Everlly Brightens the World- A Prenatal Diagnosis Story

I was 26 years old when we found out Everlly’s possible diagnosis of her having Down syndrome. It was at our 20 week ultrasound. Scott and I were so giddy to see our baby. Just the two of us seeing our little babe swimming around on the screen.

We both wanted to not know if we were having a boy or girl. The ultrasound technician was actually in training and she was taking a bit longer than we expected, which we just chalked it up to her being new. But, still she was very quiet and didn’t say too much.

We finished up and headed to see my doctor. I remember both of us were goofing around and laughing hysterically. In came my doctor. She proceeded to tell us that our baby had markings for Down syndrome. At that point I seemed to just go into a tunnel. I remember thinking…we are young and this is our first baby, it’s not supposed to be like this. That’s when my doctor said we had to consider our “options”. Both of us, pretty much at the same time, stated we weren’t having an abortion.

I know it was her job to give us an option, but I do hold a bit of a grudge against her to this day. Needless to say, I never picked her to be my doctor for our next 3 babies.

As we left the doctor’s office, I was crying, crying so hard I was leaning up against the clinic walls, walking/stumbling, my husband trying to hold me up as best he could. Then getting into the car. We both didn’t go into work the next day. We did tell our closest family members and friends. They supported us, which we are very lucky to have those supportive people in our lives. I guess when I look back on it, I’m glad we found out when we did, so we could prepare as best we could for her arrival. Of course, when going back to work, I turned in some appointments I had to get off of work. And my boss came up to me, stating that you don’t ‘have’ that many appointments when you’re pregnant.

And the words came out of my mouth, “There’s something wrong with my baby.”

Long story short, I never had a problem getting time off work after that. We did have a lot of ultrasounds to keep watch on the PDA in her heart, possible hydrocephalus and her growth and development. We saw a genetics doctor as well.  We were both coming to terms with our child having Down syndrome. And she just had no bedside manner. Sounding like a robot she said things like, “Your baby could die. Your baby could die after it’s born. Your baby could possibly never walk or talk.” Later though at a follow-up appointment with the same genetics doctor, she was in awe of how Everlly was developing. (read about that here)

 

We spent the remaining months of my pregnancy with more appointments and working on our baby’s nursery. Honestly though, when I look back on it all, I wish I prepared a little more, read a few books, reached out for help from others that went through the same thing. I could have been in denial and was hoping for a different outcome in the end. Which I do feel guilty now for feeling that way.

 

I started to go into early labor June 16. I was working at a local newspaper as a graphic designer and as I worked I timed my contractions. I still went to work on June 17, but when I left work my contractions were getting much closer together. I knew I wanted to labor at home as much as I could handle it. We finally decided to leave for the hospital around 11 p.m. in the middle of a thunderstorm. Labor was intense and I finally gave in and got the epidural. I pushed for 3 long hours with her. I was exhausted and Scott was so very supportive, but annoying me all at the same time…I actually did end up slapping him, by accident, because I needed him to just stop talking for a bit! My doctor was very patient with me.

Finally at 10:43 a.m. on June 18 she entered the world! It was the first time I saw my husband cry. He was so proud and so happy!

The nurse placed her in my arms and I looked up at Scott and asked if he thought she looked like she had Down syndrome. Another thing I feel guilty for saying. When it was time to go to my room, I was being pushed out in a wheelchair and a nurse placed her hand on my shoulder and said, “I’m so sorry!” Right then, I had a wave of emotion come over me and I thought to myself, why should she feel sorry for me? I’m going to be okay…WE are going to be okay! I’ve never wanted anyone’s pity, because she was given to Scott and I for a reason. She is a gift from God.

 

In the days that followed, we encountered a bad case of jaundice and she was very dehydrated. I wanted so badly to nurse her and she wasn’t getting enough milk since she wasn’t feeding properly. She was admitted back to the hospital for a day and then we were sent home with a biliblanket. We adjusted to life with our baby girl. We heard our fair share of hurtful comments, but with the bad, comes the good. Like I said, we had great support from family and friends.

As time went on and Everlly grew, the diagnosis of her having Down syndrome wasn’t such a huge deal. Yes, in fact, she is diagnosed with Down syndrome, but it sure doesn’t define her. She’s overcome a lot of obstacles. And when I was feeling sad because other babies her age were sprouting and doing the things that a typically developing baby was ‘supposed’ to do, Scott and her Birth to Three occupational therapists were there to tell me she WILL do it, just give her time. And sure enough, she accomplished it. Everlly never crawled, instead she scooted on her butt! It was cute, real cute!! She didn’t walk until she was 2.5 years old. Her daddy even built her parallel bars made out of PVC pipe. (see those here)

 

So far we’ve been lucky health wise with her. Her PDA closed on it’s own. When she was 6 months old she got pneumonia and they found a diaphragmatic hernia on her chest x-ray. She had surgery for that at 7 months old and shortly after that I stopped nursing her. I was thankful I got to give her breastmilk for that long. She’s also had her adenoids removed and a few years after that they took out her tonsils.

 

This year she started first grade. She’s reading, writing and drawing pictures. She’s growing leaps and bounds! We are so proud of her. She has such a silly personality! She can be a bit dramatic as well. My sister laughs at how Everlly likes to throw in the conversation “REALLY?!” and there’s so much spunk and attitude behind that when she says it! This coming June she’ll be 8 years old…I wonder how 8 years have passed by so quickly. From a time when I thought she’d never walk and now she runs! She loves to shop, play pretend restaurant, wants to take a shower without any help and when I try to help her with something, I hear, “mom, I got it!” She’s a very independent young lady. I’ll also add she’s a great big sister and she has such a big heart!

 

I’m sure most if the parents that read this have kids that have seen Trolls and it’s been on repeat for like the 10 millionth time, am I right?! Well, as I’m writing up Everlly’s story, Everlly and Bayha are at school and I have Trolls on for my son, Callyn. A little distraction so I can write this and maybe have a few less interruptions than usual. In between writing and then making lunch for him and feeding lunch to Millyr, that song that Poppy sings as she’s on her journey to Bergen Town to save all her friends, starting off like, “I really hope I can do it…” And then another part that goes, “Hey! I’m not giving up today, there’s nothing getting in my way and if you knock knock me over, I will get back up again. Oh! If something goes a little wrong, well you can go ahead and bring it on…”

I have heard that song many many times, but when I’m thinking of Everlly’s story and then it’s playing in the background, it made me think how that song resonates with Everlly and our family. Sometimes life doesn’t always work out how you envision, but then you decide to pick yourself back up and keep on going. And yeah, you’re going to hit a few bumps along the way, but just don’t give up! Everlly has shown us a lot in her almost 8 years as her parents and she’s going to show us a lot more as she grows and becomes even more independent…so I guess you could say, we’re not giving up today or any other day for that matter!

My name is Jami Kloth. I live in Colby, Wisconsin, along with my husband, Scott, and our 4 children, Everlly is 7, Bayha, is 4, Callyn is 2 and our newest addition, Millyr is 8 months old. And one of our daughters, Everlly, was born with that extra special chromosome. I’m a lover of cooking, which has taken me a few years to come to actually love it. My husband says he enjoys eating a variety of food now besides the spaghetti I used to make in our earlier years as a married couple. I also love photography and of course taking pictures of my kiddos. I have been a stay at home mom for almost 4 years.

Check out Jamie’s blog and be sure to follow Jamie and Everlly on Instagram @4ever_bay_call_mill