFORE you start them. If you do not talk to your insurance company before and you may be stuck with a hefty bill. The recently updated RSV disease risk assessment states the following:
Children are at high risk for RSV didease:
Children less than or equal to 28 weeks gestation (Born on or after NOV 1, 2009) and are currently less than one year or age at the start of RSV season
29-32 weeks gestation at birth (Born on or after May 1, 2010) and are currently 6 months or younger at he start of RSV season
32-35 weeks gestation at birth (born on or after May 1, 2010) and are less than 6 months of age at the start of RSV season and possess a risk factor *
*Risk factors: school age siblings, day care, less than 12 weeks old at the start of RSV season, exposure to tobacco, less than 2,500 gms at birth, multiple at birth, family hx of asthma, severe neuromuscular disease or congenital abnormalities of the airway
So what if you are over a year at the start of RSV season (this would probably be your second season with a preemie) then you have a different set of risk factors and you need to fight a little harder, insurance companies resist coverage more on the second season for your child
High risk children:
Children with chronic lung disease (BPD eg.) born on or after Nov 1, 2008 and are less than 24 months at the start of RSV season and has had a medical intervention within the last 6 months (oxygen, bronchodialators, diuretic, or corticosteriods)
Children with congenital heart disease born on or after Nov 1, 2008 and are less than 24 months of age at the start of RSV season and have hemodynamically significant CHD.
I hope this information helps. Please use this information when talking with your insurance company about covering synagis for your child. Remember to screen your child early and talk with your insurance company before RSV season is here. My doctor wrote a note to my insurance company about the cost of hospitalization for RSV vs the cost of synagis vaccines and got them to approve coverage for my 24 weeker. Maybe your pediatrician or pulmonogist would be willing to do the same for you. Please update any information or road blocks you guys run into along the way as fall will approach quickly.
Children are at high risk for RSV didease:
Children less than or equal to 28 weeks gestation (Born on or after NOV 1, 2009) and are currently less than one year or age at the start of RSV season
29-32 weeks gestation at birth (Born on or after May 1, 2010) and are currently 6 months or younger at he start of RSV season
32-35 weeks gestation at birth (born on or after May 1, 2010) and are less than 6 months of age at the start of RSV season and possess a risk factor *
*Risk factors: school age siblings, day care, less than 12 weeks old at the start of RSV season, exposure to tobacco, less than 2,500 gms at birth, multiple at birth, family hx of asthma, severe neuromuscular disease or congenital abnormalities of the airway
So what if you are over a year at the start of RSV season (this would probably be your second season with a preemie) then you have a different set of risk factors and you need to fight a little harder, insurance companies resist coverage more on the second season for your child
High risk children:
Children with chronic lung disease (BPD eg.) born on or after Nov 1, 2008 and are less than 24 months at the start of RSV season and has had a medical intervention within the last 6 months (oxygen, bronchodialators, diuretic, or corticosteriods)
Children with congenital heart disease born on or after Nov 1, 2008 and are less than 24 months of age at the start of RSV season and have hemodynamically significant CHD.
I hope this information helps. Please use this information when talking with your insurance company about covering synagis for your child. Remember to screen your child early and talk with your insurance company before RSV season is here. My doctor wrote a note to my insurance company about the cost of hospitalization for RSV vs the cost of synagis vaccines and got them to approve coverage for my 24 weeker. Maybe your pediatrician or pulmonogist would be willing to do the same for you. Please update any information or road blocks you guys run into along the way as fall will approach quickly.
Welcome
As a mom of two preemies and an active member in the preemie community, I decided to start this blog to give preemie moms a place to learn together, chat and vent about all things preemie! Raising a premature baby does not end when you leave the NICU, don't we all wish it did! I have had the blessing of an amazing support system along the way of my journey and I would love to help facilitate that for other parents of preemies!
I am going to post information and research that is in the forefront of premature literature right now, however, I would love for everyone to post and questions/concerns or issues that could be brought up for discussion or research. Please pass the blog along to other preemie parents you know, the more followers we have, the more we all learn!
Thanks so much and God bless!
I am going to post information and research that is in the forefront of premature literature right now, however, I would love for everyone to post and questions/concerns or issues that could be brought up for discussion or research. Please pass the blog along to other preemie parents you know, the more followers we have, the more we all learn!
Thanks so much and God bless!
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