Tomorrow (Jan 31) is Omphalocele Awareness Day! Yes, I have a special day for me! There are all sorts of Awareness days out there, for every sickness, ailment, condition, baby loss, infertility, adoption, etc. I have talked about infertility a lot on my blog, and a bit about PCOS, but I haven't talked a lot of about my birth situation.
The Mothers of Omphalocele's is a group that started in the 90s (I think), and because of their acronym (M.O.O), OA has a black and white motif. I discovered that there was an OAD a few months ago, and I was super happy (and I also thought that it was a bit strange and weird!)!! I knew that I wanted talk a bit and shine light about this day and this condition, since it isn't talked about at all.
I will try and make this short and sweet, as I don't want to A) Spend hours and hours doing this post, and B) I don't want to bore you. So, without further ado...here we go!
First off....
I have been posting some facts about Os (from now on, I will be referring to Omphalocele's as Os, so that I don't have to keep spelling it every time); facts about my personal experience with one, and some general facts about it. Head on over there to check it out!
What is an O, you ask? Well, essentially, it is when all (or most) of the small and large intestines grow outside of the baby. Per Wikipedia: a rare abdominal wall defect in which the intestines, liver and occasionally other organs remain outside of the abdomen in a sac because of failure of the intestines and other contents to return back to the abdominal cavity during around the sixth week of intrauterine development.
My mom was pregnant with me, and since no one really knew of my correct due date, the doctor had told her to go into Kamloops (back then, they were really in the woods!) to try out their new ultrasound machine. And that is when they found out that SURPRISE! something is horribly wrong with your baby. They didn't tell my mom then (how weird was that??), but the doctor that my mom was seeing while she was pregnant with me came to their house in person to tell them. He told them that I would have to be born in Vancouver (Kamloops wasn't and still isn't equipped to handle babies like myself). They flew to Vancouver a few days before I was born. I think they were afraid that Mom would have me on the side of the road, or something! I was born at/in Vancouver General Hospital, as the BC Children's Hospital wasn't built yet.
Mom chose to have me naturally, and I was born in June at a few minutes past noon. Cause I am timely, like that! Mom was able to see me as soon as I was born, then I went to get "wrapped up" with plastic wrap (true story) to keep everything in. I believe that I was put on a trachea right away, and after a few weeks, they put a Teflon bag over the O to help them (organs) stay in. Every few weeks or months, as the skin was surrounding the O would grow. they would make the bag tighter and retie said bag (Dude, you can't make this stuff up!). I was in the hospital for 22 months. I had my "big surgery" to put everything back in when I was 4 (in/at the Children's Hospital).
Most babies don't stay in the hospital for much longer than a few months. However, I had so many problems that arose; mainly breathing, lung and heart issues, which extended my stay. I had 12 cardiac arrests, several "cut downs" (where they sew the IV INTO the skin). Also, this happened again in my 30s when they had to sew the IV in yet again), had an NG tube, tracheotomy, didn't cry, talk, eat by mouth, or walk, laid on my back (and a bit on my side), didn't sit on a carpeted floor until I was nearly two. Then, it was back and forth for a couple of years until I had my surgery to put everything back in when I was 4. Then I would go back down for yearly, or every second yearly appointments. I had a small surgery to remove some teflon in my throat (I think?) when I was 10 or 11. I was pretty healthy until I was in my 30s, when I got really sick, and had to go back to VGH to get my CHD/CHF dealt with.
Here are some other facts about me surrounding my birth:
My mom would come down every month for a few days to visit me. Dad came down every few months with Mom.
My parents would call every morning (and night, as well), to see how I was doing.
My first memory is being lifted up and feeling the trach in my throat.
My mom didn't get to hold me until I was several months old.
My lungs wouldn't inflate without the respirator at one point, due to my laying on my back, and all of the pressure/weight of my organs being outside my body. The lungs went "plastic".
I had 12 cardiac arrests.
I had staph infection at least once while I was in the hospital.
I had a 50% chance of surviving, the doctors said.
Despite what I went through, there are a ton of pics of me smiling.
Mom says that I was born with jet-black hair!
When I got home (at 21 months), they still had to do PT wth me. I actually remember them "burping" me to get the phlegm out). I remember lying on Mom's lap with a towel on my back.
My organs were put back in mirror image.
I had so many people praying for me (that was before internet and social media), and, I STILL get asked how I am doing (health-wise), and STILL get told that people were praying for me!
I am in a medical journal somewhere.
My family was STRONGLY discouraged from them taking pictures of me (especially at the beginning). They didn't think they would want to remember a dying child.
I had eye problems as a child. Probably from staring at lights for the first 21 months of my life.
The doctors told my parents that would be brain damaged. That I wouldn't amount to anything.
Above my bed, there was a plaque, or a picture with the phrase "God don't make no Junk" printed on it. I know it is horrible grammar-wise, but the point was that He didn't make a mistake with me, and that I wasn't junk! I think whomever gave to me wanted the nurses and doctors to know the same thing!
So, that is the VERY shortened story of my birth and condition! I am thankful that my parents, even though they were young, were (and still are!) amazing parents, and did their best in the circumstances that they were in. They were given so much information, and they had to make so many important and hard decisions. They never gave up on me. They came back to the ranch to live their lives, all while trying "parent" a sick and at times, a dying child. Things didn't finish when I came home, either. My medical needs/care didn't end when they walked through the front door. Mom was pregnant with my younger brother then, and they still had to do PT and OT therapy when I got home. They had to teach me to walk, talk, and eat. I still wasn't out of the woods. They had to deal with people staring at me (I actually remember this happening when I was like 3 - 6 years old), and wondering what was wrong with me. They had to deal with a 2.3 year old and a new baby that Fall when my brother came long. They still had to go appointments for/with me. They were probably new issues that arose. They were probably still scared for me. What would my life look like? Will she be able to walk, talk, and grow up "normal"?
They loved on me, and told me that I was special and a miracle. They told me that I was beautiful, and that God had (has) a special plan for me. When I grew older, I realized what the verse "Fearfully and Wonderfully made" really meant! Even though I wasn't perfect health-wise, I know that God MADE me perfect. God has made EVERYONE perfect; fearfully and wonderfully made; made in HIS image. He saw my being made even before the world came to be! For You formed my inmost being; You knit me together in my mother’s womb. 14I will praise You, for I am fearfully and wonderfully made. Marvelous are Your works, and I know this very well. 15My frame was not hidden from You when I was made in secret, when I was woven together in the depths of the earth.…16Your eyes saw my unformed body; all my days were written in Your book and ordained for me before one of them came to be. Ps 139:14-16.
I am thankful that my parents instilled these truths to me. I am thankful that they chose not to forget what happened; they talked about it all the time...they still do! I am thankful that Jesus saw fit for me to be born, and for me to beat the odds! I am thankful that I can share my story to others. I am thankful that He saw fit to bring me through my adult health issues back in 2010. I am thankful that I am a testimony of His grace, and healing, and also, good medicine (and thankful for FREE Canadian Health Care), and the doctors, nurses, and medical workers.
I am fearfully and wonderfully made, and so are YOU!!!
I am a few months old in these pictures below.
Me going home in Feb '78.
I was a few months old here.
I hope you enjoyed reading a bit of my story. If you didn't, well, I am sorry for wasting your time! But, you probably learned something, yes?
2 comments:
Wow! That’s all amazing! I’m so thankful you survived all that and grew up to be who you are. That must have been very difficult on your parents and I’m thankful they did everything they could for you. Psalm 139 is my favorite passage.
Your blog made me cry. Donna Benson, a RN, was the one that told me they called Blue Code ( cardiac arrest) on you 12x that she knows of just on her shifts. We never did know the total number of times. You had staff infection 3x so severe (large boils inside and outside of your body) they the doctors were sure that your little insides would be so scarred you would never be able to digest food ever!
Yes ... we were told that up to 1980 circa you were the sickest child in VGH that ever survived. That was in an article written later.
——Mom
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