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Preemie Books
Living Miracles: Stories of Hope from Parents of Premature Babies
by Kimberly Powell &
Kim Wilson
Life on the Reflux Roller Coaster
by Roni Maclean
The
Pregnancy Bed Rest Book by Amy E Tracy, Richard H Schwarz
The
Preemie Parents Companion: The Essential Guide to Caring for Your Premature Baby
in the Hospital, at Home, and Through the First Years by Susan L Madden M.S,
William Sears MD, Jane E Stewart MD
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Reprinted with permission from Kerry
Bone.
What Every Parent Needs to Know: Asking Questions
by Kerry Bone
Nothing is too small to
know and nothing too big to attempt.
-William Vann Horne
How Many Am I Allowed?
While your baby is in the NICU, ask as many questions as often as you need
to understand what it happening. Your baby’s nurses can be the best people to
ask, as they often spend the most hands on time with your baby. If they do not
know the answer, or if you are not comfortable with their answer, request to
have a practitioner, doctor or specialist find an answer. Find someone to
answer your question as quickly as possible. When you are forced to wait for an
answer, you can become more frightened of what is happening. This means that if
you have a question and it is 3 am, it is by all means acceptable to insist on
finding someone who can answer your question then. Afterall, this is YOUR BABY.
Getting the Answers
It may be difficult to realize that not all questions can be answered, that some
questions have no clear answers, and that some answers to questions may not be
what you intended to hear. Nevertheless, knowledge is power, and you are
entitled to have power in decisions. You are entitled to know what is happening
with your baby's life, even if the answers are only "guesstimates" of
what could happen. When the answers to your questions are not what you desired,
they can help move you towards adjustment. Once you know the answers (even
though they weren't the "right" ones), you can educate yourself on
other options (example - treatment plans, long-term assistance).
What Do I Really Want to Know?
When you begin to list your questions, it is wise to spend some time deciding
just how much detail you want to know about your baby’s care. Some parents
want to know every test result, every monitor and vent setting, all possible
complications that could occur, while others are satisfied with the general
information. Choosing either one does not in any way reflect negatively on your
parenting skills or your amount of love for your baby. It merely reflects how
much information you can realistically absorb and digest. This amount can change
over the course of your baby's stay.
In the beginning, you may not feel physically or emotionally capable to cope
with all the overwhelming information or you may want to learn all there is to
know. As you begin to feel more comfortable with what is happening and your baby
progresses, you may not feel the need to ask as many questions. Always ask as
many or as few questions as you need answered at any point during your baby's
stay and expect this level to vary over time.
As you develop your list, it helps to know some answers comfort some parents,
but scares others. Only you can be the best judge of your need for information.
Talking with your nurses about this matter can help you decide what amount of
information is best for you to handle. You may decide that some information is
best handled by a spouse or family member, who can then determine how much to
involve you, depending on the type and severity of the information. This too is
ok!
What If Questions...
At some point, you may feel a need to ask “what if” questions, in hopes of
preparing you for "the worst". "What if" questions might
center on setbacks, or disabilities, or survival, topics none of us are ever
ready to hear about our children. Before you ask, it helps to realize that not
all “what if” situations do actually arise, but by having prepared for them
can sometimes ease your mind if in fact that situation does occur.
Above all, try to remember that regardless of what answers are provided to you,
fortunately and unfortunately, no one has the ability to predict the future.
Thus, answers to "what if" questions are never set in stone.
When to Ask Questions
There is no “best” time to ask a question. The nurses try to make it as easy
as possible to spend time answering your questions. Please realize at certain
times it may be difficult for them to take the time to answer your questions,
and you may be asked to wait until later. Some of these times are: when shift
change is about to occur, when doctor’s orders have just been handed out and
need to be implemented and charted, when your nurse is involved with another
infant or parent, when another infant is experiencing some difficulties, or when
a specialist has come for treatment or consultation. Do not feel as if the nurse
has “brushed you aside” during these times - they should always find time to
come back and talk with you. If they forget or get continually sidetracked with
other duties, ask them to schedule a time to talk with you. Or ask for someone
else to come and assist you.
Keep a Journal of Questions
It is a wise idea to keep track of information and questions in a notebook or
journal. You can write down whom you talk with, what is discussed, and any
questions you have regarding the information. This will help you to review the
information with a spouse or family member later, as well as helping to make the
information clearer to you as you re-read it later.
Be sure to write down all questions as they come to you, no matter how trivial
they may seem. (Keeping the journal at your bedside and in the car is a good
idea, you never know when a question will hit you!)
It should be the NICU's goal to help you understand everything that is happening
with your baby and find answers to all of your questions, no matter how silly
the question. You may find yourself asking some questions over and over. This is
OK! It takes many times of hearing new and unusual information before the person
can fully digest and understand it. Remember, ask questions as many times as you
need to feel comfortable and understand what is happening with your baby.
The staff takes care of preemies for a living, and is well versed in the
language of NICU. This language and territory is foreign to you (at least at
first) and you need time to absorb the massive amount of information that is
being given to you. It is perfectly acceptable to have lots and lots of
questions and to require many of the answers be repeated. Remember - the only
stupid question is the one not asked.
Copyright © 2000 Kerry Bone
Kerry
Bone is mom to two preemies; Tyler, born at 31 weeks in October 96, and Kaitlyn,
born at 35 weeks in January 2000. She writes about preemie issues and leads
parent groups at local hospitals when there is free time. She is currently
working with the March of Dimes to develop a NICU parent packet.
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