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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
Riding the Roller Coaster,
Dealing with Setbacks
by Kerry Bone
"Life and love is like a roller
coaster. It has its ups and downs. When you are holding on at all costs and
screaming your head off. And when it is all over you feel weak in the knees and
like you are going to throw up.
But the first thing you think is:
I HAVE GOT TO DO THAT AGAIN!"
In the NICU, parents quickly learn that
babies have good days and bad days, just like adults do. As your baby
progresses, it is almost a certainty that they will experience a few, if not
many, of those "bad days", which are often termed
"setbacks".
It can be wonderful when your baby is enjoying good days. You may feel as if
things are finally turning for the better. You may feel that it is
"safe" to bond and love your baby. And then a you hit a dip...
The bad days can be especially sad and scary to you as a parent. The journey
towards home for a hospitalized baby is many times compared to riding a roller
coaster. Some days the highs are very high, but other days the dips are so low.
It can be very difficult to watch your baby endure setbacks in their progress.
It can be disheartening and depressing knowing that the setback is one more
obstacle to overcome before they can join you at home. Setbacks can give you
information that makes you worry even more about the babies future. They can
force you to come to terms with a disability that might never be cured. Setbacks
can make you begin to doubt that your baby will ever be totally healthy. They
can even darken over your joyous times much like a black cloud. They can cause
you to draw back from your baby, in fear that something terribly awful will
happen. They can make you doubt that you should love your baby.
Nearly all premature babies endure setbacks, and most babies have several
setbacks during their stay. Most of these setbacks are normal, to be expected,
and a part of their growth. The doctors and nurses will help you understand what
is happening and why. The best defense against setbacks is education. If you
understand that the setback is a normal part of preemie development, they can be
less frightening. You will be better prepared to expect the setback to occur -
you may feel a little more in control. If you can understand that many setbacks
are not life- threatening, you can regain some sense of security and safety.
Sometimes, though, the setback your baby meets is life-threatening. Doctors are
very good at explaining which type of setback is unexpected and poses a special
challenges to their health. Here again, education can be your best defense. The
doctors can give you likely alternatives - and often share some statistics about
what course your baby may take. Although there is little "preparation"
that a parent can make when faced with the possibility of losing a child, it can
help to know all the options of what could happen.
While there is nothing that does eliminate the fear, the loss of control, and
hopelessness, there is support you can receive at these times. Other parents who
have had children battle the same setback can talk with you. Doctors and nurses
can be incredible support for you during this time, too. Social workers and
chaplains are also wonderful.
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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