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For those of you who have found this page through a search for information on a preemie in your life, welcome. I have been where you are and I understand your pain. I've been there. For those of you who are here out of curiosity, read on, you never know when you or someone close to you will need the information you will find here.
During a time when the medical staff is bound to tell parents of preemies what seems like nothing but bad news and scary realities, what those parents need (and I can attest to this by the search terms ending up here) is hope and to see and hear the positive outcomes for other people out there.
Please remember to bookmark this page. I know from experience that during your search there will be information you want to read again. It may be because you have forgot what you read due to the hoards of information that is being thrown at you so very quickly or because you have found a glimmer of hope and you want to read it again and again and again. I know I did both several times. As well, as I gather more useful information on prematurity I will update this page rather than post it on the regular blog pages.
My name is Korrina and I am the mother of two beautiful twin girls. Lena and Kassie are former 24 weekers. They were born in October 2006 at 24 weeks, 6 days gestation. Lena was 1lb 7oz (647g) and Kassie was 1lb 5oz (600g). Like most preemie moms I do not have joyous memories of the birth of my children and I often feel like I got ripped off. I loved being pregnant. My girls were born very unexpectedly. I did not have any warning, no cramping, no bed rest, no steroids, nothing. I was in the hospital for a total of 4 hours before the girls were born. I spent most of those on anti-partum waiting for a Doctor because other than a little bleeding, I felt fine. The birth of our girls was filled with disbelief, panic and horror. No one experiences happiness delivering babies so young when you know what it means for them. I could not even cry. The doctor told me I had to stop crying because when I cried, I pushed and I could not push I needed to leave them in as long as I could, and they were not ready to deliver my babies yet. I did not want to cry for me, I needed to cry for them I was terrified for them. I am an educated woman I knew exactly what would be in store for my babies. I knew they would need to fight just to survive.
We only got to see our little fighters for a moment before they took them to the NICU. They were so tiny and fragile. We did not see them again for 5 hours, they had to be placed on ventilators and given IVs and arterial lines and examined. When we finally saw them it broke our heart. There were more tubes than baby. Their skin was transparent, their eyes were fused shut, so delicate and helpless. So fragile. The pain is compounded by the fact that it hurts them when you touch them. All you want to do is hold them and protect them and all you can do is gently lay one finger on their delicate skin ever so gently just to let them know your there, but only for a moment so they don't get cold. We had our girls baptized that night by the hospital chaplain.
The day after they were born, my husband and I met with the neonatologist. He told us about all of the possible complications of prematurity from head to toe. He needed us to understand what was going to happen to our little girls. He told us because they were micro-preemies (under 1kg) that they were difficult to work on. As well, due to their extreme prematurity, they were going to have problems. It was not a matter of if but when. As we were having this conversation, he was paged by Lena's nurse, Lena was having a pulmonary hemorrhage and he needed to leave us to help her. All we could do was wait and wonder. When he returned he continued to tell us of all of the short term and long term complications of prematurity. He then asked us if we wanted to continue their care, did we want to keep them on life support. We told him to do everything he could to help our little angles. He then took us to the girls bedsides and told us that he did not think they were going to make it, they were getting sicker by the minute and he believed they both would die. I could not leave their sides.
The next day we were informed that both girls were suffering from Intra-ventricular Brain Hemorrhages. Initially they were a small grade 2, not expected to cause much damage, after a few days of uncontrolled blood pressure and several other problems, the IVH diagnosis for both girls was upgraded to a grade 3 on one side and a grade 4 on the other. Each girl had them on opposite sides. We were told that IF the girls lived, both girls would have brain damage, they would have severe cerebral palsy among other things and would never be able to be independent. We were asked again if we wanted to continue their life support. My husband and I were emotional wrecks, we have never cried so many tears in our lives. How do make a decision like that for your child? To chose between severe handicaps and death doesn't seem like much of a choice.
After much soul searching long and hard and after finding success stories of other children who were given the same diagnosis we decided to let the girls tell us when they couldn't fight anymore. They were strong little fighters, so determined and full of spirit, so we fought with them day after day. I have never cried so many tears in my life or bargained with God so much. The guardian angels heard from me daily and on the bad days hourly.
I can not count the number of hours I spent at the girls bedsides, or the trips to and from the hospital, the number of times I talked to doctors, or told the girls we would not give up on them as long as they were fighting. I read them stories, snag them songs and left music for the nurses to play when I couldn't be there. When I wasn't at the hospital I spent a lot of time looking for hope. I found many many stories on-line and in books about kids who had beaten the odds. Kids whose parents just had a feeling that things were going to be okay and fought with their kids. My husband and I knew in our hearts that the girls were fighters and that with our help they could beat the odds. We had read over and over again that a babies brain is not hard wired and is still forming pathways, therefore with stimulation new pathways can overcome the brain damage that had occurred. We had even read that preemie brains are more plastic than the average baby's brain. So we try to stimulate the girls as much as we can.
Four months to the day after several operations, transfusions, IVs, infections, medical procedures and on low flow oxygen therapy we came home from the NICU. We have been at home now for almost as long as we were in the NICU. When we were there the time seemed to stand still. It felt like we were never going to leave that place. Now I can't believe how fast the time has gone by. Looking back, the NICU days even went by fast, it just didn't feel like it then.
The girls are almost 8 months old, 4 months 3 weeks corrected and they are doing great. They are developing like normal little girls. All be it a little slower than the average term baby but all preemies develop slower than term babies. Both of our girls favor one hand over the other, corresponding with the side their brains incurred damage. They use both hands they just "forget" to use the one that is not dominant. Both kick, smile, giggle and generally act like normal babies. In fact our family doctor is very impressed with them, they rate only a couple weeks behind for their corrected age on the baby development checklists her office uses, not bad for a couple of little girls who weren't supposed to live. We see a physical therapist and an occupational therapist once every 2 weeks just to keep tabs on their motor development. Lena has a few tight muscles that we are working on and stretching as often as we can and both girls work on using both hands and developing core strength through tummy play etc. So far so good. My husband and I are waiting for the day when we can hold the girls by the hand and walk into the NICU and introduce them to the doctors who said they would not make it, let alone walk.
While my girls were in the NICU two of my aunts searched the Internet high and low and compiled a pdf document of miracle babies. They printed it and gave it to us so that when all we heard was negative, negative, negative and we were down we were able to read stories with positive outcomes so that we could regain hope for our little fighters. I would like to share it with you. You will be able to see pictures of, and read stories of other parents with preemies who faced the same scary situations and have hope and a miracle to show for their faith. The stories were gathered from around the Internet, and links to those sites are included. Other links are also included. You will find it here .
Please visit The Tiny Miracles Foundation.The glossary of medical terms relating to premature infants found at the end of this post is also found there. I have listed the terms below so that no matter what term you were searching, you will find this post through the search engines. Credit for the definitions should go to TTMF, not myself.
During my NICU journey I found countless stories of hope and courage as well as the support and understanding I needed through the March of Dimes. I hope you find some of what you need there too.
Follow my blog for for updates of the girls. I update pictures of them almost daily and when life is not too crazy, I try to post daily as well. So please follow us through our journey as we continue to cope with our life as a micropreemie family.
GLOSSARY OF PREEMIE TERMS
Abduction
The movement of an arm or leg away from the midline of the body. Abduction of both legs spreads the legs. The opposite of abduction is adduction; adduction of the legs brings them together.
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.
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.
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.
BROVIAC® Catheter
Type of intravenous tube used to give fluids and medications to infants or children. The catheter is placed in a major vein of the body during surgery. The BROVIAC® catheter is designed to stay in place over many months, if needed. There are other types of catheters with different names, all of which serve the same function.
Case Manager
A patient advocate who coordinates health services and home care with the insurance company during hospitalization.
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.
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®.
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.
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.
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
Planned use of physical therapy and other interventions in the first few years of a child’s life to enhance the child’s development. Connecticut’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.
Fontanelle
The soft spot on the top of the head. At birth the skull is made of up of several plates of bone; it is not a single, solid bone. The spaces between the bone plates allow the skull to expand as the brain grows. Where four of these bony skull plates come together it forms a soft spot in the skull called a fontanelle. There is no bone in these soft spots, making these areas softer than the surrounding areas. There are usually two soft spots in the skull of a newborn, the anterior and the posterior fontanelle; both usually close by about 18 months of age.
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.
Grasping Reflex
A newborn’s reflexive grab at an object, such as a finger, when it touches her hand. This grasp may be strong enough to support the infant’s own weight, but doesn’t last very long. This reflex lasts until a baby is 3 or 4 months old. Newborns have many naturally occurring reflexes.
Hearing Screen
Test to examine the hearing of a newborn infant. All newborn infants born in Connecticut have a hearing screen to be sure they are able to hear.
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).
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.
Hyperbilirubinemia
Another name for jaundice.
IDEA
An acronym for the Individuals with Disabilities Education Act, which provides grants to states to support services, including evaluation and assessment, for young children who have or are at risk of developmental delays/disabilities. Birth To Three is a program under IDEA.
Individualized Family Service Plan (IFSP)
A written statement for an infant or toddler developed by a team of people who have worked with the child and the family. The IFSP describes the child’s development levels, family information, major outcomes expected to be achieved for the child and family, the services the child will be receiving, when and where the child will receive these services, and the steps to be taken to support the transition of the child to another program.
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 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.
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. 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.
Level
A marker of the level of infant care a NICU can provide, usually expressed as 1, 2 and 3. Click here for an explanation of the different levels.
Low Birth Weight
Any baby with a birth weight under 2,500 grams (about 5? pounds) is a low birth weight baby (LBW).
Meconium
A dark green, sticky mucus, a mixture of amniotic fluid and secretions from the intestinal glands, normally found in infants’ intestines. It is the first stool passed by the newborn. Passage of meconium within the uterus before birth can be a sign of fetal distress. The meconium is very irritating to the lungs.
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.
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.”
Moro Reflex
A newborn reflex. The automatic response to loud noises or sudden movements in which a newborn will extend his arms and legs, arch his back, and sometimes cry out. Newborns can have this reaction even during sleep, but lose it after a few months.
Motor Skills
Gross motor skills are the movements that use the large muscles in the arms, legs, and torso, such as running and jumping. Fine motor skills are the small muscle movements used to grasp and manipulate objects, like picking up a Cheerio or using a crayon.
Multidisciplinary
Many different areas of expertise or specialization coming together to provide comprehensive care. Examples include medicine, nursing, pharmacy, social work, physical therapy and respiratory therapy.
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.
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.
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.
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.
Periventricular Leukomalacia (PVL)
Within our brains are two small fluid-filled areas called ventricles. Cerebrospinal fluid is made within these ventricles. Periventricular tissue is just to the right and left sides of the ventricles. The tissue gets its blood supply from the arteries just before the arteries narrow down into capillaries. If the periventricular tissue does not receive an adequate blood supply, the tissue may die. When the tissue dies, it leaves fluid in its place, which appears as a cyst.
The cysts themselves are not a problem, but they represent brain tissue that has died and been replaced by fluid. PVL is the appearance of these cysts on an ultrasound, CT, or MRI scan of the head. The brain tissue that has been lost is important to the control of muscle movements in the legs and sometimes in the arms. PVL is often associated with cerebral palsy and other developmental problems.
Phototherapy
Light therapy to treat jaundice.
Premature Baby
A baby born three or more weeks before the due date.
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).
Retrolental Fibroplasia (RLF)
An old name for retinopathy of prematurity.
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
Term for blood oxygen saturation.
Small for Gestational Age (SGA)
Children who are below the 10th percentile — i.e., smaller than 90% of other infants — are considered small for gestational age. Being small for gestational age has several names, each with a slightly different implication, including: intrauterine growth retardation, small for dates, dysmature, and light for dates.
Social Worker
Trained professional who helps coordinate social services available to families and also helps families understand and use their insurance coverage. They can help families access services available through governmental and private agencies. Some social workers also act as counselors for parents undergoing personal or family stress while their baby in a NICU.
Sonogram
Another name for an ultrasound.
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.
Synchronizer
Small, soft sensor attached to the infant’s abdomen and certain types of ventilators that tell the ventilator when the infant is taking a breath. It helps to match ventilator support with the infant’s own breathing efforts. When the baby starts to take a breath, the synchronizer triggers the ventilator to provide a ventilator breath to the infant. Other types of ventilators use sensors near the breathing tube to sense when the child is breathing in.
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.
Tone
Passive resistance to movement of the extremities is called tone. Normally infants give only a moderate amount of resistance to you when you move their extremities. The amount of tone present is one way of assessing the condition of the nervous and muscular system in an infant.
Infants with too much tone, too much resistance to passive movement, are called hypertonic and an extreme example of this is spasticity. Infants with too little tone (too little resistance to passive movement) are called hypotonic. In many cases, hypotonia can mean simply low muscle tone and increased flexibility or laxity of ligaments; in one who is severely ill it can mean an inability to sit up, crawl, walk, or eat correctly.
Tonic Neck Reflex
A newborn reflex that resembles a fencing position. When your infant’s head is turned to the side, one arm will straighten, the opposite arm will bend, and often one knee will significantly bend. You won’t see this if your baby is crying and this reaction usually disappears between 5 to 7 months of age. Infants vary in the degree to which this reflex is obvious.
Transient Tachypnea of the Newborn (TTNB)
Fast breathing that slowly becomes normal. It is thought to be caused by slow or delayed reabsorption of fetal lung fluid, and is more common in babies delivered by cesarean delivery and in those who are slightly preterm.
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.
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.
There are two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is.
-Albert Einstein (fellow preemie)
God Bless!
Hello,
It is so enlightening to read about other parents going/having gone through what we are now experiencing. Our twins were born at 25 weeks 3 days gestation - our son weighing 1lb 9oz, daughter at 1lb 8oz. Our angel of a son peacefully passed away after 23.5 hours of life but our daughter is a fighter - 3 weeks 2 days now. I have cried every day since their birth. She is experiencing some challenges but I'm faithful that she will overcome.
Larisa Johnson
New Providence, BAHAMAS
Posted by: Larisa Johnson | August 23, 2008 at 07:34 AM
hi
spent 6 wks in NICU (visiting daily) with my twin girls - strangest time of my life so far and v emotional. One of the nurses thought I was post-natally depressed but it was just so emotional saying bye every day. they are fine now - nearly 3 and now going through possible diagnosis of CP as still not walking but would not be without my little angels! have fun with yours too,
best wishes,
zsaz
Posted by: Zsaz | March 18, 2008 at 03:39 PM
We have Luciella's story on a web
page below feel free to read her story as we continue to stay by her side in the NICU.
www.caringbridge.org/visit/luciellaelainebandemer
Love,
The Bandemers
Michigan
Posted by: Luicella Bandemer | January 07, 2008 at 08:04 PM
We are in the middle of this right now. Our Luciella was born at 1 lb 11 1/2 inches long November 30,2007 she is now 1 month old (31 weeks gestation) and 1 lb 11oz. Thank you for this web page it brings hope. Our little one is having liver issues and many more we cry every night too.
Deanna Bandemer
Michigan
Posted by: Luicella Bandemer | January 07, 2008 at 07:59 PM
After going through the almost same experience. It was so hard and lonely to go through, as I chose only to talk about our situation with the health care professionals. Some people just tended to be so negative. Our daughter Aubrey was born, with no signs of labor, no pain. I went in for my 6 month check up and I was dilated to a 4 with a buldging bag. She weighed 1.4 born at 24.1 weeks. She is reaching her milestones at her adjusted age. I am just so glad to see her smile, laugh and succeed. My heart was open and I let her make the choices, and she fought, and so did I. Thank you for sharing your web-site.
Posted by: Laura DeVries | December 11, 2007 at 08:23 AM
I enjoyed reading your story. I feel thats all I do is search the internet high and low everyday researching about preemies. My baby came at 27weeks and weighed 979grams or 2lbs 2oz. I like to read other peoples stories and hear if they are similar to mine. Write me back if you want to.
thanks, alycen
Posted by: alycen | November 25, 2007 at 09:46 PM
Hi Korrina,
I'm Nur Azian fm Singapore. I was searching informations regarding liver disease,or immaturity of liver in prem babies & was linked to yr webpage. Reading yr journey with yr twins gives a lil' support & hope for me, knowing that I'm not alone & I need to keep supporting my gal so she can keep fighting.
On June 23rd I gave birth to a baby gal, Iffah Batrisyia, @ 29wks 6days, weighing 1500grms. U can view pics of her @ http://nurman80.multiply.com. She was diagnosed with NEC on July 13th & had underwent surgery. After e surgery Iffah showed consistent +ve signs of recovery. Last Thursday she was supposed to undergo her 2nd surgery to close her stoma on her tummy. My husband & I were so thrilled, thinking Iffah's journey thru' this storm is going to be over soon. On wed e drs took some blood for routine test & e long line was back again put into her vein. That nite e blood result was not good, & e surgery had to be cancelled. Her jaundice is on e high side, much higher than e one last tested in July somewhere a week after her surgery.
Last Monday I decided to start back to work, cos' I wanted to save my 3rd mth maternity leave when Iffah's really ready to go home. That day too another blood test was done on Iffah. I called e Special Care Nursery unit to get e result. There's still no improvement, e nurse replied. I was depressed hence had informed my superior that I wouldn't be coming to work this week. Yesterday I asked e doctors to explain to me on Ifah's jaundice condition. e bilirubin level went down, but when they calculated e conjugated fraction to see e trend, it actually increase. I read in http://www.childliverdisease.org/education/yellowalert if the conjugated fraction is greater than 20%, e jaundice can be a cause fm liver disease. They also did a liver scan & notice the common bile duct couldn't be seen.
Today I was searching high & low again in e net, what could be e worse possible outcome to my baby.
I wish all e best with u & family.
Posted by: Nur Azian | August 21, 2007 at 09:03 PM
Auntie and Auntie LindaC did all that for you because you've brought so much happiness to our lives... how could we not try give some back to you when you needed it most.
We both always knew that someday you'd be doing this and that the book we made together (miles of distance didn't prevent us being able to do that together) would be something you could let another mom in those shoes read.
I'm glad to see that you've decided to share the stuff in that old post from my blog, with your new readers. Although I still get many visitors looking for preemie information to it, your posting some of it here will guarantee that many more parents will come across those terms and the links.
Bravo to you and hubby for having the courage you've shown. Your mom is right on the money when she describes you as being who she looks up to now.
Much love always, and may you know that the prayers of a multitude of strangers as well as loved ones are always and still with your family. I too, can't wait for the day you walk those little angels in to see those doctors! I'll come with pom poms!
Auntie Fracas.
Posted by: Auntie | June 24, 2007 at 03:16 PM