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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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"From Preemie Parenting to Parenting"
by
Kimberly A. Powell
Loss and joy; these are the emotions I felt when my premature daughter was
born and again at her three-year preemie follow-up visit. Shouldn't I be happy
that my daughter had caught-up with others of her actual age? Isn't it a relief
not to have to introduce her as a preemie to explain her small size or late
crawling and walking? While of course I am overjoyed that Senia is thriving and
has no lasting signs of her prematurity I am so affected by the preemie
experience that in some ways I feel loss. Closing the preemie chapter of our
lives is more difficult than I expected.
Senia was born at 28 weeks' gestation due to HELLP
syndrome. For some unknown reason my body began rejecting Senia and I
developed hemolysis, elevated liver enzymes, and low platelets (HELLP).
The moments before my daughter's birth were full of unbearable abdominal pain
from an expanding liver and incredible headache leading to seizures. The joy of
childbirth was taken from me: no labor, no anticipation, no being one of the
first to see my child, no cradling my baby in my arms once she had been taken
from her warm womb home.
After 36 hours on magnesium sulfate, unable to move a muscle in my body, I met
Senia for the first time. I was wheeled into the NICU on my hospital bed to meet
my 1 pound, 15 ounce daughter. I saw a baby smaller than any I had ever seen:
her head was the size of a baseball, my husband's wedding ring fit around her
bicep, her fingers and toes were long and skinny like a bird's claw, her ribs
were protected by nothing more than purple skin clinging to her bones. Once
internalizing her size, I could focus on how perfect she was. Though tiny, she
was a complete, perfect little girl.
As I sat in the NICU with Senia I remember wondering when it would ever be our
turn to leave. Senia went from being the only baby in the NICU to one of 13, and
finally one of three. Would it ever be our turn to go home? On April 21, 1997
after 49 days in the NICU, Senia came home at 4 pounds and 1 ounce. Despite
leaping out of bed at night to the sound of the apnea
monitor, checking Senia's breathing several times an hour, worrying about
infection, and missing the security of the NICU nurses, we were overjoyed to
have our baby home. I do not miss the long rides to the hospital, machines, or
waking up at night wishing my baby was in her room. So three years later at
Senia's final preemie follow-up visit why am I feeling loss?
We spent 49 days in a wonderful NICU surrounded by loving, caring professionals
and fellow preemie parents who all understood what it meant to have a premature
baby. We still encounter people who assume preemies are born early but otherwise
are like any other newborn. Senia's music teacher recently learned how premature
Senia was and said, "So did she have to stay in the hospital for a couple of
days?" As B. Lynn Shahan says in Living
Miracles: Stories of Hope from Parents of Premature Babies (St.
Martin's Press, April 2000) "Prematurity is a world you never know
exists unless life takes you there."
Being surrounded by people in the preemie world was comforting and validating.
Looking at Senia now, only family and friends know how hard she, the doctors and
nurses had to fight for her life. So part of the loss I feel is being part of a
group that understands the preemie experience.
The second source of loss was the recent formal end to the preemie chapter of
our lives. We have visited the NICU (75 miles from our home) several times
during the past three years. The three-year follow-up seemed in many ways like a
good-bye. It didn't seem that we belonged in the NICU anymore, which is
bittersweet. The day of Senia's three-year follow-up appointment we visited the
NICU and took gifts for the preemies in the unit, as we do every year. When we
walked in we found many new nurses, only two that we knew.
Shortly after we arrived a mother walked in with her preemie. All the nurses
knew him and flocked to him, leaving us behind. We left quietly because our time
was obviously over. My husband and I felt both sad and calmed. It was like a
graduation in that we were happy to leave and go forward, but had many important
memories and emotions that we weren't ready to leave behind.
The final source of loss is that of preemie milestones. The past three years
have been full of milestones: getting off the ventilator, reaching birth weight,
getting off oxygen, the original due date, returning the apnea
monitor, six month and one year follow-ups, crawling, pulling up, walking, and
the final three-year follow-up. All of these preemie milestones are in the past.
No longer am I parenting a preemie, I'm parenting a child.
I look back on the preemie experience as a special time of watching Senia
develop. Though I would not choose to have a child early, I had the unique
opportunity to watch Senia develop much as she would have in the womb. I also
met some wonderful nurses and doctors, became part of a supportive preemie
community and rejoiced at every milestone my little miracle achieved. I do feel
a sense of loss as I close the preemie chapter of my life. But stronger are the
special memories, gratitude for my living miracle, and joy that I am fortunate
enough to move to the parenting chapters of my life.
Kimberly A. Powell is a professor of communication at Luther College. She
recently co-edited/co-authored Living
Miracles: Stories of Hope from Parents of Premature Babies (St.
Martins Press, April 2000).
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