My story actually began when my mom and dad got married, way
back in 1993. They were married on July 3rd, because it is my
great-grandparents wedding anniversary. That year, they celebrated their
55th anniversary. Mom and dad thought they would wait awhile to have kids,
but God had other plans. Six months later, they found out they were
pregnant with my big sister, Rachael. She was born on September 22,
1994. She's a terrific big sister and loves it when I smile at
her. Mom has always loved babies and knew that one would not be
enough! Before they had more babies though, mom said she wanted a new
house so there would be room for more kids. God gave us a perfect house
and mom, dad and Rachael moved in June of 1996. It took about 6 months of
trying, to get pregnant again, but then my sister Larissa was on her way.
She was born on August 11, 1997. Mom was a little worried during her
pregnancy with Larissa because she had two friends who had miscarried their
babies. Mom cried tears of relief when Larissa was born, safe and
sound. The summer of 1999, mom and dad were trying to decide if they
should have another baby. They prayed about it and said, whatever you say,
God, would be fine. BOOM! It only took the first month and I was on
my way.
In October, mom was feeling rather tired and remarked to daddy, "Either I
am pregnant or seriously ill!" So mom went to the doctor for a lab
test and the results were positive! On October 25,1999, mom and dad knew I
was on my way. From the beginning, mom knew something was different about
this pregnancy. She was concerned because she had gotten pregnant so
quickly and was worried about me and if I was okay. At 9 weeks, her OB did
an ultrasound and they got to see my strong heartbeat. At 12 weeks, they
saw me again, doing a little dance. My sisters got to see me then
too. I was still very small, but moving around and moving my arms and
legs. This helped mom relax some that I was okay. Everyone was very
excited that we were going to have a baby. At Christmas in Salem, OR,
where my Lyon grandparents live, Grandma Lyon made calendars with heritage
photos in them for all the family. I got one too! We had a good
Christmas, but my great-grandma Rasmussen didn't. She was in the hospital
with pleurisy. Yuk! She got better though.
Mom (and me), dad, and my sisters came back to Portland after
that visit to Salem. One of the messages on the machine was mom's
OB. They called to say that they had the results of the triple blood
screen test and for mom to call even if it was the evening (it was) and the
answering service would have Dr. Rudoff call mom. Mom panicked right away
and was scared that something terrible was wrong, that maybe I had died, but I
didn't. What she told mom was that the AFP level was elevated and that
could mean a couple of things. I could have Down's Syndrome, or I could
have Spina Bifida. We needed to do a high level ultrasound to check things
out.
December 28,1999, mom and dad were able to get an appointment for the high level
scan. We had read about a very special boy, Samuel Armas before we went to
the scan. When my aunt Neva came to stay with my sisters, she asked mom
"Would you go to Tennessee?" Mom said, "You
bet!" Of course, she was hoping she wouldn't have to. Since my
mom really likes to scrapbook, she had daddy take a picture of her outside the
hospital where we had the scan done. Someday, that picture will be in
mom's album that tells all about me. It will be the picture of the day we
got "the news". The first hour of the scan, the technician
was looking at everything very carefully. She wasn't saying much, but mom
asked questions. At one point, mom asked, "Can you tell if it is a
boy or a girl?" She replied, "I was just looking at that and it
is a boy." A BOY! Mom and dad were overjoyed, since they had two
precious girls now they would have a boy too! We took a restroom break and
then it was another hour of scanning, this time with the doctor. He too
looked at me very well and at one point, mom said, "What are you looking at
now?" He said, "The Spina Bifida". Mom said,
"You mean he has it?" "Yes." Mom started to cry
and turned to daddy and said, "PRAY. Pray right now." She
cried some more and the doctor apologized for springing the news on mom and dad
like that. He thought they already knew how special I was with Spina
Bifida. It was a sad day because moms and dads don't want to see their
kids have a hard time, and they knew that I might have some hard times
ahead. Anyway, this is how they found out the news and so mom called her
mom who was on her way to visit her mom because she had been sick. My grandma
Lyon wanted to know my name so she could start praying for me by name. My
name is Josiah Michael and you can read about my name on another page!
They shared some more tears. Once mom got home, she went straight for the
computer to find out information on Spina Bifida. She wanted to be fully
informed on it because she knew very little at that point. She also let
her family know so they could start praying for me. The next few days kind
of blurred together for mom. She went to her OB to have an amniocentesis
done so that she and daddy would have even more information about me. The
church family at Emmanuel started praying for our family too. On New
Year's eve, great-grandpa Rasmussen had a heart attack and was in the
hospital. This was a very hard time for my family, but we did get some
good news. We were able to rejoice together when the amniocentesis came
back normal.
Mom and dad knew about a great team at Vanderbilt who were doing fetal surgery for babies like me. They started to get in touch with Dr. Bruner to find out what the requirements were. When the amnio came back normal, they knew they wanted to send mom's records to Tennessee for review. The first voice mom heard from in Tennessee was sweet Susan. She started our paper trail and was the one we were in contact most before we went to Tennessee. She was like a bright lamp on a dark winter night as she spoke to us about the process for Fetal Surgery. I was 18 weeks along when we found out I had Spina Bifida. Mom knew there was a good window of time for doing surgery, so she anxiously awaited news and scheduling information. Finally, we got our schedule and knew that we were to be in Tennessee on February 7th for our first appointment with Dr. Bruner and the ultrasound people. Mom (and me), dad, and Grandma Lyon underwent the extensive two days of evaluations and questions. The MRI was a unique experience for my mom and they got great pictures of me! Dr. Cheschier was a doctor from North Carolina and she was "shadowing" mom and dad for the week. She cares a lot about babies and wants to have the Fetal Surgery procedure at her home hospital, so she was gathering information. We were glad to have her along for this part of our journey. It was a lot of information to take in and think and pray about. On Tuesday evening, mom and dad said to each other. "Write down on a piece of paper if you vote to have the surgery." Both of them said yes. It was settled and God gave them both peace that they had made the right decision. Wednesday was a day to play, so we did. We did touristy things like ride the carousel and walk around and buy some Ty Beanie Buddies! Wednesday night we ate at the Outback Steak House. We were even served by a real Australian who had come to Tennessee because of a girl! Then Thursday was surgery day.
Mom says she felt very calm and peaceful before surgery. Dr. Cheschier had agreed to take pictures for us during surgery, so mom would be able to see what happened. It could have been a scary experience for my mom since she hadn't ever had surgery before, but it wasn't. There were church members back home praying for her every hour. One couple asked that mom feel like God himself had her cradled in His hands, and that is exactly how she felt! So, once she was in the operating room, she helped get on the operating table. The anesthesiologists put her arms out on the resting boards, and the last thing she remembers is saying "Give me a T." (That's cuz she felt like a T with her arms out like that.) Next thing mom remembers is being in the recovery room with sweet sweet nurse Shelly. The breathing tube made her throat sore and the oxygen tube irritated her nose, but otherwise the pain medication seemed to be working well. The sorest spot on mom was her right hand, where blood had been drawn. OUCH! It was taken under anesthesia so it didn't hurt at the time, but after surgery it was very bruised and hurt a lot!