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Since telling
our story we have become proud parents to Caden Nathaniel Grabow
on 12/31/02 and Noah Riley Grabow on 11/18/03. Both Caden and Noah
were tested for TFP via Supplemental Newborn Screening after birth.
Caden does not have TFP, but he might be a carrier
for his father’s mutation. However, he does have Multi-Cystic
Dysplastic Kidney Disease. On September 23, 2003 his left
kidney was removed. Caden is in great health. He’s a normal
eleven-month-old who enjoys talking, crawling, walking and most
importantly getting into everything. Noah on the other hand
tested positive for TFP. He was placed on a protocol for TFP.
He is gaining weight and maintaining his blood sugars. He will be
released from the hospital sometime this week after a one-month
stay in the NICU. We are hopeful that we will be able to continue
to raise him here on Earth. I have to admit that my days
are shadowed by the fear of the unknown. After Caleb passed
away I realized for the first time how precious life is and how
short it can be. We have had to learn to make changes in our life.
We can no longer plan things. We have to take things day
by day. We never know what may or may not happen. I keep
being told that Noah is doing great but not to forget that things
can change in an instant. All that we can do is love and care for
our children and hope that we are doing the job right. I am so scared
of failure but when it comes to being a caregiver and parent to
our children I cannot afford to fail especially in Noah’s
case. It would cost him his life. I just thank God everyday for
my family and FODSupport. I know that I am not alone. I have somewhere
to turn when I have questions…and a place where I can talk
about my fears. Thank you for being there for us.
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Our
precious son Noah passed away after a long fight for life on March
23, 2004 at 10:21 pm. Noah was admitted to Wolfson Children's
Hospital of Jacksonville Florida on February 13th, 2004. That Friday
started out as a normal day. My husband William and I got the boys
ready to go to the local store. Before we left I fed Noah, it was
around 6:30 am. Noah had a Metabolic Disorder called Tri-Functional
Protein Deficiency. It was very important for us to feed
him every three hours no matter what. During that feeding Noah was
his normal self. He took most of his feeding and he was very alert.
He seemed fine during our trip to the store. As I was placing Noah
and his car seat back into the car that is when I noticed his skin
coloring. He was very pale and his skin was blotchy and very cold
to the touch. And he started moaning while his eyes fluttered. I
knew something was wrong.
The past
two previous weeks we had two false alarms with Noah. My
first son Caleb died from TFP at the age of fourteen
days. He went undiagnosed so I have never raised a TFP
child before. Our geneticist told me to bring Noah in if I felt
that he was acting differently or if I felt he was becoming ill.
So we did have two previous trips to the doctors but everything
turned out to be okay. Well that day there was something wrong.
We rushed Noah to the hospital. On our way there I did call our
doctor to inform him that we were taking Noah to the hospital. He
then in turn notified the hospital of Noah's case and what the protocol
was for his disorder.
William dropped
Noah and I off at the ER entrance. William had to take our other
son, Caden, to the babysitter. We knew we would be at the hospital
for a long time. As soon as I walked in I told the staff
who I was and what was going on. I also informed them that
our doctor called them to tell them that we were on our way. I
also handed them a copy of the protocol letter. I was ignored. I
was told to sign in and please take a seat. Well I didn't take a
seat. I stood in front of the desk stomping my foot. Finally
after a few minutes the lady behind the desk took a look at Noah.
She rushed us in back. Once we were in the actual ER Noah's
breathing and heart stopped. I watched them work on Noah for almost
an hour before he was stable enough to be moved to the PICU floor.
My son went through hell that day. He survived! It was not
his time to go.
Noah
hung on for five and a half weeks. I was so blessed to have witnessed
his first real smile a few days before he passed away.
During the finally weeks of Noah's life William and I were on an
emotional roller coaster ride. We classified our days as a good
or bad day for Noah. We truly felt that Noah was going to
pull through. When I would visit Noah I would often read
healing scriptures to him and play CD's for him. Noah loved listening
to music. During this time I read the book Charlotte's Web to him.
I had an eerie feeling that once I finished the book Noah would
pass away. So for a few days there I didn't read it to him. Instead
I read from the Bible. But three days before he passed away I started
reading it to him again. I finished it the day before he passed
away. I will cherish that book forever.
On his last
day of life he was started on a new study/protocol. We were hopeful
that it would help with his heart function. We will never
know if it would have worked. Noah's heart was
too weak from a second crisis that he had during his second week
in the hospital. He ended up with cardiomyopathy. Noah's
little body couldn't take anymore. During his final week of life
he ended up with two chest tubes, one upper lobe lung collapse and
a bacterial infection.
When I arrived
that night, I greeted Noah with a kiss on his forehead. That is
when I noticed how pale and cold he was. He reminded me of Caleb
the day he passed away. For the first hour of my visit he didn't
open his eyes like he usually would once he heard my voice. I sat
down in the chair next to his crib and started praying and reading
healing scriptures while I played a CD with healing scriptures.
Around 9:30 pm my friend Angel and her husband Eddie arrived. I
just met Angel the week before and I met Eddie that night. All
three of us went to Noah's beside. Once there, Noah opened his eyes
and squeezed mine and Angel's fingers for about ten minutes.
Then Noah closed his eyes and all the alarms went off. The
staff worked on Noah for twenty minutes. They were about to take
extreme measures. That is when I found my voice and told
them to let Noah be with God and his big brother Caleb. My son was
gone the moment he closed his eyes.
William,
Caden, and our close friends soon arrived. We all spent
the next four hours holding and loving Noah. We have all learned
so much from Noah. Noah has personally given me so much.
I now have closure with Caleb's passing...I was
haunted by his passing for two and a half years. I was always thinking
what if he would have been tested at birth...what if we would have
placed him on a low fat diet. I now know that nothing could
have been done for him. We did everything medically for
Noah. The standard protocol does not work for the type of TFP my
sons had. However it did prolong Noah's life for four months. For
that I am grateful. We were able to have Noah at home with
us for two months. I will cherish those four months forever. I love
and miss you BIGGIE much Noah.
Love, Mommy
Noah's
Memorial Website
Caleb's
Memorial Website
Mommy to Caleb Patrick 9/14/01- 9/27/01 ~i~ TFP C527G
and Caden Nathaniel 12-31-02 Multicystic Dysplastic Kidney Disease
and Noah Riley 11/18/03-3/23/04 ~i~ TFP C527G
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