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Your Child’s First Name
Your Child’s Age
Do You Have a Website / Blog?
What is Your Website
Does Your Child Have Siblings?
Yes. Coldon is a triplet and his siblings are Ella and Greyson.
Did You Have a Prenatal or Postnatal Down Syndrome Diagnosis?
We received a Postnatal Diagnosis. This was an absolute surprise and the reason I emphasize it, because having a high risk triplet pregnancy, I was monitored much more closely than a single pregnancy. There were ultrasound anatomy scans every two weeks, heart monitoring each time and a greater push for genetics testing, which we did. I was also on hospital bedrest for 40 days and was monitored daily for heart beast and had weekly ultrasounds. Not once in all the extra monitoring did they capture any signs of Down Syndrome. Coldon was just as active as Ella and Greyson and in the last ultrasound before delivery, my doctor commented how “perfect,” baby A’s (Coldon) aortic arch was.
How Was The Experience Surrounding Your Child’s Delivery?
Our delivery was incredible and a blur. There were over 30 people in the operating room, as I had to have a C-section because of triplets. Among these people were of course my doctor and nurses, but the head neonatologist and three teams from the NICU. I was scheduled to deliver on February 2nd, but delivered on January 29th because baby A’s (Coldon) water broke.
I vividly remember the Neonatologist coming to my side as my doctor was completing my procedure and asking my husband and I if we had been informed of the possibility of baby A having Trisomy 21. I was still on the operating table, under a tremendous amount of medication; I had no idea what he was talking about. I’m sure I looked at him like he had six heads. I didn’t know what Trisomy 21 was. He went on the explain Trisomy 21 was Down syndrome and they suspected baby A may have it as he had some soft indicators; the gap between his toes and the single crease on his hands. The information didn’t resonate with me until well after the delivery was complete. There was so much going on and all I was able to focus on was the fact I had three babies in the NICU and how I was able to breathe again.
What Was It Like Bringing Home a Child with Down syndrome?
Bringing Coldon home was surreal and celebrated. He spent 49 days in the NICU, because he struggled with feeding from a bottle. However, once we brought him home the reality of having three newborn babies and one who had feeding difficulties sank in and this was the first time I felt like I was the only person in the world experiencing this. His diagnosis didn’t cross my mind then. It wasn’t Down syndrome; it was the feeding difficulty and taking longer than an hour to take a bottle when I had to feed two more as well. Overwhelmed, doesn’t begin to describe how I felt. I was scared to death this feeling and our circumstances were never going to change or get better.
What Has Development Been Like For Your Child?
Coldon has done really well with development for the most part. He eventually had to have a G-tube placed and the tube has hindered his ability to spend time on his tummy and learn to crawl. However, having his brother and sister, Ella and Greyson with him everyday has pushed him to push himself. I attribute his progress developmentally to his siblings. When he watches them doing something, he wants to do it.
Coldon was sitting up assisted at six months old. Many of his doctors couldn’t believe he could hold himself up so well, so early. He was able to sit up unassisted at 10 months. He is now army crawling and is becoming mobile at 11-12 months. The hospital we delivered at asked if they could perform a Bailey assessment, to determine their development, on Coldon and Ella as they were both receiving Early Intervention therapies. The psychologist informed us his cognitive ability score was a 90 and that typical children his age average 100. Coldon has been the most aware and inquisitive of the three.
His greatest developmental win however, has been eating solids. Feeding has been a tremendous struggle and still is with liquids. However, Coldon is my best eater, he LOVES food. Anything we give him he eats it without choking or gaging and his therapists have even commented on the lateral movement of his tongue being textbook. As a result of his ability to eat solids so well, we no longer were using his G-tube and it was removed the week before Christmas. Coldon is an incredibly driven child, but his brother and sister give him that drive. Currently we give him the same sippy cup as Ella and Greyson, in hopes they will show him how to drink from it.
What Are Some Good Surprises You Were Not Expecting About Raising a Child with Down Syndrome?
I’m not so sure I find these surprising, but there are many things I see in Coldon everyday that proves the stereotypical Down Syndrome wrong every time. He absolutely is no different than his typical brother and sister, who he shared the womb with. He is more motivated and driven than they are and many of our therapist believe he is ahead of them in cognitive development. Coldon also has the most unbelievable LOVE for us, absolutely unconditional!
One thing he does, that does surprise me is he always wakes up with a smile on his face, no matter what happened the night before. I was also surprised when Coldon showed me how wrong the stereotypical perceptions of Down syndrome are; he is definitely not always happy. I felt like he was never happy when he first had his G-tube placed. He is more like his siblings than he is different from them and he looks like us too.
What I have found to be most surprising is a passion that has ignited in me to advocate, not only for Coldon, but also for all children and individuals with Down syndrome. They deserve to be treated like any other individuals. I have become very active in our local Down syndrome community and have become a support avenue for other moms. I’m looking forward to becoming more active with policy and changes as my triplets get older.
What Are Some of Your Favorite Family Activities?
Our triplets are only 12 months old, so we don’t get to do many activities aside from taking rides and going to friends and families houses. We take the babies for a ride every Sunday, to get them out of the house and if the weather is nice, we go for a walk in their stroller or wagon. My husband’s aunt has been one of the most supportive persons about Coldon’s diagnosis and with the triplets in general. We go to her house on Sundays after church for lunch. This has been a family tradition for decades.
Once flu and RSV season are over, I fully plan to get the triplets out and interacting with other babies. We will attend as many of our local DS functions as we can and we are planning two family vacations this summer. My husband and I love to travel, hike and camp. We are looking forward to the triplets getting old enough to enjoy this with us!
What Challenges Have You Faced?
There have been many logistical challenges because there are three babies. Coldon has many doctors’ appointments and therapies throughout the month. I have to make sure someone can stay at my home with Ella and Greyson. Three babies are demanding and we don’t sleep much, but when you add a special need, specifically feeding issues, the demands and sleep deprivation get worse. Our greatest challenge has been feeding. I have had to learn how to perform RN duties as well as Speech/Feeding therapist duties, (without the education part). I had to educate myself on his G-tube as I received very little support from the medical team.
However, what has been most challenging for me as a mom, has been dividing my time equally with all three of my children. Coldon requires a lot more attention and as he is getting older, his behavior is changing and I’m being pulled even more from Ella and Greyson. There are nights when I feel like I hardly got to see them and I was home with them all day. This is hard and most moms of multiples can relate; this isn’t specifically a special needs challenge. However, I have started taking the time to spend one on one time with them individually every chance I get and I am now able to divide my time more evenly.
What Would You Tell Yourself When You First Received Your Child’s Diagnosis Now That You Know What This Journey Is Like?
Honestly I have embraced Coldon’s diagnosis from day one. I know this is Gods plan for us and I haven’t had any regrets or negative thoughts about his diagnosis. There are days when I hate Down syndrome, because it changes who my little boy is, but that isn’t Coldon and he isn’t Down syndrome. It’s a learning process for both of us and we have to learn how to better control it. I would tell myself to prepare for the most rewarding experience I’ve ever had, and to step back and breath… it does get better and easier. The challenges are still ever present, but they are different. I would also tell myself to listen to my gut instinct and don’t always rely on the doctor to have Coldon’s best interest.
What Would You Tell a Family Whose Child Just Received a Down Syndrome Diagnosis?
I could write a book on what I would tell a family who just received a Down syndrome diagnosis. I would start by welcoming them to the most amazing and supportive group of people they will ever meet and that they were chosen by God to receive an extra special gift! A precious baby who will not only teach you how mother or fatherhood is the most rewarding job in the world, but they will teach you how to see the good in many situations you typically wouldn’t have been able too. They will teach you how to love unconditionally. This child will change who you are, by making you a better person.
I would follow by telling them to ignore most of what they will read about on the Internet and to reach out to local organizations for support and information. Find other parents of children with Down syndrome. They will tell you about the reality of having a child with Down syndrome. They will tell you there are incredibly hard days and you will cry and worry and be scared a lot, but that you have one of the most resilient children on this planet and you won’t meet another individual who will fight harder to survive and will then teach you how to do the same.
I would introduce them to blogs and sites of moms and dads who share their stories with the world to create a better life for our children. Introduce them to things like why we are the “lucky few” and what that means! Those three chevron stripes mean so much to me and only another Down syndrome parent will be able to understand.
I rarely talk about the health complications, because you won’t know until the child is here what those will be. I will tell them to educate themselves on the health risks and complications, but these complications and risk don’t apply to every child and they more than likely will not have all of the complications. Leave that worry to God and you worry about how you’re going to handle a teething child with Down syndrome… this has not been the most fun part.
EMBRACE the diagnosis, you are the greatest advocate for your child, so learn about it, but do not let it define them or you. Your child is just a child who happens to have an extra chromosome… literally and figuratively a little something extra. Life with a child who has Down syndrome isn’t always unicorns and rainbows, but it most definitely isn’t the worst thing that could ever happen to you or them. Individuals who have Down syndrome are happy with who they are. Accept that you will have good and bad days, as you will with any child and focus on making the rest of the world happy with who they are too!