Pictures taken by the fabulous Randall’s Photography
Doctor: …He also has a 1 in 4 chance of heart disease or some sort of heart defect.”
Me (in my head): “Wait? What? Can we slow down here?”
Doctor:…..meet with genetic counselor…”
Me: “Genetic counselor? Down syndrome? Aren’t I too young? Oh, that’s why he questioned how old I was…”
Doctor: “….blood cell test is 99% accurate…. 2 weeks to get results….”
Me: “2 weeks?”
Doctor: “Cardiologist will do echocardiogram….”
Me: “But his heart has sounded and looked perfect up to this point! At least it did 2 weeks ago!”
Doctor: “Any questions?”
Me: Blank stare. I look at Brett. Blank.
Doctor: “Ok. Well, now you will meet with the genetic counselor to ask about your family health history, give you more information about the blood cell test, and make your next appointment.”
Yes, this pretty much sums up my initial reaction to hearing this news, about 2 1/2 weeks ago. Let me start from the beginning….
My second to last blog post was an update on Damon regarding his 32 week ultrasound. On that day, it was a very crazy schedule for my OB, which resulted in me getting the ultrasound, waiting, leaving the office and coming back a couple hours later, waiting, and then finally meeting with my OB. As you may have read, everything looked great, except he was breech. Then, on March 31, I went back to see my OB for my 34 week appointment. When she came in, she immediately apologized for the last appointment. I shook it off like no big deal, but then she goes on to say that she is apologizing because after careful observation at the pics from the ultrasound, she saw something questionable in his bowel. She and the ultrasound tech questioned that Damon had a condition called pyloric stenosis – which is when the pylorus muscle thickens and prevents food from passing from the stomach to the small intestine. She told me that she is referring me to a high-risk OB to get it further checked out. If he has it, he will be required surgery to allow nutrition to pass, or else he would be vomiting over and over.
Two days later on April 2, we meet with a high-risk OB at St. Vincent. We had another ultrasound done to confirm or rule out the pyloric stenosis. Well, Damon was being stubborn. In 2 weeks, from 32 to 34 week gestational, he had moved to the transverse position (his head was pointing towards my hip). And on this day, he just had to choose to be BACK up, rather belly up, so it was hard for the tech to get a good picture of his heart. After several minutes, (and me getting up and moving, practically doing jumping jacks to get him to turn belly up), we had the high-risk OB come in and take a look.
What he confirmed is that Damon does not have pyloric stenosis, but rather a condition called duodenal atresia. It’s similar to pyloric stenosis, however the location is different. There is a thickening of cells in his duodenum (which is the first part of his small intestine) that is causing a blockage, and therefore little or no nutrition will be able to pass through. He will be required to have surgery after birth.
When the doctor first told us the diagnosis, we were prepared for that answer and the solution of surgery. We had 2 days to pray and prepare ourselves with the news of the possibility of surgery and staying in the hospital for some time after birth.
Then…. the conversation at the beginning of this post occurred. The doctor started spouting out statistics, and Brett and I sat there feeling like punching bags. If you click on the link highlighting “duodenal atresia” above, you will read,
“Associated abnormalities have been found in some infants with duodenal atresia…” As you heard the doctor above, 1 in 3 babies with duodenal atresia also have Down Syndrome and about 20% have heart disease. Therefore, to first rule out any genetic disorders, I had a blood cell test done. My blood was immediately drawn and taken to a lab to test for the following genetic disorders: Trisomy 21 (Down syndrome), Trisomy 18, Trisomy 13, Monosomy X, and Triploidy. As you also read, it took 2 weeks to get the results of either “high risk” or “low risk.”
And so the waiting began. The first few hours after leaving the hospital was probably the hardest. We were numb with shock. After all, everything had been going so well and there were no warnings beforehand. Brett called his parents first (while vacationing in Florida), and then we did a 3 way call with my dad, mom, and sister at her house (where Kherington was staying during the OB visit). That’s when I finally let my emotions go. Right away though, I knew and trusted God. I know He is Sovereign. He knew Damon before the foundations of the world. He created him as HE saw fit with the exact egg and exact sperm to come together at the exact time. That gave me comfort. On the phone with my parents I said, “I’m not asking why us? I’m asking why NOT us?” Damon is a gift from God no matter what his condition.
The next 2 weeks were an emotional roller coaster. We told family and close friends. We could FEEL the prayers of our family and friends. Each day got easier, and I knew it was because I was surrounded by God’s peace that passes all understanding. Brett and I prepared ourselves emotionally and mentally (well as much as we possibly could at this point) for the possible news that Damon had Down syndrome. Even though the odds were still for us (2 out of 3 did NOT have Down syndrome), we still did not want to get our hopes up. Our prayer over and over again was the same as Jesus’ in the garden before he was arrested and crucified on the cross,
“Father, if you are willing, take this cup from me; yet not my will, but yours be done.” (Luke 22:42)
We ultimately wanted God’s will for us and Damon. He sees the big picture. We tried to stay focused on eternity. And when you start looking through God’s lens, your perspective starts to change. Our thoughts became, “So what if he has Down syndrome? Why is that such a big problem? Yes, there will be many challenges, but are we more concerned about what people think and not having the perfect American family?”
One day Brett was doing research and came across the statement that people get tested for these genetic disorders and then abort their baby if it comes back high risk. He was flabbergasted. Yes, people do this because they want the perfect baby. The no problems, straight A, go to college, get a good job, marry the right spouse, make money, perfect kid. Would I ever abort my child? NEVER. It’s sin because life starts at conception. However, do I desire that list for my baby? Yes. And one of the big things that God taught me these 2-3 weeks is to Let. It. Go. (and I’m not talking about the theme song from Frozen!)
I’m type A, controlling, organized, need-to-have everything-planned-out-months-in-advance type of person. If I can control my environment and circumstances then I believe life can go so much smoother. I can anticipate change and be prepared. And then we received this news and as Brett and I prayed that the Holy Spirit will teach us through this trial, I knew immediately what He wanted me to hear.
Nope Christina. For one, you can’t do it yourself, and you cannot control it all. The clean house and the obedient toddler among a perfectly organized schedule does not matter in eternity. Pinterest, Facebook ads, and even good intention blogs do not have the answers. There is no such thing as a perfect family. And what IS a perfect American family after all? Who says the family with Down syndrome or William’s syndrome cannot be considered a “perfect” family in our American society? Well, there’s no such thing as perfect. And if there were, we wouldn’t need Jesus and His grace and forgiveness. Let’s stop looking down on others. Let’s stop comparing ourselves to each other. Yes, I’m talking to the Christian families, who probably judge and compare the most. That’s called following the Law and not grace.
Brett and my perspective on special needs children have changed as we have looked through God’s lens. During that waiting period, my love for Damon grew so much and the fact that he possibly had a genetic disorder didn’t change my love. God even loves Him more than I do. God loves ALL people, regardless of their health, race, color, financial status, etc. As my pastor said this Easter morning, “In Christ, there is nothing we can do that would make God love us more, and there is nothing that we have done that will make God love us less.” No matter what sin we have committed, how successful we become, how “perfect” our family is, or how many chromosomes we carry, God is Love and His love never changes.
I’m not going to lie. When I used to see a special needs person, one thought was always, “I’m glad that’s not me or my kid.” C’mon. You know you think that too if you don’t have a child with special needs. Now I see the child in a wheelchair at the children’s museum, and think, “Beautiful. Made in God’s image. God loves her/him. That COULD be my kid, and after all, I’m not in control; God is and He knows best.”
Well, on April 14, I received a call that the blood cell test came back “low risk.” They cannot say 100% no Down syndrome or other genetic disorders, but it is fairly accurate that he does not have Down syndrome. Fortunately, Brett was working from home and I immediately rushed in his arms and told him the news. We both cried and prayed our thanks to God for taking “this cup from us.” Brett was actually more surprised because he really began to wonder if God had a specific plan for our lives where Damon would have Down syndrome. But He is sovereign and for some reason is allowing us to go through this trial and not allow him to have a genetic disorder.
The next day I had another ultrasound and then a pediatric cardiologist performed an echocardiogram. He said that Damon’s heart looked exactly how it should at this point in gestation and did not see anything alarming. Praise the Lord again for the good news. The high risk OB again confirmed the duodenal atresia. He said that he didn’t want to give us false hope that we were completely out of the woods and that there wouldn’t be a disorder or syndrome that would show up after birth, but he did reassure us that our road would be much smoother than a lot of families he sees.
We meet with the pediatric surgeon on Wednesday, April 23. We have so many questions regarding the surgery and will have most answered then. Please pray with us that God will continue to surround us with His peace and that He will make us more like Christ through this process. Our desire is that He will be glorified most.
*I wanted to add a quick statement about my OB who didn’t tell me about the questionable ultrasound picture until my next appointment. When she was apologizing for first missing it and not telling me until that appointment, I immediately told her it was God’s timing in the matter. The day after that ultrasound, Brett and I left for San Antonio to spend the weekend at the Christian Worldview Film Festival. If we had that news, we would have been worried and not had been able to enjoy the weekend as we did. My OB is wonderful, and it gave me another opportunity to give God all the glory.
On March 12th, we were able to get a sneak peek at our Damon! It was a belated birthday present for me! Normally, a 3rd ultrasound is only required if there is a concern. I have had a minor side effect that questioned the location of my placenta. My OB and I decided it would be best to do the 3rd ultrasound to ensure that the placenta is not blocking the cervix.
Fortunately, the placenta was not blocking the cervix and was in a good location. Most everything looked great! Damon is measuring in the 60th percentile right now in all his measurements. He’s 4 lbs 1 oz, and measuring a week early.
However, I am glad that we did the ultrasound because we found that Damon is breeched – butt down rather head down. My OB said he has a 50/50 chance of turning at this point since I’m 31 weeks and he’s growing more. Pray that he will turn! My OB said that if she doesn’t have a good idea of his position at week 36, she’ll do a quick ultrasound to see his position. If he is still breech, we will schedule a C-section.
I’m not too worried. I know many people who have successful C-sections, yet I had such a great experience giving birth to Kherington and would love to do the same. But, I know God is in control and the most important part is that I have a healthy baby boy in my arms when the procedure is finished! I’ll keep you updated as we get closer.
Here are several pictures of our sweet boy. Already, people think he looks like Kherington and Brett!!!! Will I ever have a baby look like me? 🙂 I know I know…it’s too soon to tell.
He is crossing his arms and has his hands on his cheeks. Too cute!
Love this picture with his tongue hanging out!! You can see his legs and feet up by his face.
No more pictures please!!! Paparazzi go away!
Sweet little face.
He has hair!
His foot and long toes.
30 week picture: Kherington is listening to Damon. Love it!
My sister asked me if the ultrasound tech was 100% sure of the gender. Well, I’ll let you decide! 😉
My OB’s office got a new ultrasound machine this year that shows 3-D images at this early in development (19 weeks)!
So who do you think he looks like? The ultrasound tech said that he has my chin. Brett thinks he looks like me! Whohoo!
We announced the news to our families by giving each set of parents a picture desk calendar. On the month of May, the “it’s a boy” picture above is printed. Then, to announce the name we played a game. We set before them 3 pictures, 1 at a time, that are clues to the first and middle name. They had 15 seconds to see each picture until they guessed the name correctly. The order of pictures was hardest to easiest clue.
Let’s see if you can guess it!
The answer: Damon
(Damon’s Grill, Damon Bailey, Matt Damon)
Damon Emanuel Varvel
Brett and I fell in love with the name Damon. It’s not very common but not a difficult name where you get “huh?” or “spelling please?” (you know…..like the name Kherington!!!) Damon is Greek, meaning “to tame” or “subdue.” He was very active during the ultrasound. The tech mentioned this as she kept moving the probe around my belly getting the measurements and pictures she needed! And of course if he is anything like his Daddy (just ask his parents)…..well we’ll just say the name just might fit him! 😉
Also, Brett and his dad were huge IU basketball fans. He likes to tell the story how he pretended to be Damon Bailey when playing basketball in the driveway as a kid.
Emanuel is my Dad’s and Grandpa Osenni’s middle name: Philip Emanuel Osenni. My sister, Laureann, named her first born son, Carter Philip. Before we knew the gender of Kherington, Brett and I were convinced that Emanuel would be the middle name of our first born son. Emanuel is the Italian spelling of Emmanuel or Immanuel, meaning “God with us.”
The ultrasound appointment was on Tuesday, December 17th. The Sunday before that, the 15th, was the first time I felt him move. I was laying in bed that morning after I snoozed my alarm to get up for church. And good thing I did because as I was dreading getting out of my warm covers, I felt tiny flutters!!! Then, I felt him again during the church service as we were singing worship songs to the Lord. He was jumping for joy. Shortly after, Pastor Curt played a powerful video of a voice recording of Charles Spurgeon during a sermon he preached on Christmas Eve, 1854. He is explaining the definition of Immanuel, “God with us.” After feeling my child for the first time and being moved by the film, I knew deep down I was carrying a boy and his name would be Damon Emanuel. Some people may not like the idea of using one of God’s names for your child, but it is special to carry on a family name, and because he will always be our reminder that God IS and ALWAYS will be with us.
Please take a few minutes to listen to the video here.