Screening Tests

Hearing Screen
Premature babies are more likely to have hearing problems then full term infants. A hearing screen is very important in babies because hearing loss may be treated. Untreated, the baby's learning and development will be delayed.

A special test called a Brainstem Auditory Evokes Response (BAER) is often used to check a baby's hearing before six months of age. For this test, monitor pads (like the heart rate leads) are placed on the baby's scalp. He listens to clicks at different volumes through earphones while he is quite or asleep. The information is recorded by a computer and is used to see how the brain responded to the sounds. This test is more accurate as the baby matures, so sometimes a baby my need to have this test repeated when he is between three and six months of age (corrected). An abnormal test does not always mean a baby is deaf or has serious hearing problem. It means we need to follow him until he is old enough to be tested more accurately.

Eye Exam
Before a baby is discharged, he will have his eyes checked for prematurity-related problems. If a baby is in the nursery for a long time, his eyes will first be checked at 5 to 6 weeks of age. To examine the baby's eyes, a series of eye drops are placed in his eyes to pen the pupils so the eye doctor can see inside. A sterile intrument is placed on the eye to hold it still (Emily hasn't had that). Although it looks uncomfortable and the baby cries (Emily has been known to throw up!), it doesn't injure the baby. This examination is important because one third of all premature infants develop an eye problem called ROP (see other post).

Apnea Screen
A sleep study is ordered when a baby is almost ready to go home. It is usually done on all infants who where less then 35 weeks gestational age or who have an apnea problem (stoppage of breathing). It is very similar to the monitor the baby is on now. The study is run for 12 hours and records on paper the baby's heart and breathing rates. Results of this test will let the baby's doctor know if he needs to go home on a monitor.

About Emily's Eyes

The Eye
When a baby is growing inside it's mother, she is in a protected environment. The baby develops slowly, until she is able to continue growing outside the mother. When a baby is born prematurely, the retnas of the baby's eyes are not fully developed.

The retina is the inner lining on the back wall of the eyeball. The retnina is the part of the eye that receives sight through the pupil and sends it to the brain. (Think of the eye as a camera and the retina the film.) The retina receives blood through blood vessels. These blood vessels are the last part of the eye to develop just before a full-term baby is born.

What is Retinopathy of Prematurity?
Retinopathy of prematurity (ROP) is the name of a disease that frequently affects the eyes of very small premature babies when the blood vessels in the eyes do not develop the way they should. In spite of the best care hospitals can give, ROP still develops in certain infants. We have noticed that ROP is more likely in the very smallest babies who have the most complications. Signs are usually apparent while they are still in the ICN.

ROP can cause blindness, but not for most babies0. If ROP does develop, one of the following may occur:
1) In the majority of premature babies with ROP, The blood vessels that did not grow correctly heal completely before the baby is one year old.
2) In some infants, the blood vessels that did not grow correctly leaving scaring in the retina when they heal. These babies my have to wear glasses because they are nearsighted (myopic). The may also develop lazy eye (strabismus). Medical care can usually correct these problems if the child is seen by an eye physician at an early age. It is important that an ophthalmologist continue to examine the child's eyes regularly to be sure they reach school age with the best vision possible.

Sometimes, ROP leaves more sever scaring in the retina that might cause eye problems that cannot be fixed by glasses or even by surgery. To control the damage as much as possible, these children need medical eye care regularly for the rest of their life.

3) When scaring in the eye from ROP is the most severe, the blood vessels in the retina keep on growing incorrectly and form a large amount of scar tissue, which can shrink and pull the retina loose from the inside of the eye. This is called retinal detachment. Retinal detachment usually means that the baby will not be able to see well or she may become blind. This occurs in approximately 5% of infants with ROP.

Apnea

Apnea is a pause in breathing that has one or more of the following characteristics:

• lasts more than one to 20 seconds
• is associated with the baby's color changing to pale, purplish or blue
• is associated with bradycardia or a slowing of the heart rate

Premature babies have apnea because they have immature respitratory centers in the brain. Preemeies normally have burst of big breaths followed by periods of shallow breathing or pauses. Apnea is most common when the baby is sleeping. Apnea of prematurity is by far the most common cause of apnea in a premature infant, but apnea can be caused or increased by many problems including infection, low blood sugar, patent ductuse arteriosus, seizures, high or low body temperture, brain injury or insufficient oxygen.

Apnea of premaureity markedly improves or goes away by the time the baby nears her due date. There are several treatments possible. A baby may be treated with one or more of the following:

• Medications that stimulate breathing. Commonly used drugs include caffeine, theophylline, or aminophylline.
• CPAP
• Mechanical ventilation (breathing machine) If the apnea is sever, the baby may need a few breaths from the ventilator every minute. These might be given at regular intervals or only if apnea occurs.

A baby's respirations are monitored continuously if she is at risk for apnea. An alarm will sound if there is no breath for a set number of seconds. If the alarm goes off the nurse will check to see if she is breathing, if there is a change in color of if the heart rate is falling. False alarms occur often. The nurse may stimulate the baby if the baby needs a reminder to breath, or she bay give the baby an few breaths with a bag and mask, or extra breaths on the mechanical ventilator.

Most infants are over their apnea completely when they go home; however, some babies reach all other criteria for discharge before their apnea is completely gone. Some babies are candidates for home apnea monitoring. A baby would be a canadiate for home apnea monitoring if:

• she has apnea that is heart and she recovers without any stimulation;
• She has no color change or brady cardia with the apnea
• the apnea is not expected to go away in the next several days or
• parent has completed home apnea training and a course in CPR

Definitions

Apnea- A stopping of breathing of forgetting to breath, usually temporary and of no harm as long as the baby is monitored.

Blood Culture - A blood test which screens for bacterial infections. It takes 24 to 72 hours for test results.

Blood Gases - Also refered to as artieal blood gases or capillary blood gases. A lab test for measuring the levels of oxygen, carbon dioxide, and acidity (ph) in the blood. This information helps treat infants with respitory distress.

Bradycardia or Brady - A slowing of the heart rate, usually temporary and of no harm.

Corrected age - The age of premature baby would have been if she had been born on her due date or at 40 weeks gestation.

Cyanosis - Bluish discolaration of the skin and lips due to poor circulation or low oxygen in the blood.

Gestational Age (see also corrected age) - term can be used interchangeably prior to 40 weeks gestation.

Heel Stick - The procedure of drawing blood from the baby's heel for testing.

Low birth weight - A birth weight of less then 2500 grams (about 5 pounds).

Neonate - A newborn baby.

Red Blood Cells - Cells in the blood that pick up oxygen from the lungs and carry it to all the tissues of the body.

Suction - Procedure to remove mucus and secreations from the nose, throat or endotracheal tube using a small plastic tube attached to a vacuum or a bulb syringe.

Tachypnea - Rapid breathing

Bagging - At times a baby will need to be taken away from her breathing support. During these times, a doctor or nurse can use a rubber bag to send oxygen-rich air into her lungs. The power is supplied by a person rather than a machine.

CPAP - Sometimes babies have a hard time keeping their lungs open. A continuous positive airway (CPAP) machine will help. It supplies pressure to keep the lungs open. Then the baby doesn't have to work so hard to breathe.

Oxyhood - When a baby's lungs get stronger she bay use an oxyhood. This is a clear box over her head or covering her body which supplies air with a little extra oxygen. No tubes go down the baby's throat.

IV Feedings - A very sick baby cannot suck, swallow or digest food well. She may get food (nutrition) through an intravenous line. This liquid diet of vitamins and minerals is called hyperalimentation, or "hal" for short. Fats may be supplied by way of intralipids which enter the bloodstream through a tube.

Tube Feeding - As a baby grows, he will receive food through a tube. The most common feeding tubes are an OG (oralgastric) or NG (nasal gastric) tube. These go from the baby's mouth (OG) or nose (NG) to the baby's stomach. Formula or breast milk is slowly pumped or dripped into the baby's body through the tube. As the baby learns to suck and swallow, she will use a bottle. If the mother wishes to breast feed, the baby can nurse at this time.

Pulse Oximeter (Pulse Ox) - Measures the blood oxygen with a light measure.

Complete Blood Count (CBC) - A CBC is done to determine the number and types of cells in the blood. A low red blood cell count or a low platelet count may be a sign of an infection. White blood cells, which fight infections are also counted. Both very high or low counts can mean infection. Too high means that the body is fighting the infection and too low means that the body is being overwhelmed by the infection.

Traveling to See Emily

I belive that there are many people who would like to travel out here to see Emily. Before you do so please note that while we do not wish to offend anyone, we do have to have a few rules and suggestions.

• Please let us know in advance that you are planning to come out. We do not want to have multiple people here all at once.
• Please try to come after April 15th if not later. This is the end of cold and flu season and we don't want Emily to get sick. Also Emily can't really go out of the house before this date so we are homebound anyway.
• If you must come before April 15th, please make any air travel plans flexable. That way if you are feeling the least bit ill then you can reschedual.
• To fly to see us use either Newark Liberty Airport (EWR) or Philadelphia International (PHL). While you can use any of the other New York City airports they are harder to get in and out of.
• We are close to mass transit. To find out more information please e-mail us at littlemissemily@comcast.net

When you arrive to our home please be advised that all of us (including Emily's parents) have a strict policy on seeing Emily. These rules are not to offend but to make it safe for Emily. This first year is critical that she not get sick. As she gets older and at doctor's suggestions, we will ease the rules.

• When you arrive at our house we ask that you take a shower and put the clothes you were wearing on the airplane in the washing machine.
• If you should leave the house and come back again, we request that you change your clothes and wash your hands/lower arms well.
• We also have a strict wear once and then wash policy with respect to our garments in order to prevent spreading germs.

Prior to and while on an airplane please try using saline spray up your nose a few times EVERY hour. This helps to keep the mucus membranes moist and the likelyhood of illness down. You can also try the old standby of Vitamin C, and Beta Carotine in the weeks leading up to your visit to stay well.

Thank you for reading this. With everyone's help Emily will have a very uneventful rest of her first year!

Jennifer and Anthony