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! However, it felt like fourteen hours! Had I not been so stubborn to get the epidural, I probably wouldn’t 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 with me 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.
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 wouldn’t have changed anything. 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 dealt this card. It’s breathtaking–and not in the good way you’re used to hearing about.
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 in 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 I wouldn’t be able to forget about it.
Tessa was hooked up to breathing tubes and a pulse oximeter. That particular pulse oximeter was without a doubt the most nerve-wracking machine in the world. Since it was hardly getting a clear reading, it would constantly sound off all day and it made me think something was wrong with her. Even though the nurse would come in and check, it didn’t make it any easier the next time it went off. 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 by Thursday. 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 machine 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.
Thursday came around and we were discharged from the hospital. We would finally take Tessa home with us. We still didn’t know the result of the test, but we were supposed to know by the next morning. Wouldn’t you know it, I got a call on Thursday night from the doctor and she informed me that we wouldn’t know the result for 10-20 days from the day of birth. She was misled on information from a lab tech at the hospital—why not! So again, we waited…
Monday afternoon came, exactly one week after we welcomed Tessa, and 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. 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. At this point, I was completely overwhelmed and overcome with emotion. I don’t really remember everything that the doctor said because I was staring at Tessa and crying so hard. I had so many questions and I couldn’t even ask them.
I would like to say that the fact that there was nothing we could have done to prevent this makes it easier but it doesn’t. The fact that we didn’t cause this due to any of our own actions doesn’t make it any easier. When our families say to us, this doesn’t matter and we will love her just the same—still doesn’t make it any easier. Let’s be honest, why doesn’t this matter—of course it matters! This was not part of the plan. This is not what we set out for in our journey to starting a family. Down Syndrome is not prejudiced and in our case, like many others, it was completely random. But, I did everything right. I took care of myself. How in the world does this happen? We had no idea how we were supposed to feel. On one hand, we had this amazing baby girl who we couldn’t get enough of. On the other, there was the heaviness of the Down Syndrome diagnosis that seemed to cloud our heads. At first, there was nothing that anyone can say to us that would help make this less hard. The pain of the reality of it was quite fresh. There were times when I felt so strong and ready to give her the best life that I could, and then there were times that I couldn’t even pick myself up and go on with my day.
We don’t know what the road ahead of her is and where it will lead her. All I knew is that I would have given anything for her to never feel an ounce of pain, and I wanted to protect her from all of the bad that I thought might come with this. I remember feeling so guilty at times because I let my emotions get the best of me and that was so unfair to her. After all, this wasn’t about me and my husband. This was about Tessa. The only thing I could think was that she was meant to be with us and we were meant to be with her.
So many thoughts came to my mind…my first thoughts were that I never wanted her to be a “diagnosis” and I never wanted this to be what would define her. I never wanted anyone to ever tell her that she wouldn’t be able to do something. I never wanted this to hold her back from doing whatever it is she was meant to do. I kept thinking that the first thing everyone would think when they’d see her was “that little girl has Downs.” I wondered about when she’d get in school, how the kids would treat her. It was hard because I was reminded of the kids I knew when I was growing up that had Down Syndrome. But if I sat here and jotted down every thought or fear or concern, it would literally take page after page after page. And honestly, trying to hash out every situation that will confront her in life is pointless because it wasn’t going to change anything or make it go away. With that came the fear of how this will affect our marriage. I’d like to think that it will have no affect on us. Realistically, however, I knew that it may challenge us along the way. For a week, I asked Dan everyday if we would be okay. He kept telling me we would be just fine, but there was a part of me that wondered. I was beating his emotion and feelings out of him which was terrible. He’s not a “verbalizer.” I don’t know what it was I was looking to hear from him. I was hoping that he’d say, “wake up babe, you’re having a bad dream,” but I knew that would never happen.
I know that you’re probably thinking, “how can she say those things,” ”how can she feel that way,” but trust me these feelings are raw and real and no matter how much you want them to go away, they don’t.
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 had come to an end. I thanked God for our amazing children. 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. I cannot lie about that. Once we were settled, we realized the love we had for this little girl was greater than anything we had ever experienced.
Today, she still holds the key to my heart and she knows just when to use it. She smiles every time she sleeps and makes the cutest noises when she’s eating. I could touch her little nose and toes all day. Every time I put my finger by her hand, she wraps those little fingers right around and holds tight. She’s such an unbelievably good baby so we are pretty spoiled. I love how everything in my house smells like a baby. I love the way her face lights up when she’s cuddling with her daddy and hears the sound of his voice. I could watch her sleep all day and night because she is so peaceful. Every time she cries, we run to the rescue to make it all better. I never want to lose these feelings. Trying to find the joy in all of this has been so hard but when I really look, it’s the little things she does that warms my soul and lets me know that everything will be just fine. I fall in love with her a little more each time I see her and hold her. How couldn’t I? 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. We will be just fine.
“…I don’t let my fears of tomorrow rob me from my joys of today…”
Quoted from www.kellehampton.com
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.