Hello family and friends,
My name is Alexander Robert Willgress. I was born April 18, 2008 at 1:06 PM at the Monticello-Big Lake Hospital. To many people the story of their life starts when they are born, to me it started many months before.
In late August or early September of 2007 mom and dad found out that they were pregnant with me, yippee! They waited a couple weeks before telling family and friends. The pregnancy was great and in October mom and dad flew to Hawaii to meet dad's parents, Grandma and Grandpa Willgress.
When mom and dad came home from Hawaii mom had a test done called the Quad Screen Test that tests for risks for Downs Syndrome, Spine bifida, and other genetic issues.
Mom and Dad drove to Chicago for Thanksgiving to visit the grandparents Willgress. They spent time with dad's family and dad's cousin Tori, her husband Steve, and their daughter Morgan came from Maine for the holiday as well. My Uncle Andrew came from New York City.
On the drive back to Minnesota is where this story takes a turn for the worst. Mom had some voicemails on her phone from her OB doctor. The doctor wanted to discuss the results of the Quad Screen Test. It turns out that the test revealed elevated levels for Down Syndrome.
When mom and dad returned back to Minnesota they had an appointment with mom's doctor. The doctor went over the results of the test and suggested having a phase II ultrasound at North Memorial Hospital and possibly an amniocentesis.
A few weeks later mom, dad, and I were sitting in a genetics counselor's office discussing the results of the test. She talked about Trisomy 21 (Down Syndrome) and about the possible make up my genetics, if I had a Trisomy chromosomal abnormality. A little later mom was laying on the ultrasound table to have a look at me. From what mom and day say the ultrasound tech was nice, now the doctor who was to look at mom wasn't so nice in the beginning, at least that is what some people say. Mom and dad made it known they did not want to know if I was a boy or a girl, they wanted to be surprised. The ultrasound tech noticed some possible flags when looking at me. My cleft lip was noticeable and each of my feet had six cute little toes. When the tech told the doctor, the doctor warmed up a lot. The doctor advised mom and dad to have an amniocentesis to properly diagnose what I had. The doctor stuck a needle in my mom's tummy, that thing was HUGE, but mom was strong and didn't really feel a thing.
The next Monday, December 10, 2007 is the day that my parents received the news that I had Trisomy 13 (Patau Syndrome). Not to get into technical jargon but Trisomy 13 is a fatal cousin of Down Syndrome. If I was lucky enough to make it to term my life expectancy is 3 to 7 days. Mom and dad didn't take the news so great but they started to grieve then and would take what ever God would give them.
Mom's doctor advised her and dad that since I had Trisomy 13 and it being considered a fatal abnormality they could terminate at any time. I knew they would make the right choice and want as much time as they could spend with me. Mom and dad declined the doctor's offer and rest of the journey was in God's hands.
I do know the first appointment after finding out about the Trisomy 13 was a tough one for my dad. The doctor had trouble hearing my heart beat and dad feared the worse. An ultrasound had to be done in order to see my heart beating. Before every other appointment dad would ask mom if she felt me move so he could be prepared for the worse.
Because of what mom and dad had found out about Trisomy 13 they were having to make plans they never thought they would have to make. They contacted Father Michael Becker in planning to have me baptized, as well as the care takers of the cemetery and the funeral home to get what ever planned that they could.
Mom had contacted the local point of contact for Now I Lay Me Down To Sleep, a non-profit organization that provides families with professional photographs for infants who have passed away or have a fatal condition. Mom and dad drove to St. Cloud to meeting Nancy and Robin who took some pregnancy photographs of me inside mom's stomach. Nancy would take my pictures when I was born, she asked mom or dad to call her when mom was fully dilated.
In the middle of March the doctor dropped a bomb on mom and dad. She asked what day they wanted to have me induced. Being induced would be the best idea so that mom and dad could have enough family at the hospital to see me. She said she didn't want to go past the 18th of April because after that date mom could go into labor on her own. A lot of phone calls were made that day to family so that plans could be made.
April 18, 2008 came very fast to mom, dad, and me. We arrived at Monticello-Big Lake hospital about 7:00 am to be admitted and to start the pitosin. Mom and dad met their nurse and then all they could do was wait. About 11:00 mom's doctor came into see how she was doing and to see how dilated she was, she said she would be back at 4:00 to deliver me. The doctors and nurses were amazed that mom wasn't feeling any contractions. About 12:30 mom had to go to the bathroom and when she came back the nurse said that her water had broken, and that she was fully dilated. The doctor had to rush back and after about 2 or 3 pushes I was out.
The doctor announced "It's a boy!"
The doctor put me on mom's stomach and dad cut my umbilical cord. I had yet to breathe but mom and dad were massaging my body. My initial APGAR score was a 1. It took me about 4 minutes to breathe and cry. The nurses who knew about my condition were in shock and awe that I was breathing. That is when Candy from Missing Grace made an impact in my life. She nudged the nurses to do something, then set up her tripod and video camera to capture me on video. Nancy had not yet arrived at the hospital so Candy took out her camera and started taking pictures of me. The nurses asked mom and dad what they were going to name me. Dad said to mom, "what do you think about Alexander Robert." Mom's response was "yes that sounds wonderful."
After Candy started taking pictures my Taubel and Willgress grandparents came in the room and so did most of my aunts and uncles. Nancy arrived soon after and started to take more pictures. Mom and dad have almost 700 pictures of me from Candy, Nancy, and other family members.
Later on in the day mom and dad's friends Shannon and Jake came to see me, they drove all the way from Albert Lea! Jake is by far the biggest person I have ever met, he's only about 60+ inches taller than me. He even makes my two grandpas short. I am so blessed that mom and dad have such great friends.
I experienced many moments of bliss but the first one is one that I will never forget. Mom and dad gave me my first bath. When mom and dad were washing my almost full head of hair I know the look on my face was of pure enjoyment, because I was sure feeling it. After I was all cleaned up Father Michael Becker came to the hospital to baptize me. Almost my whole family was there to see me being baptized, I am so blessed to have so many people who love me.
A little while later my doctor arrived to check me out. She is a very kid lady and said I was doing as well as I could be doing. There were concerns about my eye sight, my hearing, and my ability to eat, because of my cleft lip and pallet. The doctor recommended a feeding tube so that I could eat. Later on that evening I was fitted with a feeding tube and had my first x-ray (to see if the tube was in my stomach). The nurses showed mom and dad how to feed me and they provided them with enough food for a few weeks.
That night the nurses took me to the nursery so mom and dad could get some sleep. I was always in someone's arms in the nursery. The nurses would bring me in to mom and dad's room so I could be fed. Early Saturday morning my doctor told mom and dad that I could be taken home. Mom and dad frantically scrambled for the phones to call family to go purchase things so I could come home. Because of my feeding tube the hospital contracted a hospice nurse to help mom and dad out.
Getting ready to go mom and dad put me in the cutest little frog out fit and placed me in my car seat for the ride home. I was a snug as a bug in a rug in my car seat. Mom sat with me in the back seat and dad drove us home, in mom's car.
When we arrived home everyone was there waiting for us, it's amazing having seventeen of us in mom and dad's house. Mom had a list of chores that needed to be done so most everyone was put to work. A little later the hospice nurse came to visit so we could go over the care that I would need.
I had a restless night Saturday night. I think I was a little over whelmed with everyone being at the house. I know that I kept up almost everyone that stayed at mom and dad's house.
Sunday morning Grandpa Willgress was holding me on the couch with my Missing Grace Bear rubbing his soft body on mine, it felt so nice, and almost as nice as getting my hair washed.
Sunday was full of visitors. Mom and Dad's neighbors Cheryl and Dan came over to see me, then later on in the day Jon, Jen, and Chloe came to see me. Jen and Chloe held me and Chloe gave me a kiss on my forehead.
The rest of the day is kind of a blur, just spending time with mom, dad, Auntie Sarah, and Grandma Willgress. Later on that evening my breathing became a little erratic and Grandma Willgress gave me to mom. Dad came into the room and him and mom were a little concerned because I wasn't breathing very well. A few minutes later my muscles went limp and I was on my way to heaven.
I might be a little biased but I know that I had the greatest 63 ½ hours of life anyone could ever have. I was in someone's arms my entire life and I was loved by everyone who knew about me.
Mom, dad, Auntie Sarah, and Grandma Willgress started to cry. Mom and dad used a stethoscope to try to hear my heart beating but it wasn't beating anymore.
Dad called the hospice nurse to tell her that I had passed on. The next few hours were spent holding my body and calling my relatives to tell them that I had passed away. Mom and dad dressed me in a cute white outfit and the funeral home lady came to pick me up. Mom and dad would see and hold me a few more times at the funeral home and during visitation.
I watched my loved ones coming to see me for the last time, from heaven with those in my family who have passed on before me. Auntie Catie was driving her cute little Mini from New York. Cousin Tori was flying from Maine, Grandpa Ed was driving from Illinois, and most of the Taubel contingent was coming from Wabasha.
Mom and dad decided to name Auntie Catie and Uncle Stephen would be my Godparents. Uncle Stephen was my pallbearer at my funeral, in which Father Michael presided over. Many loved ones came to my funeral. I was buried at St. Michael Catholic Churches' cemetery, come and visit me any time.
Mom and dad visit the cemetery often, and they know I am always watching out for them. Every Sunday at church mom and dad light a candle and say a prayer for me.
I love my parents and miss them dearly and I know they feel the same way about me. I thank God every day for the time, even though it was so short, that I was able to spend with mom, dad, and the rest of the people who love me.
Thank you for reading my story, if you see my parents please tell them that I love them so very much.
Alexander
