I am 37 years old, and I have a 10
year old son. In 1991, I noted a
trickle of fluid down my leg late one
night in my 4th month of pregnancy. I
immediately thought I was going to lose
the pregnancy, but over the phone I was
told to come to the hospital because
sometimes these "seal up." The
ultrasound showed a healthy, good sized
baby and a low normal level of amniotic
fluid. The OB did mention that inducing
labor at that time was an option.
Others stated that some families with
other children "did not have time for
this." I assumed that they were
refering to bedrest, and knew that I was
willing to do whatever it would take for
the baby to do well. At that time I
showed no signs of infection, and only
rare contractions. After three weeks of
daily worry I began to notice that my
back aches were coming more frequently.
Frequent checks had shown no cervical
dilitation to that date, so no one
believed me when I said I thought the
baby was coming.
Suddenly, out popped a tiny foot and
they started taking me seriously. He was
born at one of the finest hospitals in
the city. All measures were taken at his
birth to ensure his survival. Surfactant
was administered before his first
breath.
In fact, animal derived form was
utilized despite being still in the FDA
approval stage. He fought for life,
receiving many transfusions, remaining
on the ventilator until 5 weeks.
He extubated himself and began to nurse
that night. We saw his face for the
first time then without any tubes. We
thought the rest of the course would be
"feed and grow", as they call it.
Except for the apnea, for which he
received theophylline treatment, it
seemed to be the case.
We took home a seven pound baby nursing
without supplementation. No monitors
were connected. I sat awake and watched
him sleep whenever he wasn't nursing.
Except for profound sleep deprivation,
things appeared somewhat back to normal.
We decided when he was 8 months to
reward the families efforts with a trip
to Disney. This led to the first of a
long series of hospitaliztions. Our life
has never been the same.
The asthma that threated his life
multiple times went on for years. When
he was noted not to progress in his
physical development we eventually
learned of his cerebral palsy. He has
undergone a multitude of surgeries an
orthpedic manipulations. His life goes
on around a barrage of therapies. He is
a beautiful, emotionally strong child
who now walks unassisted. He attends a
regular school and holds the promise of
a wonderful future. He occasionally
exclaims that we don't know what it is
like. But we do. What has truly been
destroyed is my marriage. My husband
lives in a world where all things are
fair and there is someone to blame for
all things bad. Furthermore, there is
no God. There is something I should
have known about the way things would be
that I deliberatly kept from him. I am
punished everyday. Not by the challenges
put forth on my child, but by the
paranoid and hateful accusations of
my husband. I cannot continue under
these circumstances. I don't know what
to do, but I must thik of something. I
loved the man I married but he died 10
years ago. I don't think I can forgive
the abuse he has directed toward me (and
on occasion or older child). As you
can see, I could certainly write a book
of these experiences, so I will stop for
now. I will read the writings of the
rest of you to help me in this quest.
More to come...
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