Repost: BF FAQ: request for input (long)
JC Diamond (jdiamond@nic.com)
Mon, 11 Mar 1996 13:33:03 -0500
This is a repost. So many new people have signed on to the list since I
posted this that I thought I would send it again to get more people involved.
Please note: this was originally posted in misc.kids and at
Parentsplace.com ont he preemie BBS. I would love participation from anyone
on PeemieL who wants to be a part.
WHY A "NURSING THE PREEMIE/NICU BABY FAQ?"
My daughter Kate was born nine weeks premature. She weighed 2 pounds 7 ounces
and was in the hospital for 53 days. I tried very hard to supply her with
breastmilk, but I had a very difficult B.F. experience. For a long time I
felt very
inadequate had not been able to carry her to term, and then I was having
problems providing enough milk for her. In speaking with other Moms of
premature babies I found I was far from alone. There were so many questions
we all seemed to have about pumping, about supply, about how to breastfeed and
supply breastmilk to our children.
Almost all the breastfeeding literature is mainly geared towards Moms of
full-termers, and most of the pumping information is focused on women who have
already built up a supply (while it is possible to build up a supply through
exclusive pumping, it is very difficult, and most moms experience a decrease
after about 6 weeks). The information provided on premature babies in most
breastfeeding books is lackluster at best. Very few of the books mention in
any detail the stress and the supply problems that one might encounter. The
typical book just said "pump and when the baby comes home you'll have enough
milk". Those books that did have sections on preemies only focus on
"successes" and that is highly subjective. I was never able to actually nurse
full time, and I never had a great supply, but I now consider myself
successful. And I know a lot of Moms just like me.
So I decided to put together an FAQ on the B.F. experiences of Moms with
premature/NICU babies. Because I found it very difficult to find good
information. And most important of all, because every one of the preemie
Moms I've met and discussed this with, regardless of their success level,
agree that more info should be available to those of us in this situation.
NOTE: Although my primary focus is on premature babies, I am aware that it
is not only premature babies that are in the NICU and whose mothers are in
need of support. I welcome participation from any mother who had a baby in
the special care unit.
BACKGROUND TO THE FAQ:
The goal of this FAQ is to give Moms who have preemies some support and an
idea of what others experienced. As I have said, I know Moms who were
successful to all degrees and some who chose not to pursue B.F. at all.
EVERYBODY agreed that more info should be available. Many of us were given
bad advice, and in some cases this doomed the B.F. effort, or upset the Mom
needlessly (i.e. when you pump "they" tell you to look at a picture
of the baby to relax..many of us did not relax when we looked at the baby with
tubes, respirator, etc..and then we felt guilty)
This FAQ will focus primarily on support of the Mom especially while the baby
is still in the NICU but it is not limited to that time frame. Support is
still required when the baby comes home..especially if, as in many cases, the
baby cannot B.F. at all feeds and must be given expressed milk.
So this FAQ will be presented as: this is what other moms experienced This is
what worked/didn't work for them. This is how they felt. Take from it what
you need or want. This FAQ is not intended to be technical manual on how to
pump, or a treatise on the benefits of breastmilk for these kids, although
some of that info will undoubtedly be here by default.
ABOUT THE
SURVEY---------------------------------------------------------------------
The FAQ will be divided into two sections:
I . General information about breastfeeding premature/NICU babies plus
information about other resources both on-line and off-line.
II . Personal stories and responses to the survey. The answers will be grouped
by question group. This will enable readers to quickly find input on an area
that is of concern to them.
*************************************************************************P
Please submit your completed survey to: jdiamond@nic.com
I would appreciate it if you would EXCLUDE the above sections with your
response..
THE
SURVEY------------------------------------------------------------------------
Your name:
Email address: (please provide this info, even if you wish to contribute
anonymously so that I may contact you if I have any questions)
Will you allow your name to be used in citations? :
Would you like to have your Email included in the FAQ so that you can be
listed as a reference (so that someone having a problem can contact you for
support)?:
PART 1
Are there any resources you found to be particularly useful that you would
recommend to other mothers who are in the same situation?
PART 2
Feel free to include anything you think someone else might find helpful.
Think about the questions you had at the time. I have included a series of
questions...but please do not feel limited by them. If you did not pursue
breastfeeding, or did for a short period of time but found it impossible to
do, please give your input as well.
1. It would be helpful to hear a little bit about what happened. How many
weeks gestation was the baby? How did the birth go? How did you feel about
the situation?
2. How was your desire to nurse handled by the hospital staff? Were you able
to pump right away? Was there a nurse or lactation counselor who was
knowledgeable about breastfeeding premature babies? Were you instructed in
how to store and transport your milk?
3. How were you able to handle pumping during the baby's stay in the
hospital. Were you able to pump in the hospital in a special "Mother's room"?
Did you rent a pump at home? What kind of pump worked best for you?
4. Was it difficult to pump? Did you have problems with quantity? What kind
of volume were you able to pump? Did you find yourself becoming obsessed with
the qty you produced? Did you try anything to increase your supply?
5. How did you feel about having to pump? Did you find it hard to relax?
How did you handle the stress of the situation? How often were you able to
pump? Did you sleep through the night, or wake to pump?
6. When were you able to nurse the baby for the first time? How was this
handled by the staff? Were you given encouragement and help with positioning
and latch-on? Were you allowed to help with earlier feedings (give the bottle
or hold the NG tube)? Were you allowed to nurse somewhere private or were you
in the NICU? Did you find it difficult to nurse in the hospital environment?
Did the NICU have a "kangaroo care" program?
7. Was it necessary to supplement your milk with either formula or a
breastmilk fortifier? How was this explained to you? How did you feel about
this?
8. When the baby came home, were you able to fully breastfeed immediately?
If not, how did you handle scheduling the feedings and the pumping sessions?
How did you feel about this?
9. Did you continue to get support from a lactation counselor after the baby
came home? Was the counselor sensitive to your needs? Did you seek out
additional sources of assistance?
10. Did you feed supplemental feedings by bottle or SNS (supplemental nursing
system)? How did this work for you?
11. Was weight gain an issue for your baby? Did this have an impact on your
breastfeeding decisions? Did you work at trying to increase your milk supply
once you were actually nursing? What worked for you? What didn't?
12. Were you given any particularly useful advice or support that you felt
really made a difference in how you felt about the situation?
13. Were you given any bad advice or recommendations that either were
inappropriate for your situation or were just not right for you? Is there
anything you wish now had been handled differently?
14. Was your family supportive of your feeding decisions? Was your
pediatrician? How did this support/lack of supprt effect you? Was this the
case both in the hospital and once you were home?
15. If you have already been through this, is there any insight you would add
to someone going through it now? What advice do you wish you'd had? How do
you feel about the experience you had? Do you feel as though your
breastfeeding efforts were successful? Do you feel you need to justify your
decisions?
Finally, please let me know if you feel there is any topic I have missed and
that should be included in the FAQ.
Thank you very much for your input and for your support.
Justine C. Diamond.