Sunday, February 27, 2011

Do's and Don't For Medical Professionals

I came across this article when researching information for you. This is a great list of what you should expect from nurses and medical professionals in a NICU. I remember wondering at times what I should or shouldn't do or say in the NICU when dealing with the staff. I wanted to be as involved as possible, but I also didn't want to get in the way of my baby's care. Towards the end I was extremely comfortable as most people are, but it would have been nice to know early on what behaviors were expected from the NICU staff, what was permissible, what I could ask or do without feeling intimidated. Feel free to print this out, keep it with your information, and use it when you need it. Remember you are in a unique emotional situation and parenting your baby in a NICU is very important for both you and your baby. I hope this list gives you a boost.

The Do's and Dont's of NICU - for Medical Professionals

The experience of parenting a premature infant in the NICU is often overwhelming. Although the health of our baby(s) is our greatest concern, in the day to day life in the NICU, it is the little things that medical professionals do that make a difference. Preemie parents from all over the world came together ( to create a list for nurses and doctors that will help them understand the intricate needs and desires of parents and families. Please feel free to print this list and give it to anyone who may benefit from it.
Please Do...
Do: Ask me what I like to be called. I may or may not want to be called "mom." I would like to be called by my first name.

Do: Send me a Polaroid of my baby when I can't get out of bed because I have had a C-section.

Do: When referring to my baby, please don't call him "your baby" (as if he is your baby) or "the baby." He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name.

Do: Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)

Do: Make a cute nametag for my baby's bed.

Do: If you are the nurse caring for my baby, acknowledge me when I come in the room so I know who you are.

Do: Tell us when I can speak with the doctor.

Do: Promote attachment between parents and their babies. Show me that you are confident I will not cause my child any harm.

Do: Tell me how to read stress cues so I know the best time to touch my baby and when to stop.

Do: Show me how to do things that I can do to help care for my baby.

Do: Realize that once I am able to do some kind of activity for my baby, it is really stressful to have a staff member decline my doing it because they are unable to help.

Do: Acknowledge when we do things correctly, praise us, thank us!

Do: Tell me how to touch my baby in a developmental and soothing way.

Do: Allow me to hold my baby as early as possible-it is the best part of being a parent.

Do: Help me to do Kangaroo Care as early as possible. Please check on me during this time to make sure I am okay.

Do: Encourage us to make a tape to leave in the isolette; singing, talking, or telling stories for my baby. Tell me what I can do to decorate my baby's bed.

Do: Create an environment for my baby that seems healing and supportive (ie. No harsh lights or minimal noise, but cluster care when possible).

Do: Put up a big sign that says, "SHHHH…BABIES ARE SLEEPING!!!!"

Do: Quietly set things down on the isolette---remember the sound inside is much louder!

Do: Take pictures (with a Polaroid or with a disposable camera I have left for you) of our babies when we're not there, or when we're cuddling or spending time with our babies. We may not think to get our cameras out at those special moments, and we may be missing some big ones when we can't be there.

Do: Talk to my child and explain that you are about to touch them.

Do: If you find it necessary to shave my baby's head for an IV, please save a lock of hair from the "haircut."

Do: Provide support without judging.

Do: Realize that every parent is different and responds differently. Find out how we want to deal with things.

Do: Understand that parents, like our children, will have "crisis days" and they may not coincide with the status of my baby.

Do: Work to build genuine connections with parents. Even when there is nothing concrete or specific that you can do, your presence, attention, and compassion bring strength and comfort.

Do: Help parent of preemies build a community by removing obstacles preventing families from finding comfort in the experiences of others. Do what you can to create an environment in which parents can talk and support one another.

Do: Provide honest information and clear explanations. Please allow us to ask questions.

Do: Let us know when tests are being done on our babies (even if it means a quick call to home) and explain what they're for-in parent's terms. (Also let us know if any scheduled tests/procedures have been cancelled and why.)

Do: Let us know that we are allowed to read our baby's chart.

Do: Give us access to as much information as possible. Have a parent library with current books, videos, and a list of websites available. We would love to be able to buy books right there in the hospital-please encourage your gift shop to stock a supply of books and resources that we may purchase to help us through this process.

Do: Give us complete information that is significant to future possible outcomes (concerning all drugs, procedures and alternatives that we can choose from).

Do: Realize that the truth is always easier for us to deal with in the long run. If a bleak prognosis can be expected, that prognosis won't be any easier if it comes as a complete and total shock later on.

Do: Respect parents enough to allow them to feel all their jumbled emotions without running away or minimizing what they feel.

Do: Talk with us about other things than our baby to help us pass the time and get our minds off things (maybe even ask us about the birth or things unrelated to our baby). It's nice to be treated as a friend.

Do: Support us if we are unable to breast-feed/express milk and must use formula for whatever reason.

Do: Refer me to a lactation specialist if I am having trouble lactating or feeling uncomfortable with pumping milk or breast-feeding.

Do: Please respect my efforts in pumping my breast milk and breast feeding my baby. Thaw only what breast milk is necessary for each feeding-it is a precious commodity! Please say only encouraging remarks about my breast-feeding efforts.

Do: Do ask me if I would like to have a screen put up when I am trying to nurse my baby, as it is a very exposing experience with these tiny babies. Please check in with me often when I'm behind the screen, especially when the alarms are going off.

Do: Make sure to let me know when my supply of breast milk is running low so I can make sure to bring some in.

Do: Dress my baby in her own clothes whenever possible.

Do: Find out our schedules so we can be there for feedings, baths, and maybe even a quick holding during weights and isolette changes.

Do: Encourage me to write notes to be left on my child's bed that share my special knowledge of my child with the staff.

Do: Give credence to a parent's intuition about their child. If I tell you, "Something is wrong", act on that information as if it were true.

Do: Congratulate us on our baby's milestones! (Diapers finally taped on, larger diapers, changing to a new type of bed, going to a lower oxygen setting, getting off the vent/CPAP, wearing clothes, learning to suck/swallow, being held, etc.)

Do: If you have not cared for my baby before, please read the chart carefully and note what times I usually come by.

Do: Put graduate pictures of former patients in the waiting room.

Do: Laugh with us.

Do: Cry with us.

Do: Treat us like real parents.

Please Don't...

Don't: Call me "Mom." Please ask me what I would prefer to be called.

Don't: Move the baby without telling me ahead of time, or at least meeting me at the door.

Don't: Tell me how I should be feeling or that I "need to be patient."

Don't: Dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or color changes.

Don't: Assume that I don't care for or love my baby if I don't touch him. I may be very scared or overwhelmed.

Don't: Tell me my baby had a bradycardia because I was touching him, feeding him, or doing something wrong.

Don't: Please never treat me as if I am stupid. All of the medical terms and information are very difficult to understand and comprehend at times, especially since I am probably feeling a tremendous amount of stress.

Don't: Write harsh judgements about me in the nurse's notes, unless the information you are recording is known to you without question from both observation and communication.

Don't: Assume anything about me or my family if we are unable to visit regularly. My family may be very loving and supportive, but cannot come to the NICU for other reasons.

Don't: Sound annoyed or make insensitive comments when I call to check on my baby. The phone is sometimes my only connection to my precious baby.

Don't: Do the tasks that I have already been doing (bath, diapers, feedings, etc.) if you know I am on the way to the nursery. It takes away what little parenting I can do.

Don't: Act as if breast-feeding is not crucial for my baby. There is enough scientific evidence of its importance to preemies that it should be encouraged to breastfeed. However, if I am unable to produce milk, please do not make me feel inadequate by comparing me to all the other mothers who have no problem with lactating.

Don't: Talk loudly or keep the lights on unnecessarily.

Don't: Please be careful to not share information about a baby with the wrong person. Please check and double check that you have the correct information with the correct parent.

Don't: Talk about a baby in a negative way when the parents are gone. It is morally wrong, very unprofessional, and may also hurt other parent's feelings (wondering what they say about my baby when I am not here).

Don't: Try to instill your personal views (philosophies, religion, or ethics) on us. Allow us the same freedom to choose and have our views, as you were allowed to choose and have yours. (This includes miracles happening in the NICU.)

Don't: Be afraid of my emotions, or of your own.

Don't: Let me travel this difficult journey alone.

Thursday, February 24, 2011

SPIN Program And Crib Cards

UC San Diego Health System has launched a new program called the SPIN (Supporting Premature Infant Nutrition) Program. Their mission statement reads, "To create a Center of Excellence in neonatal nutrition focused on the provision, analysis, and research of human milk to improve nutritional and neurodevelopmental outcomes in preterm babies." Their website includes many useful tools for parents and NICU staff about making milk, pumping, logs for moms, maternal education hand outs, crib cards, and milk recipes.

One of my favorite finds on the website are the crib cards guiding a new breastfeeding (pumping) mom from step 1: skin to skin contact through step 5: Getting ready to go home. The cards make the entire process easy to understand for an emotional and tired new preemie mom. The cards could be attached to an isolette or handed out by NICU nurses. We will be including these cards from the Spin Program in our binder of information contained in each NICU gift bag.

Download Crib Cards Here:
For more information visit their website at

Wednesday, February 23, 2011

Rare Form Of Hearing Loss In Preterm Babies

Pre-Term Babies At Higher Risk For Rare Form Of Hearing Loss
Wednesday, February 23rd 2011
February 19-23, 2011, Baltimore: National Institutes of Health (NIH)-supported scientists will be presenting their latest research findings at the 2011 Midwinter Meeting of the Association for Research in Otolaryngology (ARO).

Selective Inner Hair Cell Loss in Premature Infants
Selective loss of key sensory cells is possible sign of auditory neuropathy

premature babies hearing lossIt’s well known that premature babies have a higher risk for hearing loss, but what’s been unclear to this point is the reason why. NIDCD-funded researchers from the Massachusetts Eye and Ear Infirmary, Harvard University, and Universidade de Sao Paolo, Brazil, set out to find the answer by conducting a postmortem examination of the temporal bones—the part of the skull that houses the inner ear—of 50 infants from the neonatal intensive care unit (NICU) of a hospital in San Jose, Costa Rica.
They found that in four out of 27 pre-term babies—eight ears in all—the sensory cells that help amplify sound vibrations, called outer hair cells, appeared healthy, while the sensory cells that convert those vibrations to electrical signals that travel to the brain, the inner hair cells, were preferentially destroyed. Conversely, in the 23 full-term NICU babies, only one ear out of 46 ears showed this selective inner hair cell loss.
The findings are surprising, since outer hair cells are very delicate and most hearing loss in people is due to dysfunction, damage, and death of these sensory cells, in comparison to inner hair cells, which are much more resistant to damage. When inner hair cells are destroyed, the hearing signal never reaches the brain, even if the outer hair cells are still functioning normally. This condition is known as auditory neuropathy.
The findings help explain why other researchers have observed a higher incidence of auditory neuropathy in pre-term babies and suggest that the underlying pathology in auditory neuropathy is not actually due to loss of neurons, as the name implies, but to loss of the inner ear sensory cells that drive them.
Source: National Institute on Deafness and Other Communication Disorders (NIDCD)

article from

Angel Care Monitor Giveaway

Preemie Prints is giving away an Angel Care Monitoring system to a deserving family ($120.00 value). My twins were sent home on pulmonary heart monitors and after they were taken off we moved to the angel care monitoring system. This monitoring system monitors sound and movement. If your baby stops breathing for 15 seconds the alarm will sound. Please read more about the monitors here. I love this monitor and have recommended them to new moms ever since finding out about them. It gives me peace of mind to actually get some rest at night. Since we highly recommend them, one of our donors has graciously donated two systems to us. We are so very appreciative of his donation and thank him! We received our first monitor yesterday and are ready for our first giveaway.

If you meet the following criteria please contact us and share your story about why you would like this monitor. We will choose a deserving family in the next two weeks and deliver the monitor to you. Thank you for participating and cheers to restful sleep and peace of mind...

1. Are you a new parent of a preemie in the Brazos Valley, Houston, or Waco area?
2. Are you close to being discharged or recently at home?
3. Have you joined our network?
4. Would you like an angel care monitoring system for your baby but due to the financial constraints of having a premature baby and spending time in a NICU have not been able to purchase one? 

If you answered yes to all 4 questions please share your story with us here.

Please forward and share this with your friends!

Saturday, February 19, 2011

NICU Terminology

Here are only a few of the common terms you will hear in the NICU:

The movement of an arm or leg away from the midline of the body.
A condition in which the red blood cells in the blood — hematocrit, or “crit” — are lower than normal.
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.
A medication, in intravenous form, used to stimulate an infant’s central nervous system and reduce the incidence of apneic episodes.
Anemia A condition in which the body does not have enough red blood cells.
Apgar Score
A numerical summary of a newborn’s condition at birth based on five different scores, measured at 1 minute and 5 minutes.
Cessation of breathing lasting 20 seconds or longer. Also known as an apneic episodes or apneic spells.
Appropriate for Gestational Age 
A baby whose birth weight falls within the normal range for his or her gestational age.
The accidental sucking in of food particles or fluids into the lungs.
A steroid medication given to the mother before birth to help the baby’s lungs mature more quickly.
Yellow chemical that is a normal waste product from the breakdown of hemoglobin and other similar body components.
Blood Urea Nitrogen 
A blood test that measures how well the kidneys are functioning.
Blood Gas
A blood test used to evaluate an infant’s level of oxygen, carbon dioxide and acid.
Bradycardia – “Brady”
An abnormally low heart rate, during which episodes, 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.”
Brainstem Auditory Evoked Response Test 
A hearing test where a tiny earphone is placed in the baby’s ear to deliver sound. This test measures the electrical activity in your child’s brain in response to the sound.
Bronclmonary Dysplasia 
A chronic lung disease—when the lungs do not work properly and the babies have trouble breathing.
Case Manager
A patient advocate, usually from the Social Work Department of the hospital, who helps to coordinate services and home care with the insurance company while your child is in the hospital.
Central Venous Line 
The central venous line (CVL), also known as a central venous catheter (CVD), is an intravenous tube used to administer fluids and medications.
Cerebrospinal Fluid 
Fluid that circulates around the spinal column and brain.
Charge Nurse
The head nurse in charge of coordinating the nursing staff and care of all babies in the N.I.C.U. There is always one per shift.
Continuous Positive Airway Pressure – CPAP
Oxygen or room air delivered under pressure though either an endotracheal tube or small tubes (prongs/canulas) that are placed in a child’s nostrils.
Early Intervention Program
The use of therapies (Speech, Occupational, Hearing, etc…) in the first few years of a preemie’s life to help with early detection of concerns with developmental milestones.
Echocardiogram – “Echo”
A picture of the heart through ultrasound.
Puffiness or swelling due to fluid retention in the body tissues.
Electrocardiogram – ECG or EKG
A test that records the electrical activity of the heart possibly showing abnormal rhythms (arrhythmias or dysrhythmias) or detect heart muscle damage.
Endotracheal Tube – ETT or ET Tube
A tube placed through the mouth or nose into the throat and through the child’s trachea providing a pathway through which air can reach the lungs.
Extracorporeal Membrane Oxygenation -ECMO
Oxygenation outside the body, or the process of transferring oxygen into the blood and removing carbon dioxide.
Extremely Low Birth Weight- ELBW
A baby that weighs less than 2 pounds, 3 ounces (1,000 grams) at birth.
Removing the Endotracheal Tube (ET Tube) from the baby’s windpipe.
The soft spot on the top of the head.
Gastroesophageal Reflex – GER
The act of the contents on the stomach coming back up into the esophagus.
Gavage Feeding
Feeding a baby through a nasogastric (NG) tube. (Also called tube feeding.)
The period of development from the time of fertilization of the egg, until birth. Any gestation period less than 37 weeks gestation = premature infant.
Basic unit of weight in the metric system (28 grams = one ounce).
Grasping Reflex
A newborn’s reflexive grab at an object, such as a finger, when it touches his/her hand.
Hearing Screen
Test to examine the hearing of a newborn infant.
Heart Murmur
A noise heard between beats of the heart.
Heel Stick
Pricking the baby’s heel to obtain small amounts of blood.
A material in red blood cells that carries oxygen and contains iron.
High Frequency Ventilation 
A special form of mechanical ventilation, designed to help reduce complications to a premature baby’s lungs.
High Frequency Jet Ventilator 
A special ventilator capable of breathing for a baby at rates exceeding those of a normal ventilator (420 BPM, or Breaths Per Minute).
High Frequency Oscillatory Ventilator 
A special ventilator capable of breathing for a baby at rates exceeding those of a normal ventilator (for example, 120 – 1,320 BPM, or Breaths Per Minute).
Hyaline Membrane Disease – HMD
Another name for respiratory distress syndrome. Also known as RDS.
Abnormal accumulation of cerebrospinal fluid within the ventricles of the brain.
Another name for jaundice.
An acronym for the Individuals with Disabilities Education Act.
Is something which happens spontaneously or from an unknown cause.
Individualized Family Service Plan – IFSP
A statement written for an infant or toddler developed by a team of specialists who have worked with the family over a period of time.
A drug used to close a patent ductus arteriosus.
I & O – Input & Output
Input: Refers to the amount of fluids given by oral feedings through an IV. Output: the amount of fluid excreted in the urine or stools.
Ileal Perforation
Puncture or hole in the last part of the small bowel, or ileum.
Also called an Isolette. A premature baby’s bed until they are capable of retaining heat on their own in an open crib.
Intracranial Hemorrhage
Abnormal bleeding within the skull.
Intrauterine Growth Restriction – IUGR
A condition in which the fetus doesn’t grow as it should while in the uterus.
Intravenous – IV
A catheter inserted through the skin into the vein in a baby’s hand, arm, foot, leg or scalp through which nutrients, fluids and medications are administered.
Intraventricular Hemorrhage – IVH
Bleeding into the ventricles within the brain.
A tube inserted into the trachea through the nose or mouth which allows air to reach the lungs.
Another name for an incubator.
The accumulation of a natural waste product, bilirubin, which gives the skin a yellow tint.
Kangaroo Care
Skin-on-skin contact between parent and baby.
The fine, downy hair that often covers the entire body of a prematurely born baby..
Lead Wires
Wires that extend from sensors attached to the baby’s body to the monitor.
Low Birth Weight – LBW
A baby born weighing between 3 lbs. 5 oz. and 5lbs. 8 oz.
Lumbar Puncture – LP
A test involving the insertion of a hollow needle in between the vertebrae of the lumbar region of the back to collect fluid for testing.
Magnetic Resonance Imaging – MRI
Imaging technique that produces a detailed picture of tissue.
Machine that displays the heart and respiratory rates as well as the blood pressure and blood oxygen levels of the baby.
Motor Skills
Defined as either “Gross” (movements using the large muscles in the arms, legs, and torso) or “Fine” (small muscle movements such as grasping and manipulating objects)
Nasal Cannula
Light, flexible tube used to give supplemental oxygen to a child.
Nasogastric Tube – NG Tube
Narrow, flexible tube inserted through the nostril, down the esophagus, and into the stomach. It is used to administer food or to remove air or fluid from the stomach.
A nebulizer humidifies air and/or oxygen as well as delivers medication to a child in vapor form.
Necrotizing Enterocolitis – NEC
The swelling, tenderness and redness of the intestine caused by either an infection or decreased blood supply to the intestine.
Neonatal Intensive Care Unit – N.I.C.U.
The unit of the hospital that cares for preemies and newborn infants with severe medical complications.
The term used for an infant during the first 30 days of life.
The doctor who directs your baby’s care in the NICU.
Acronyms meaning “Nothing by Mouth”
Parenteral Nutrition – Hyperalimentation
A solution administered intravenously directly reaching the child’s bloodstream, and providing necessary nutrients for growth and development. Also known as TPN.
Patent Ductus Arteriosus – PDA
This is a blood vessel that connects the pulmonary artery and the aorta.
Persistent Pulmonary Hypertension of the Newborn
High blood pressure in the lungs, which can often cause breathing problems as well as reduced levels of oxygen in the blood.
“Light” therapy to treat jaundice.
PICC Line 
A special IV line used to provide fluids into a vein.
Air from the lungs leaks into the space between the lungs and chest wall.
Premature Baby
A baby born three or more weeks before the due date.
Pulmonary Interstitial Emphysema
The formation of “bubbles” around the tiny air sacs (the alveoli) of the lungs.
Pulse Oximeter
A machine that monitors the amount of oxygen in the blood.
Respiratory Distress Syndrome – RDS
Respiratory problems due to lung immaturity
Retinopathy of Prematurity – ROP
Scars and abnormal growth of the blood vessels in the retina.
An abnormal sucking in of the chest indicating labored breathing.
Room Air
The air we normally breathe containing 21% oxygen.
Term used for blood oxygen saturation.
A “short-circuiting” of electrical impulses in the brain.
An infection of the bloodstream occurring when the body’s normal reaction to inflammation or infection goes into overdrive.
Social Worker
Trained professional who helps coordinate social services available within the N.I.C.U.
Another name for an ultrasound.
The act of wrapping a baby in a light blanket.
A heart rate that is faster than normal.
Respiratory rate that is faster than normal.
The oral form of a medication used to stimulate an infant’s central nervous system.
Transient Tachypnea of the Newborn 
Fast breathing that slowly becomes normal.
Imaging of body parts using sound waves.
Umbilical Arterial Catheter 
Catheter placed in a belly button artery that is used to take various readings, take blood samples or give
necessary fluids.
Umbilical Venous Catheter
Catheter placed in the belly button vein that is to administer fluids and medications.
A machine that assists in breathing usually due to lung immaturity and the inability of a preemie to breathe on their own.
Ventriculoperitoneal Shunt 
A plastic catheter that is placed (through surgery) into the ventricle of the brain in order to drain spinal fluid.
Very Low Birth Weight 
A baby born weighing between 2lb. 3oz. and 3 lbs. 5 oz.
Vital Signs Monitor
A machine that displays heart and breathing rates as well as blood pressure and oxygenation levels on a computer screen.