This information is a guideline, a starting point for discussion with your child's caregivers. Because each child's condition and situation is unique, anything affecting the child's overall well-being should be agreed upon by all involved. It must be stressed that, ultimately, the parents have the final say on all aspects of their child's care.

Pregnancy is generally a time of anticipating wonderful things to come. Even when the pregnancy was unexpected, most mothers are eager to greet and come to know their new child by the time of the birth. The thought that there might be a problem occurs to all of us at one time or another; but it is usually dismissed quickly as unfounded.

Sometimes it is apparent during the pregnancy that something is amiss, but more often it is at delivery or within a few days after that problems suddenly show up. An older baby may suddenly become very ill and require hospitalization.

As unfortunate as these things are, it is more unfortunate still that many mothers, overwhelmed by their child's condition, the medical staff and the hospital setting itself, conclude that breastfeeding is no longer an option. Breastfeeding may be abandoned or never initiated.

Following are a few guidelines that may help breastfeeding remain a viable option.

• If your baby is unable to nurse for a time, the main priority in regards to nursing is to establish or maintain a milk supply. Pumping as often as possible is advisable. The reality of pumping is that it is likely to take a half-hour or so for each session. Pumping, labeling the containers and washing your equipment is time consuming. If your child has a private room, you may be able to keep a pump with you so that you don't have to go to a pumping station. Hand expression can be invaluable in this situation because of the minimum of equipment, but it's a learned art. If your child is in an open ward or ICU, you may be able to draw the privacy curtain and either hand express or use a battery operated pump without having to leave your child. Obtaining the cooperation of your child's nurses is often as simple as asking.



• Be sure to check on the hospital's storage policies. They vary from hospital to hospital and may include special storage containers or a time limit on how long milk can be stored before use.



• Do not ever discard expressed milk. When your child is unable to receive milk because of intubation (being on a breathing machine) or other problems, it may seem ridiculous to be storing ounces and ounces of milk that can't be used yet. When the baby is able to receive your milk, it can disappear at an amazing rate.

  The more milk you have in reserve, the less pressured you'll feel if your baby is unable to nurse well as he recovers. Often, as they slowly regain their strength, babies will be tube-fed through their nose (NG tube) to conserve energy needed for healing. Pouring two ounces every two or three hours down that tube can add up very quickly.




• Once you can hold and cuddle your baby, put him to the breast even if he's too weak to nurse. The stimulation to the breast will aid in your pumping efforts and it will help your baby to learn or relearn that not all touching is bad. Some babies have an aversion to anything touching their face or mouth after being intubated for a time. You may be able to help prevent this by allowing him the chance to suck on your finger even while intubated. In any case, do not force the issue if the baby doesn't want to nuzzle the nipple. You may need to start slowly, perhaps letting him rest his head on your chest with your shirt down and gradually working up to more skin contact until his face is lying on your chest with your shirt up. Eventually he'll get the idea.



• This always seems to be redundant advice, but it is important and bears repeating. Try to rest and eat. When you're worried about your sick baby you may not feel like eating or be unable to sleep for more than an hour or two at a time. Inadequate rest and nutrition may interfere with your milk supply. Don't expect perfection. Sleep as much as possible and try to eat at least two small meals a day. On the ward it will be possible to keep a snack or nutritious drink nearby. In ICU you may be able to keep at least a cup of water handy. It depends on ICU policy and also the nurse on duty, but it's worth asking.



• Try to avoid rubber nipples, bottles or pacifiers. A baby that is unable to nurse for a while may get even more confused if given rubber nipples to suck on. Drinking from a bottle is more physiologically stressful than nursing and requires a whole different set of actions. Sometimes there may be a hospital policy involved. In the cardiac ICU we were in, it was policy that a baby be able to suck from a bottle, lying down, before being transferred to the ward. The theory was that if the baby could accomplish such a physically stressful feat without going into cardiac arrest, it was probably safe to move him into a less supervised setting. I finally had to go to the surgeon to request that this policy be waived in my daughter's case. He agreed and that was the end of it, but no one under him had the authority to agree to my request. You can start by asking a nurse, but always take your requests to the top of the command chain if you are not getting the answer you want. (See Appendix B)

Once your baby is physically able to nurse, different issues come into the picture.

Your baby may have some difficulties with the act of nursing. This may be due to being intubated, an aversion to being touched around the face or mouth, congestion, weakness or congenital abnormalities of the mouth. Some problems, such as weakness or congestion, may just take some time to resolve. A very weak baby will likely be tube-fed to conserve energy, and in that case nutrition will not be the main concern. Other problems may warrant a consultation with the lactation consultant on staff or a local La Leche League Leader. She will be able to offer concrete suggestions, perform an evaluation, or refer you to an appropriate therapist and/or other resources.

• You will hear more about calories during this time than you have heard throughout your entire life unless you're a weight loss counselor. Breastmilk is calculated as having 20 calories per ounce. High calorie formulas, containing 24-27 calories per ounce, are frequently advised for use in compromised babies. Human Milk Fortifier (HMF), developed for use with premature infants, is often used as a "filler" when an infant is being tube-fed expressed breastmilk. HMF is cow's milk based and as such may cause an allergic reaction. A full-term baby on HMF may also need to be monitored for electrolyte imbalances because they don't have the same nutritional deficiencies as preemies.

  Another commonly used filler is Polycose. It is basically a simple carbohydrate, but may also cause allergic reactions. Various studies have concluded that the caloric content of human milk varies from mother to mother and may also differ in a single mother through the course of the day. An analysis of your milk to determine how many calories per ounce your baby is receiving may be an option.




• If your baby won't nurse and is being tube-fed, try to avoid giving medications by mouth. Oral medication can usually be put down the tube. This avoids any additional negative oral stimulation and may make efforts to breastfeed go a little more smoothly.



• Try to find at least one contact person who is supportive of your efforts to breastfeed. The isolation of being in the hospital with a sick baby is very stressful. Trying to nurse your baby without anyone to encourage you during this time is doubly difficult. The hospital staff are often so caught up with calories and "ins" (milliliters taken in each day), not to mention the dreaded daily weight check, that breastfeeding may be viewed as an inconvenience. It is much more difficult to measure.

  Someone who can pat you on the back when you're discouraged and celebrate with you when you've made progress, no matter how little, can be invaluable. If you have no close friends who would fit the bill, contact a local La Leche League Leader.




• Finally, try not to get too discouraged. There are some babies who will never physically be able to nurse. They are the exception rather than the rule. Most babies, with patience and perseverance, will eventually be able to reap the many benefits of breastfeeding.

I know how difficult it is to breastfeed in adverse circumstances. My own daughter would not have been breastfed were it not for my background as a former La Leche League Leader. Even with my determination, there were many obstacles to overcome. I am thankful for the friends who were able to support me through the six weeks we spent at the hospital. My daughter did not successfully nurse until after she was discharged at six weeks of age. At two months of age she still had not regained her birthweight! Two months after that, however, she was actually plump.

She is frequently ill and has had pneumonia a number of times. Many of the pediatric nurses at her hospital know us on sight. Yet, when I talk with other parents of children with her problems, I realize how very lucky we've been.

I am sure that breastfeeding has prevented far worse complications than the ones we deal with. So while no one can promise that your child will never get sick again if you breastfeed, you can be sure that the benefits will still be tremendous.

APPENDIX A

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-
a 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-
describes 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-
the charge nurse is the nurse on duty who is the supervisor of all other nurses in the same unit. Also "head nurse".

chart-
the chart is 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-
the 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-
the 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 and 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-
refers to 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 or Human Milk Fortifier-
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 type of 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-
refers to 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-
she is 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 in 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-
a doctor who specializes in the care of newborn babies.

ng tube-
describes 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-
the abbreviation for oxygen.

OT-
the 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-
describes 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-
term refers to the place in an IV or tube that is used to put in medications or food

pulse-ox-
a special monitor that uses a glowing band aid (that's what it looks like) to monitor the heart rate 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-
stands for "respiratory therapist". These are the people who adjust oxygen levels, monitor ventilators, administer breathing treatments and do "cpt".

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

SNS-
stands for "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-
describes 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 is then used to suck out the mucous.

tech-
term that refers to 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.

APPENDIX B

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 who 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 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.

  Breastfeeding Bible Study (Ed. Note: This link leads outside Parentingweb to Cyndi's website. She has outlined some bible passages for study that cast insight on breastfeeding. If you visit this page, you can use your browser back button to return to Parentingweb)

• 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 child.

APPENDIX C

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 (in the 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.

Quick Checklist

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 now more than ever.

If you have any questions or comments, please email: CyndiMom23@aol.com

Written by Cyndi Egbert
Cyndi's Breastfeeding Page
Cyndi's Birth and Parenting Resources
mail to: CyndiMom23@aol.com

©1998
All rights reserved. This information is protected under copyright laws.

This document may be reformatted and reproduced in whole or in part as long as: All credit is given to Cyndi Egbert as the author with inclusion of the email address: CyndiMom23@aol.com No content is changed or altered in any way. No financial gain is realized as the result of use of this text. Disclaimer and copyright information is included with whatever portion is being reproduced.

Disclaimer: None of the information contained herein is meant to provide medical or legal advice. These are merely suggestions. All decisions should be discussed with your health care provider.

Because preemies have very specific issues, I have not addressed their special needs in this context. There is information available from La Leche League International on the special situation of breastfeeding a preemie.