Heidi's note:  I do not support the use of WIC and other government social services.

ambu bag (am-boo’)- a mask attached to a bag which is filled with oxygen.  There is a rubber middle that can be squeezed.  It is used to give the baby extra oxygen if the oxygen levels have gone down for some reason.  It is especially used when a baby is on the ventilator.

art line- an abbreviation for “arterial line”.  It is similar to an IV but it is inserted into an artery as opposed to a vein.  It is often considered necessary for the purpose of keeping a close check on oxygen and carbon dioxide levels in a baby that is on a ventilator.

attending- the physician on duty who is ultimately responsible for all care in his/her own specialty

bolus- term that is used to describe any type of fluid that is put in through a tube in a fairly quick way.  This can describe IV fluids or milk that is put down a feeding tube.

catheter- any long, thin tubing.  Different types are used as feeding tubes, for IV lines and for suctioning.

cc- an abbreviation for “cubic centimeters”.  It is a fluid measure.  Approximately 33 cc is equal to 1 ounce.  This term is interchangeable with ml.

charge nurse- nurse on duty who is the supervisor of all other nurses in the same unit.  Also “head nurse”

chart- where ALL information regarding your child is written during the hospital stay.  Physician’s orders, nurse’s notes, medications, special instructions and results of all tests and consultations are kept in this binder.  You have every right to review the chart at any time.  They may want you to  have a doctor present to answer any question, but they can not deny you access to the chart.

child life specialist- people whose job it is to see that anything that might make the hospital stay easier for your child is provided.  i.e. a tape recorder to play tapes from home, a mobile to hang up for visual stimulation, a baby swing for the room, Etc.

code- common term that is used to describe cardiac arrest.

cpt- an abbreviation for “chest physio-therapy”.  A baby that has a lot of congestion in the lungs or is on a ventilator may have difficulty coughing the mucous up on his own.  A special technique is used (sometimes with a special piece of equipment, sometimes with just their hands) to tap on the chest nd back in order to dislodge the mucous from the lungs to enable to baby to get rid of it.

cut down- a technique sometimes resorted to when an arterial line must be placed.  A small incision is made and the line is inserted visually into the artery.  This is common with small babies because their arteries are so small they are often hard to find.

dietitian- a medical professional whose job is to monitor any actual food (formula or breastmilk) that is being given to the baby.  She/he calculates calories and may make suggestions on ways to increase intake.

diuretics- drugs that encourage fluid loss.  They are commonly used after surgery to counteract the retention of fluid which is the body’s natural response to trauma.

DNR- an abbreviation for the term “Do Not Resuscitate”. This is used to indicate that no extreme measures are to be taken in the event of cardiac arrest.

drip- any medication or fluid which is allowed to “drip” into an IV line.

et tube- stands for “endo-tracheal” tube.  This refers to the tube that is put down the throat to enable use of a ventilator.

extubate- removal of the et tube.

fellow- a doctor who is receiving extra years of training in their chosen specialty.

foley- a type of catheter that is inserted into the urethra to allow drainage of the bladder and collection of urine samples.

HMF-  “Human Milk Fortifier” is often used to increase the number of calories in breastmilk that is being tube or bottle-fed to a sick baby.  It was developed for premature infants and may cause electrolyte imbalances or allergic reactions.

hyperal- a typeof IV nutrition that is given when food is not possible or advisable.

ins- the common term for the number of ccs of food, medication and IV fluids taken in during a given time.

intubate- the procedure of putting an et tube into the throat to enable use of the ventilator.

IV- an “intravenous line”.  This is a catheter inserted into a vein for the purpose of administering medication.

kilogram- a metric unit of weight.  One kilogram is equal to 2.2 pounds. (abbr. is k)

lactation consultant- a medical professional (usually board certified- IBCLC) whose job is to help mothers overcome problems to successfully breastfeed their babies.

lactation specialist- often a nurse with some extra knowledge of breastfeeding. She may take the place of a certified LC is some hospitals, but she may not be as knowledgeable as an LC would be.

La Leche League Leader- a mother who has breastfed her own children and who volunteers her time to support breastfeeding mothers and help them through any difficulties that may arise with breastfeeding.  She has a tremendous wealth of resources available and is accredited by LLLInternational to counsel breastfeeding mothers.

neonatologist- this is a doctor who specializes in the care of newborn babies.

ng tube- a “naso-gastric tube” which is put into the stomach through the nose.  This is used for feeding babies that are not capable of eating normally and for giving “oral” medications that do not have an IV equivalent.

npo- “non per os” nothing by mouth.

O2- abbreviation for oxygen.

OT- abbreviation for “occupational therapist”.  An OT works with babies that have feeding problems and also works with people who have difficulty with fine motor control.

outs- the amount of fluid (vomit, urine, blood) and bodily waste that is lost in a given time period.  This is compared to the “ins”.

pediatric intensivist- a doctor that specializes in critical care of children.

po- “per os” by mouth.

port- the place in an IV or tube that is used to put medications or food into.

pulse-ox- special monitor that uses a glowing bandaid (that’s what it looks like) to monitor the heartrate and the level of oxygenation in the blood.

q- stands for “every” and is used as in “q-4” to mean that something is supposed to happen every 4 hours.  This refers to medications, taking vital signs and similar purposes.

resident- a doctor who is in training before going on to their own practice.

RT- this stands for “respiratory therapist”.  These are the people who adjust oxygen levels, monitor ventilators, administer breathing treatments and do “cpt”.

sat- the oxygen saturation level given by the pulse-ox and it is expressed in a percentage.

SNS- “Supplemental Nutrition System” and is sometimes used to allow weak babies to be fed at the breast.  It is also used to enable adoptive mothers to nurse their babies.

social worker- the person who helps ensure that you have adequate financial help and can help arrange for social support if you have none.

suction- the process by which excess mucous is removed from the nose, mouth and (in the case of a ventilator dependent baby) the lungs.  A rigid tube (yankeuer [yon’ker]) or a catheter is attached to a vacuum source and it is then used to suck out the mucous.

tech- any person whose only job is to operate some type of equipment.  i.e. x-ray, EEG, sonogram machine operators.

vent- an abbreviation for the term “ventilator”.

ventilator- a machine that delivers oxygen and can actually breathe for a baby that is not able to breathe on his own.

yankeuer (yon’ker)- a rigid plastic rod that is used with a vacuum source for suctioning.

It is helpful to understand exactly who is in charge and what the role is of each person involved in your child’s care during a hospitalization.  Each person has their own duties and responsibilities and different people will sometimes give conflicting answers to the same question.

Nurses- The nurses are your child’s most constant companions.  They can answer a lot of little questions. They can not authorize policy or medication changes.  They can not officially inform you of options the doctors have not already offered.  If you take the time to be friendly with the nurses, they sometimes drop helpful comments about your rights and options in a given situation.  They’re also pretty good at letting you know when they’re on your side in a dispute.  Keep in mind at all times, though, that their jobs depend on following doctor’s orders and hospital policies.  Any concerns about a particular nurse should be brought to the attention of the charge nurse on duty.

Residents- These are the “student” doctors.  They are M.D.s that are gaining experience before going on to independent practice.  They rotate through different parts of the hospital on a monthly basis.  They are the ones who will make initial assessments, write orders and be the first called for any problems.  They are under the direct supervision of “senior” residents, fellows and, finally, attending physicians.  They can not make any policy changes or (often) even medication changes without consulting a senior resident or fellow.

Fellows- Fellows have finished their residency and are now spending additional years learning about the specialty they wish to practice.  While there are some fellows in general pediatrics, you will be more likely to have extensive contact with them in the subspecialties.  i.e. pediatric cardiology, pediatric neurology, etc.  They have a little more leeway than residents do, but they rarely take action on any but the most minor of problems without consulting an attending.

Attending physician-  This is the top doctor in any non-surgical setting.  Each specialty has its own attending on call at all times.  Doctors are very careful not to invade on one another's territory once additional specialists are called in to consult on a particular problem.  Whether you are dealing with a concern, a policy or a course of treatment, you must go to the proper person to have it resolved: i.e. the pediatric cardiologist will not change an order by the pediatric neurologist.  The nurses can help you out if you’re confused about who’s who.

Surgeons-  They have complete control over anything that involves surgery, post-operative recovery or complications related to surgery.  They tend to have a poor bedside manner and they are not used to being questioned.  By being respectful of their skills and experience and being prepared to defend your requests, you can usually reason with them.  They are very precise people, so try to be clear and stick to the point.

Chaplains-  If all else fails, the chaplain’s office holds surprisingly strong influence.  These are the compassion people.  Their personal faith can vary widely, but they all have the utmost respect for faiths other than their own.  My favorite Bible verse in support of breastfeeding is Lamentations 4:3,4.  It is my understanding that the Koran also holds breastfeeding to be a sacred duty.  While religious reasons for your requests are not required, they usually add a little more weight to your concerns.

Administration-  Each department has its own “Head”.  There is one for each specialty, one for the pediatrics division and ultimately, one for the entire hospital.  You have the right to contact any of these people with your problem.  Be aware, however, that if you skip any of the other layers of responsible people in the chain of command, you may find yourself being referred back to that level before receiving any help from higher up.

You are always the ultimate decision-maker.  Sometimes it doesn’t seem that what the parents think really matter at all in a hospital setting, but that is far from the truth. You have the final say in all treatments and you have a right to have each and every one of your questions answered to your satisfaction before making any decisions.  It is you, the parent, who will have to live for the rest of your  life with the consequences of choices that are made.  The doctor and the nurses get to go home at the end of the day and put “work” behind them.  So always proceed with the utmost respect for the power that you hold in your hands as the protector of your children.

Sometimes, it may be necessary to find someone who can help you through any difficulties you may experience.  The following are some things to consider in choosing a lactation professional and some resources for finding someone who is qualified.  If you are not happy with the person with whom you are working, please seek another source for information.  Many mothers give up on nursing because the person who was “helping” them with breastfeeding was not much help!

Things to consider:

• What is this person’s experience with medically compromised babies?

• Where is her information coming from?  (You have a right to know if it is personal experience, a good resource book or a discussion forum with other lactation professionals.  All of these tend to be good sources for information.)

• Has she successfully helped other mothers and babies in your particular situation?  (A negative answer is not necessarily reason to refuse to work with her.  You need to judge that for yourself.)

• What are the costs associated with her services?  Is the cost part of the hospital’s care, will insurance pay (many times it will) or are her services volunteered?

• What is her availability to you?  Will she be on call for emergencies?  Can you call her just to cry on a sympathetic shoulder?  Will she make home or hospital visits as needed?

• Does she have any connection with a mother’s support group?  This could be important for further support after the baby has been discharged.

Resources for finding appropriate help:

• La Leche League International- LLL has trained Leaders in every state in the United States as well as a number of other countries.  LLL Leaders are volunteers who have nursed their own babies and have met training and continuing education guidelines.  They offer monthly support meetings as well as phone counseling to pregnant and nursing mothers.  Home or hospital visits would be done at the discretion of the Leader.  There is no cost for their services, although membership in LLLI is available if desired.

  La Leche League International
  1400 N. Meacham Rd.
  Schaumburg, IL 60173-4048
  (847) 519-7730
  http://www.lalecheleague.org/
  1-800-LALECHE (US)

• International Lactation Consultant Association- ILCA has listings of certified lactation consultants in your area.  Not all certified LCs are listed with ILCA, but all listed LCs are board certified.  When looking for a certified LC, look for the initials IBCLC which stand for International Board Certified Lactation Consultant.  This guarantees that she has a minimum background of counseling hours and has passed a comprehensive test on a wide variety of breastfeeding situations and topics.

International Lactation Consultant Association
4101 Lake Boone Trail
Raleigh, NC 27607
Tel: 919-787-5181
Fax: 919-787-4916
http://www.erols.com/ilca
E-mail: ilca@erols.com

• Women’s, Infant’s and Children’s Program- WIC is a program that is administered by the state Department of Health.  They provide food supplements, nutritional counseling, and breastfeeding support for pregnant or lactating women and children up to the age of 5.  While not all WIC programs are as supportive of breastfeeding as they should be, many have IBCLCs on staff and/or breastfeeding Peer Counselors who are trained to assist mothers wishing to breastfeed.  They may also have breastpumps and other special supplies available as well as literature supportive of breastfeeding.  You can contact your local health department to find out what services they have available.  Many programs do not require that you be eligible for or on WIC to utilize their services.  This can be very helpful if you can not find a local LLL Leader and/or do not have the resources to pay for a private LC.

Remember:  if you are not comfortable with a course of action, the person you are working with, or the services provided, speak up.  She is there to HELP YOU, not to lecture you, give you ultimatums or get in your way.  Please do not let a bad experience with one person get in the way of seeking help elsewhere.  You and your baby deserve the best start possible, and that includes a successful breastfeeding relationship.

1. Pump or hand express frequently-- if the baby is in ICU, you may be able to draw the privacy curtain and stay at baby's bedside to do this-- ASK!
2. Save all milk-- It is better to have extra that you don't need than to need more than you have! Here is a quick reference:
   
   Colostrum- stable at 80.6-89.6 degrees F for 12-24 hours
   Mature Milk-
   
   59-60 degrees F - 24 hours
   66-71.6 degrees F - 10 hours
   79 degrees F - 4 to 8 hours
   Refrigerator - 5-8 days
   
3. If at all possible, put baby to breast for all feedings, even if baby won't nurse. The stimulation will be helpful for your pumping efforts as well as baby's future success.
4. Try to avoid rubber nipples-- supplemental feedings can be given using a cup, spoon, syringe, SNS, or NG tube. Your finger can be used to meet baby's additional sucking needs.
5. Eat and drink as much as possible and try to rest.
6. Find a support person and don't be afraid to ask for qualified help.
7. Remember, YOU are the one with the final say in all matters. Even though your baby is sick, he is still YOUR baby, and he needs you more than ever.

Articles and Resources for Breastfeeding