It was first diagnosed 155 years ago (in 1862), but has been depicted even earlier in one of the angels of an early Netherlandish painting representing the birth of Christ.
It is recognized in the medical profession as trisomy 21, but has more commonly known by John Langdon Down’s namesake of Down syndrome.
On Wednesday, August 9th, Nicole and I took baby Finn to see Dr. Jennifer Layman for his first pediatrician’s appointment. After the initial examination, Dr. Layman sat in front of us to give us the news that she believes Phoenix (aka Finn) was born with Down’s syndrome.
About the News
I don’t think neither Nicole and I were surprised with the news about Phoenix’s condition, as observations we had made started to become clear:
- during the final ultrasound, Dr. Perry indicated Finn had a smaller femur than what was expected.
- upon Phoenix’s birth, Dr. Perry noted that Finn had low-set ears in the delivery room.
- baby Finn struggled to latch on to Nicole in order to feed during the first 48 hours after he was born.
- we noticed the formation of his toes were slightly different.
As I noted in my “Meet Phoenix” publication (March 18, 2017), we had the 3D ultrasound completed at Community North hospital to determine if there were any issues with Phoenix. Our primary goal was to make sure our baby was healthy. The results from the Panorama test showed signs of Down’s markers, but the test itself wasn’t designed to be used in the case of a pregnancy with a vanishing twin.
At the time of the 3D ultrasound, we were told that there was less than a three percent chance baby Finn could have trisomy 21. Without question, there wasn’t anything that was found during the March 7th visit to the specialists at Community North hospital that caused us any hesitation to continue with our pregnancy. We believed 100% that our miracle baby was created by God especially for us.
The conversations we had with the specialists, the information we gained from the hospital during Phoenix’s birth, and the observations we had made put us into a position where we were not surprised about this latest news regarding our miracle son.
As I noted above, God made Finn just for Nicole and me. He is simply perfect!
On August 9th, Dr. Layman sent us to Community North hospital for a series of tests regarding Phoenix’s health. Additionally, a follow-up hearing test was scheduled in early September, since Finn did not pass the hearing screens performed at Community South while we were still at the hospital for this arrival. A sleep study and visit with specialists at Riley Hospital also transpired within Finn’s first six weeks.
Because of common issues related to Down’s syndrome, the following tests were performed:
- heart test
- thyroid test
- vision test
- breathing test
- hearing test
- sleep study
When the test results came back, we received positive results for every single test. Our level of joy escalated higher with every positive result!
Baby Finn may have been born with Down’s syndrome, but he is strong and healthy – doing excellent with his progress, according to the First Steps team who have visited baby Finn multiple times since he arrived home and a number of medical professionals we have visited.
Our miracle baby continues to impress us … on so many levels.
One might think that our life has taken a major turn as a result of this news. Honestly, that has not been the case. Certainly, there have been some unexpected testing performed, more doctor’s appointments to attend, and working on getting early therapy arranged – but for the most part we are doing what every couple with a new born baby does … loving and enjoying our very special gift.
Finn has already touched our lives more than I would have ever imagined. The relationship that Nicole and I have has grown stronger every day – really since the early days of the pregnancy. I still find myself watching the “Our Pregnancy” video at least once a week, just to absorb the wonderful memories of baby Finn’s pathway into our lives.
Of course, I still find myself in awe of just how beautiful my pregnant Nicole really was. Amazing!!!
New Friends & Stronger Bonds
As we began to share the news about Finn, I was surprised at the outpouring of love from our friends and family.
Nicole’s mom purchased a ticket to spend a long weekend with us, which was a wonderful time. Before she had arrived, she had already purchased and read books about Down’s syndrome and baby Finn loved spending time with Grandma Deby!
We were introduced to a series of new friends, those who have raised children with Down’s syndrome and those who currently have children they are working with on a daily basis. One introduction was with a family whose child was born a week after baby Finn.
Clearly, God knew what he was doing when he brought Phoenix into our life. He then surrounded us with friends and family that are going to make the parenting experience phenomenal for our newborn son.
To Joey, With Love – Prepared Us Before We Realized
What I find so interesting is how God places markers into our life, well before we can comprehend the reason.
When Nicole saw “To Joey, With Love” (the true-story about Joey Feek, Rory Feek and their newborn child, Indiana) would be playing in limited theaters on Tuesday, September 20th, we bought the tickets online right away.
While Nicole followed their story on social media, the depth of knowledge around their story wasn’t fully revealed until we watched the documentary. We knew that their child, Indiana, was born with Down’s syndrome and the fate of Joey’s life – but so many of the finer details were new to us.
We learned so much about watching the film together. At the time, Nicole and I had already started planning to have a child together. That evening, we talked about the “what if’s” that were related to the movie. In every case, there wasn’t a single hesitation over wanting to start a family together – a child that represented a part of both of us.
What we received is an amazing baby that already has attributes of both of us! I love our son, so much!!!
I feel like I am the luckiest person in the world. After a long road of searching, I found the woman who is the perfect complement for me.When I look into Nicole’s beautiful eyes, I realize she feels the exact same way about me too.
We understand and get each other to where it has become predictable to know what the other person is thinking.
With our situation, the pregnancy was a miracle from the beginning. As things progressed, Nicole and I grew closer as a couple and we recognized even more miracles along the way.
That greatest miracle was when baby Finn made his appearance a week early on August 4th. Every time I see him move, observe him looking into my eyes, I can’t help but reflect on the series of miracles that brought him here and I can’t wait to experience all the exciting times in our future as a family.
To say that we are blessed is almost an understatement, but we are both so glad for everything God has done to prepare us for our amazing son … and then give us such an amazing son!
Walk with Us & Support A Cause
The story behind Joey, Rory and Indiana had a major impact on us. What I didn’t really think about, until I sat down to write this blog, was the uniqueness of their child’s name and our baby’s name. They named their baby after a state in the United States, while we decided to select a city in the United States. I think it would be cool, if someday the two could meet in person – so that Indiana and Phoenix could be side-by-side for the first time.
Until then, Nicole and I are doing everything we can to support and educate the community about Down’s syndrome. In fact, on October 14th, we will be participating in the Buddy Walk in downtown Indianapolis. Nicole and I have created Team Finn and have friends and family who are going to be walking with us. If you wish to join us for the Buddy Walk or make a donation, simply navigate the following link for Team Finn:
We hope to receive your support, in one way or another.
The Road Ahead
The focus for this publication was to provide an update on baby Finn, since I don’t always get a chance to talk with everyone in our social and professional circles.
The road ahead for us is one of excitement, joy and anticipation. I can’t wait to watch our son grow and interact with us. I can’t wait to watch him learn about life – to see the world – and I am eager to hear him relay his thoughts and views back to us.
He will forever be our miracle son and we will always realize just how blessed we truly are to have him in our lives!
#finnmakes5 #totallyblessed #theluckyfew
Have a really great day!!!