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Yesterday afternoon as I sat at my computer my
daughter Julie was in her room listening to her music as she always does.
Her room is directly above where I am sitting and since she plays her music
a little loud I can often hear what she is listening to, who she is talking
to (she often talks out loud as if someone is there) or singing along to.
Yesterday she was listening to the Stations of the Cross on CD. Julie
listens to all kinds of music and some of her stuff is religious material.
Julie loves Jesus like no one I have ever known. She talks about Him (and to
Him) a lot and has a deep empathy for what He went through on our behalf.
I've come to believe this is a very special gift He has given her. The
highlight of Julie’s week is Holy Mass. Julie is not independent and never
will be, but in matters of faith, she is soaring. She cannot remember how to
dress herself properly but Julie’s faith and love are virtues she practices
daily effortlessly. Julie is blind and moderately retarded. She is a joy to
be around as she is almost always happy and joyful. She functions at the
level of a 7 year old but spiritually, she is way beyond anyone I have ever
known or had personal experience with. She can't wait to get to heaven to
sing Jesus lullaby's and "make Him feel better". She tells me this at least
once a day. As I sat here yesterday she comes out of her room and hollers
down to me "Mom, who is Veronica?" Knowing what she was listening to, I told
her that Veronica was the woman who wiped the face of Jesus when he fell
while carrying the cross. She replied: "Awww, I'll make Him feel better Mom.
I'll snuggle Him when I get to heaven." I said "I know you will honey."
Twenty -two years ago today I was sitting on
my couch watching TV. I was almost 6 months pregnant. I felt a gush of fluid
so I went into the bathroom only to discover I was bleeding profusely. I
grabbed a small hand towel to stop the flow of blood and got into my car and
drove the short distance to a tennis court where my husband was playing.
From there we went straight to the hospital. My doctor said I had a small
polyp and that was causing the bleeding. He wanted me to stay there the
night and told me I could go home the following day. Later that night when I
had gone to the bathroom, I discovered something hanging out of me. It was
Julie's foot. From there a whirlwind of activity followed. The doctor was
called and I was hooked up to medicine that induces your labor. The doctor
made it clear from the beginning that Julie was "non-viable". When I asked
him what that meant he said she would not live, she was way too early. Bill
and I were devastated. After several hours with the medicine not working he
said he needed to get her out. Bill and I kept questioning if there wasn't
SOME chance of Julie surviving and we were told no. No special measures were
taken like there would have been if there was even a small chance she'd
live. Our doctor was consulting with experts from the University Of Iowa
Hospital and they all agreed, at 24 weeks gestation she didn't have a
chance.
I was awake while they tried to deliver Julie.
Because she was breech with one foot already out my doctor had a horrible
time getting her out. He ended up just yanking her out by the one foot. The
only sound in the room was Bill and I sobbing. They whisked her over to a
small side table and cleaned her up then let Bill and I see her. She was the
smallest baby I had ever seen...she weighed one pound 8 ounces. She was
perfectly formed just very tiny. She was also gasping for each breath. Once
again the doctor emphasized that Julie would not live and told us she didn't
have long. They gave her no oxygen or assistance whatsoever, it was just a
matter of time. A short time later I was taken to my room. There Bill and I
decided to call our families and we also called a priest to come and baptize
Julie. The priest was told to hurry. When he arrived he popped his head into
my room and asked me hurriedly what her name was. I paused because Bill and
I had not made any decisions much less talked about it very much. I blurted
out "Julie" and he left to go give her that sacrament.
Every now and then the doctor would come in
and tell us that Julie was still with us but not for much longer. One hour
passed, then 2, then 3......
He called the University again and they were all still in agreement to do
nothing, just let her pass. After 6 hours they decided to transfer her to
the other hospital where they had the team and facilities to handle
premature babies. Even though they were transferring her, we were still told
she would die. The University Hospital was two hours away.
The next 3 months of Julie's life were days
filled with pain and anguish for all of us. A roller coaster of emotions
when she made it through another day only to be followed by another crushing
setback. Julie experienced almost all the worst case scenario's that might
happen with a preemie. When my doctor yanked on Julie to get her out this
cause a brain bleed. They rate them 1 through 4 with 4 being the worst. This
bleeding into her brain was causing brain damage. Julie's bleed was rated 4.
To keep her head from swelling they went into the top of her head every day
with a needle and drained the fluid out. They tried to keep the area where
they went in to a quarter size as they knew they could also be causing
damage each time they did this. This went on for about a month when it
finally just stopped. Bill and I were often asked how far we wanted to go
with Julie. They wanted our permission to let her die. We wanted them to do
everything possible to save her. We were told that Julie would be nothing
but a vegetable. She would not talk or walk and would more than likely be
spastic. The picture of Julie's future was horrible but we still wanted them
do everything possible. I remember telling God that if only she can know
love and give love, that would be enough for me. Julie continued to get
every sickness a preemie can get. Once every hour they would prick her
fingers or heels to get blood to check the oxygen level in her blood. It
wasn't long before they didn't have to prick her anymore, they just had to
squeeze. Because Julie was on a ventilator you could not hear her cry. But
every time they did something painful to her she WOULD cry, you just
couldn't hear it. It was gut wrenching to see all the painful things done to
her on an hourly basis pretty much month after month. When Julie was two
months old she developed the worst kind of virus you can have in her colon.
Basically, her colon exploded and she was rushed to surgery. Bill and I were
told that very few preemies survive this. Again we were asked how far we
wanted them to go with her treatment. Before this surgery, we told them
again to do everything possible. When we saw her after the surgery we took
one look at her and knew this was the end. She was swollen to twice her size
and purple. They had to do a colonostomy on her so now she had a piece of
her colon protruding out of her stomach and her bodily excess flowed into a
bag attached to this colon. This was so the damaged part could rest. They
told us that even if Julie did survive this, the colonostomy was permanent.
The ventilator they had Julie on was not
breathing fast enough for her even on the highest setting so the nurses were
taking turns bagging her. It was seeing her at this point that Bill and I
both knew we could put her through no more of this. All these weeks the
hospital staff tried to convince Bill and I that Julie's life, with all that
had happened to her, had no value. Some suggested we let her die, some
suggested that if she did live, we put her in an institution. There was
never given to us even a glimmer of hope but we pushed ahead. Until this
last surgery. One look at her told us we had pushed her as far as we could.
Bill and I finally agreed with the doctors and told them that if Julie
should code again, to just let her go. We were told then that they could not
do this without a court order. What? It appears that a new law was put in
place where they had to give several measures of life-saving drugs first
before they could let her just pass. Bill and I we incredulous that we
finally agreed with them, and then they tell us we can't just let her go
peacefully. As it was however, the toll from this last surgery was
tremendous and they did not expect her to live through the night. So we
gathered our parents and a priest and had Last Rites given to Julie. We
stayed at her bedside talking to her and praying all night long. Only Julie
did not die. For the next week each day was like the one before. We hovered
waiting for her death and she kept on breathing. Somehow Julie managed once
again to pull out of that crisis. All in all, over the course of Julie's
hospital stay, we had Last Rites done on 3 separate occasions.
Over the next few months there were more
traumas for my baby. The oxygen she needed to keep her alive had detached
her retinas. Julie would also be blind. Her veins had all but shut down
from all the iv's so they were now using the ones in her head. At one point
they decided that putting a trach in Julie was the next best course of
action. Shortly after this surgery was done and Julie was back in ICU her
trach became clogged and they could not unclog it. This was where Julie
breathed from. She was hurried back into surgery but for over 5 minutes
Julie did not get enough oxygen and we were told more brain damaged had
occurred. From the brains scans done it was clear that Julie's brain had
suffered horribly. Her outlook was very bleak.
It took Julie 8 months in the hospital before
they thought she was ready to come home. We would be bringing her home with
a feeding tube, a trach, apnea monitors and oxygen. At 8 months old Julie
weighed 6 pounds. Eventually her colon was successfully reversed. When Julie
was two years old the trach was removed from her neck and surgery was done
to close the hole. Her need for oxygen was not longer necessary.
Today my baby is 22 years old. She came
running down the stairs this morning with a huge laugh and smile anxious to
open her presents. Gabby and I began singing Happy Birthday and she laughed
her head off. She was beside herself with glee because this is her special
day and we have lots of fun plans. I'm so thankful for this angel God gave
to us. What a special little girl! Happy Birthday, my love.
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