I remember the night like it was yesterday–December 19, 2010. Ironically, I was watching Knocked Up at home by myself. The week before I took a pregnancy test and it came back negative. A week later though, I still thought something was up. Feeling inspired by the movie, I went into the bathroom and took another pregnancy test. I was expecting another “negative” result and took the test to just ease my mind. “Positive.” I was stunned! Wait…what?! I was going to be a mama. Immediately I held my tummy and cried so many tears of joy! My husband wasn’t home so I sent him a picture of the test and said to call me ASAP! He hadn’t responded yet and I needed to tell someone. I sent the same message to my sister. She called me right away and I was thrilled to share my news. Soon enough, Dan came home and rushed into the house. I looked at him and ran to him with tears in my eyes and said, “You’re going to be a daddy!” Still not convinced enough, I made him take me to the store where I bought four more pregnancy tests to take. Shocker, they all came back positive. (I also made him take me to Culver’s so I could get myself a large hot fudge sundae to celebrate; as if my 3.5 week old fetus had been giving me such strong cravings for ice cream already.) So many thoughts raced through my head as I thought about how our much lives were about to change. I couldn’t believe there was a little life inside of me, and I felt so proud of what we had done.
The next nine months were an incredible journey and what became of it all has certainly changed our lives forever. Here is our story…
Our beautiful daughter Tessa Jo Carey was born on Monday, August 15, 2011 at 12:34 p.m. She weighed 6 pounds, 2 ounces and was 18 ½ inches long. I was 38 weeks pregnant when I woke up on late that Sunday night at 11:45 with strong contractions that were ten minutes apart. By the time we got to Dodgeville about an hour later, they were between two and three minutes apart…and mean! Once they monitored us for another hour, we were admitted to the hospital and told we would not be sent home without a baby in our arms. I remember feeling so excited…and nervous…and scared…and anxious. Mostly, I was so ready to meet our little girl and start our life together! It was finally time and there was no turning back.
My contractions were a little too intense and I was slowly progressing after the narcotics. After about eleven hours of mildly stagnant labor, I decided it was time for an epidural. Getting the epidural wasn’t as bad as I thought it would be, especially given my unbelievable fear of needles. At one point, my blood pressure dropped pretty low along with Tessa’s heart rate. I didn’t know what was going on, but I knew it was serious. Suddenly, the nurses and the doctor were scrambling around the room and I was on oxygen. I remember looking at my husband Dan behind all the craziness who looked terrified and had tears in his eyes. He just kept telling me everything would be okay. Eventually they were able to get my blood pressure back to normal and Tessa’s heart rate came back up a bit. It was so scary to not know what was going on as they couldn’t explain everything to you as this was going on because they needed to focus on returning things to normal. By now they had hooked up an electronic fetal monitor to my baby. Her heart rate had been relatively low the last month or so of my pregnancy. My doctor had commented on it a couple of times, but she never felt there was any reason for concern and I guess we didn’t either.
Once we were complete, I only pushed for fourteen minutes even though it felt like fourteen hours! Had I not been so stubborn to get the epidural, I probably would not have had a twelve and half hour labor. Once Tessa came out, I only saw her for a second and they whisked her away and immediately put her on oxygen. Dan cut her cord. I finally heard her first little cries and it melted my heart. I kept wondering when I would get to meet her and why she wasn’t in my arms yet. There was a lot of commotion in the room. I remember feeling so confused, and proud, and anxious, and curious.
The new dad was taking pictures and admiring his beautiful baby, but me…I waited.
Seconds felt like hours and all I wanted to do was jump out of that bed and hold her in my arms. Yet, I still waited…
About thirty minutes later, they brought her over and placed her on my chest. I remember crying so hard and thanking God for giving me my beautiful baby girl. Dan swore before we had her that her name would be Tessa, but I wasn’t so sure. I needed to see her. I needed to place a name on her that would fit her sweet and infantile personality. I needed to know that the name we would give her would represent exactly who she was. Tessa. It was a perfect fit. Dan was right all along because he just knew that Tessa would suit her well long before he had even met her.
She had long dark hair, juicy red lips, and the bluest eyes I had ever seen. She was gorgeous. We kept looking at her and trying to figure out who she looked like. Her face was pretty swollen from the delivery so it was hard to figure out. We commented on her nose and whose it was and it was at that point that we were delivered the hardest news we have ever heard in our entire lives…My doctor said to us, “I need to tell you something—I’m over 90% sure your daughter has Down Syndrome.”
“No…” I said, “No she doesn’t. How sure are you? You’re wrong!”
“Yes, I could be wrong,” she said, “but she is exhibiting the typical traits associated with Down Syndrome.”
No, she was wrong. This was my moment, my day. I had so long dreamt of this day and how it would all go. I would have a flawless delivery and my daughter would be placed on my chest and melt on to her mama. She would wrap her fingers around mine and bat her little eyes with innocence exploring the new world around her.
But it did not happen quite that way.
I watched my husband fall into the couch. I felt lifeless holding our daughter. My tears of joy over having my daughter finally in my arms were immediately turned to tears of sadness and despair as I was trying to process this. I literally just gave birth to her! My heart broke into thousands of tiny pieces and I fell apart with my husband. Since we decided not to do the Amniocentesis at 20 weeks, we were totally unprepared for this. Our decision to not do it was based on the fact that even if something were to come back from it, we vowed to never change a thing. I had heard so many horror stories about this test. We decided to let fate play its part. I don’t think I will ever be able to describe that feeling and those emotions when the cards we layed out. It’s breathtaking–yet not typically speaking.
Our doctor listed her wide set, almond shaped eyes, small nose, low muscle tone, and a slight single palmar crease in her hand. To us, she was the most beautiful baby we had ever seen. I almost felt offended when she listed the characteristics. So she has almond eyes–they’re gorgeous. I didn’t see a crease in her hand. Her nose was a little button and she was as strong as ever to me.
But then, it was hit me like a punch to the face…I knew. I knew she was right. Doctors don’t just guess on things like this–they know. I tried to convince myself it wasn’t real, but I knew. I never admitted that to a single person, not even to Dan.
They would have to send in her cord blood for testing which we were told would take a day or two. Well, everyday we would sit in the hospital and wait to hear and everyday they would push it back a day. Sitting in the hospital for four days and not knowing the result of the test was pretty awful. Not only were we new parents to this little girl, but we were trying to face this situation without any confirmation. I cried most of every day and night. I remember sitting in the hospital room, feeling the pain in the pit of my stomach coming on and knowing that I would be crying uncontrollably within seconds and there was nothing I could do to stop it. I refused to sleep and I didn’t want to eat. I couldn’t get my mind off of anything. We felt so alone and that no one could ever understand what it is we were going through. I know my eyes have never been so swollen and blood shot. I just wanted to be home with my new family and forget about it all; except, we wouldn’t be able to go home until Tessa was completely weaned from the breathing tubes. And even then I wouldn’t be able to forget about any of it.
Tessa was hooked up to breathing tubes and a pulse oximeter. Her lungs were not ready yet to be on room air alone and it took the help of a respiratory therapist, high flow oxygen, and tubes shoved down her nose to clean out her lungs to eventually wean her off the breathing tubes a few days later. I left the room when they were cleaning out her lungs because I knew I couldn’t handle watching it. As if our little princess hadn’t been through enough yet. Everything they did worked though. We watched the pulse ox as they finally took off the breathing tubes and we witnessed our little fighter get stronger by the hour as she breathed on her own into the next day. She needed to be on room air completely unassisted for at least twelve hours and they would spot check her from time to time. Every time they came in to do her check, Dan and I were our own little cheering section.
On our fourth day in the hospital, we were discharged. We would finally take Tessa home with us. The test result was still unknown, and we wouldn’t find out for another week.
Exactly one week after we welcomed Tessa, I received the phone call stating that the results were in and we needed to meet with our doctor that afternoon. This was it. This is the call that would determine our future. My nerves were out of control and I wanted to throw up all day. Dan and I both stayed as busy as we could through the day until it came time to drive to the doctor’s office. With a glimmer of hope still out there, I tried to stay as optimistic as I could. Although, I think it was more wishful thinking because in my head I already knew what the result was going to be and I didn’t want to finally confront it. “The test result came back positive,” she said.
It was officially the hardest day of our lives. I had a week to prepare myself for this, but let me tell you—you can’t prepare yourself for that kind of news even though I knew the likelihood of the outcome. I just kept looking at my baby and telling her how much I loved her. I showered her with kisses, I held her tight, I promised her that I would always love her and that I would give her every opportunity in the world. We promised her that we would never let her down. I was overwhelmed, grief stricken and drowning in my emotions.
Then I remembered. Casin. How would we ever tell Casin. He was so excited to be a big brother. How could we hold it together around him long enough to mask how we were feeling? One of the greater moments was watching Casin hold his baby sister for the first time. He looked at her without judgment and held her and kissed her so many times on the forehead and loved her with all he had. It was such a beautiful time. Watching him become a big brother was so reassuring at a time when we thought our world was crumbling. God is good…real good. He looked at her the way I should have been from the moment I learned about her Down Syndrome. His face was beaming with pride!
Hearing that it would get easier in time seemed so out of reach. Getting over the lingering pain took time. The heartache exists only faintly on bad days. Once we were settled, we realized the love we had for this little girl was greater than anything we had ever experienced.
From that day forward, I dedicated my life to Tessa. The guilt slowly left and each passing day that was filled with worry and sadness faded like bruises over time. I mourned for the child I was supposed to have until I understood that Tessa is the child I was supposed to have.
I recalled how I handled myself after she was born and after her diagnosis. Although everyone said, “it’s normal,” and “explore your feelings,” I felt terrible. Because I didn’t know. I had no idea my life would change for the better. I didn’t know how my heart would swell when I would look at her or how her smile would make me cry. I didn’t know her milestones would teach me how to appreciate the beauty in each day. I didn’t know because I knew nothing about Down syndrome.
I don’t regret the road to getting “there.” If we ignored every emotion along the way, we would have never made it.
Today, she still holds the key to my heart and she knows just when to use it. Her daddy is her whole world. Her brother makes her laugh. Her little sister is her best friend. As for mama, well I hope I inspire her to embrace her beauty, her accomplishments, and even her struggles along the way. She’s our little Tessa Bug. Our Buggy. Our Silly Head. She has big things to do in this world and she was sent to us to prepare for whatever it is she WILL do.
This is it. This is our life with Tessa.
We want to thank all of our family and friends who helped us through the first few hard times and surrounding us all with the love and support that brought us the strength to share our story.
We also want to thank our amazing doctor who was by our side, answering the tough questions and starting us on our path. Also, a big thanks to the nurses and CNA’s at our hospital. Those ladies are truly angels here on earth.
Thanks for reading. I invite you to follow us as we share our journey with Tessa.