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 an 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 is 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 adn 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. Thi sis 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.
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