When I was four months pregnant I started to get the very strong feeling that I was expecting a baby with Down Syndrome. No matter how I tried to shake it, explain it away, pray it away, scream it away... it never went away. This plagued me for months and months while I was expecting our second little girl. God wouldn't challenge me like that right? No... it was just me being paranoid as ever. Nothing to worry about. Stop freaking out.
I asked the Lord for peace of mind and he granted me that for the last month of my pregnancy... probably due to all of the freakin' labor I went through... it just distracted me. Then, the day I was in hard labor the feeling came back. I just had a strong feeling that I needed to be prepared for this. So, along comes Kloey Alice. It didn't take long, 3 contractions of pushing and she was here. She didn't cry and she didn't really move. I knew. I knew right then that something wasn't right. The umbilical cord was too short so they put her on my stomach, cut it, and whisked her away. I didn't get to see her face. I kept asking if she was okay and what did she look like. When I saw her I immediately knew again. The nurses and midwife assured me that she did not have it because she simply doesn't have any of the facial features of a baby with Down Syndrome. This did not ease my worries. She was different and I knew it but I so desperately wanted to take them at their word.
I worried about it all night long. Word passed through all of the nurses that I was worried about my baby having down syndrome because of this "premonition" (as they called it) that I had throughout my pregnancy. When the nurse came in the next morning she informed me that she would let the doctor know of my concerns when he came to examine her that day. She thought that Kloey did have some signs of DS but not in her face. The pediatrician came in the next day and informed me that at first he thought, "there is just no way that this is a downs baby" but after taking a closer look he thought, "I better order chromosome testing". I was expecting different news when he walked into my room that morning. Kloey was in the NICU due to high red blood cell count and low oxygen saturation. Therefore, she was not in there and I had not been able to bond with my baby whom I was feeling very distant from. As he explained to me that he wanted to get her tested and told me of all the features that she showed and all of the groups to help these children nowadays I think that I was somewhere very far away in my mind. I wouldn't cry, I told myself. I held it together as his words sort of floated above and around me but didn't actually fully penetrate me. My baby has Down Syndrome... I have a baby with Down Syndrome. What do I do? I know that the test hadn't even happened yet but once again, I already knew.
I held it together while the doctor was in the room.. but once he left the waterworks went into overload. My nurse was great. She had asked the doctor if I cried when he told me and he said, "well no, she took it quite well" and the nurse replied, "no, she waited until you left". So, in came my nurse with a reassuring smile and a friendly pat. I thought it was sweet. Of course, there was my supportive, almost nothing freaks him out husband of mine as well. Gosh that man can hold it together!
As the days went on I started to convince myself that she looked too normal to have Downs. Everyone, even the nurses and doctors kept telling me that it was a long shot. Kloey nursed like a champ right from the start, most ds babies have horrible sucking reflexes. Her heart sounded perfect, most ds babies have heart murmurs which signal heart defects and other problems. Then there is the fact that she looks completely normal. Her ears are not lower set. She has one eye that is slightly almond shaped but barely. She doesn't have a flatter face or really small features. She does have low muscle tone, a palmar crease on one of her hands, and her big toe separates from the rest of her toes. Those last two of her three features she inherited from Jordan and I. So one can see why I started to doubt my "premonition".
Kloey stayed in the NICU the entire time we were in the hospital. Seeing your baby hooked up to monitors and wires and tubes and then an iv in the head... how horrible! I was so sad for my baby. She was constantly being stuck and pricked and jabbed and prodded. I started to cherish the times that she needed to nurse. Bonding with my baby was (is) so wonderful. I started to feel connected to her. The entire time that I was pregnant with her I felt like she was a mystery and like I didn't feel connected to her the way that I should. That is not the case any longer.
On Friday, after finally having her overnight in our room for a "test run" we were going home. The test results hadn't come yet but I was thinking of other things. We were getting an oxygen saturation monitor, an apnea monitor, and going home with a tank of oxygen for our newborn baby. Talk about intimidating and scary. We are 20 minutes from going home when the phone in our room rings. I'm sitting with Kloey on the bed all snuggled in my arms. Jordan answers it and I knew that it wasn't family on the other end. Then I saw his face. I knew that it was about the test results. About 30 seconds later the nurse came in. She saw that Jordan was on the phone so she turned around and left. She came back a few minutes later and sat on the bed patiently waiting for Jordan to be done. I couldn't take it anymore so I looked at her and said, "It's about what I think it is, isn't it?". She looked at me, nodded, and said, "It was positive". I nodded, looked at my sweet, sleeping angel and lost it. How? Why? Are you serious? Now what? The first words out of my mouth were "I love you" and the first thing that I did was kiss my new baby. I remember promising in my heart that I would do EVERYTHING in my power to teach her, protect her, love her, and help her to reach her absolute FULL potential. The doctors and nurses were so great and supportive. They sent us home with a book, numbers, websites, etc. Her pediatrician takes very good care of her and shows a great amount of interest in helping us through this and giving us all of the resources that he can. He's like a big Grandpa taking care of his grandchild. That's what it feels like. He doesn't have to do all that he is doing.
Since finding out I've had many different emotions. I am surprised to see how I've reacted to my baby. Throughout my pregnancy I thought that if I had a child with this syndrome that I would feel unattached and distant. That is definitely not the case. This child is an angel. We love her so much. Kourtney loves her dearly. Our families have been wonderful in their reactions. Our mothers have been beyond wonderful in their help, understanding, and desire to learn more about their new granddaughter. We feel so blessed to be so loved. We feel so blessed that our child is so loved and accepted by our very special families. My mother has been my biggest support. Calling me three times a day, telling me of her research and finds of that day, ordering me books, and telling me that she just can't wait to meet the new special spirit of my family. How grateful I am for everyone's support and love.
As far as me.. I'm okay. I go through my moments of "What will I do when she wants to do this or that.... what do I tell her when she wants to get married... what do I do... what do I do.... what do I do...." I know that some of these children grow up to lead pretty normal lives. I do believe that Kloey's case is mild. But I do not know yet what the future has in store for her. I do know that I am going to do everything in my power to teach her the gospel and help her grow into everything that she is capable of becoming. I have two very sweet and amazing daughters. I must not forget that. And people must not think that I feel otherwise. I love my children more than life itself.
