Friday, April 20, 2007

Our first few days home were, well I don't even know how to describe them. I felt like a zombie, I hadn't slept in about 4 days and was an emotional wreck. I didn't feel like doing anything with this new baby, but knew that I had to bond with her, I needed her to know that I loved her no matter what but I didn't feel like showing it. My mom kept trying to get me to just go sleep and let her do the night feedings but I refused.

I had breastfed my son and therefore was the only one that could feed him, which I actually loved because no matter who all was around I was the only one he NEEDED. I had a breast reduction 2 months before I became pregnant with Ella (again, wasn't planning on getting pregnant) so I couldn't breastfeed. It felt to me that if I didn't get up in the middle of the night to feed her I may never bond with her.

So, after days without sleep and all the stress (oh yeah I forgot to mention that my 2 1/2 year old son was a mess. I had never spent a night away from him and had just spent 3, and when I did come home I was sobbing and just a total wreck. Hunter was very angry at me, which broke my heart. He would love on the baby but would have nothing to do with me.) I felt like everyone would be better off if I would just die. I was not capable of raising a child with Down Syndrome, what did I know? Finally my mom convinced me that I needed to go to my psychiatrist and be put on a higher dose of antidepressants, I have been taking them since 2001. So, after a few days of higher doses of medication and some pills to make me sleep I was at least functioning.

I remember when ECI (Early Childhood Intervention) first came to the house. Ella was 2 weeks old and there was already therapists, they brought a video about their programs and told me to watch it when I felt like it. My mom and I watched it a couple of nights later. After, my mom asked me what I thought and I said this is not what I wanted for my life. It was so strange I just felt hopeless and like it was all a dream. People from our church would say, "God only gives special babies to special moms" and "God doesn't give you more than you can handle." As someone very new to religion quite frankly I was mad at God, he had definitely made a mistake.

I'm going to go ahead and fast forward to now. Ella is 7 months old and I can not imagine her, nor would I want her another way. I know that is a far leap and I don't really know how it happened but that is the truth. I thank God everyday for her, even though I still have the whys? Why does she have to have Down Syndrome? Why was I picked to raise her? I never thought there would come a day when I looked at my precious baby and didn't see IT. But I don't see IT, or maybe I do but have just finally accepted it. All I know is that I have a wonderful, happy, fat baby who is just Ella. So what if she isn't the baby I dreamed of, I wouldn't change one single thing about her.

I definitely have my worries about her future. But they are not what will she not be able to do, because I know that there is no limit. My worries are about the ignorant people of the world putting limits on her. I NEVER want my baby to be called names and made fun of, but I am not naive and know that it will happen. I am already so defensive, I will see people staring at her and something shifts inside of me. I want to ask them what their problem is and give them a piece of my mind. But then I stop and think for a second. Ella is the most beautiful baby I have ever seen, not that I am biased, but really she is. Not to mention that she will smile at anyone who makes contact with her and when the child smiles she glows. So, no wonder people stare at her how could they not?

Saturday, April 14, 2007

The Begining

Here is how it all started....... I became pregnant in January of 2006 which was, well unplanned. Not that my husband, Chris, and I didn't want more children, just not right then.
Right about the time I get used to the idea of having another baby, it is time to have the triple screen test that women routinely have. I really didn't give it much thought, I didn't even have this test with my first pregnancy. The day after my 26th birthday, April 27th, my OB's office called and told me that the test revealed that I had a 1 in 201 chance of having a baby with Down Syndrome. I asked what my chances are supposed to be and she said 1 in 1200, I immediately began crying. I got off the phone with her and called my husband and told him he needed to come home right now. Poor Chris had no clue what was going on and thought something had happened to our son, Hunter. He came running in and through my sobs I told him what the doctors office had said. He said "well, isn't that like a 1/2 a percent?" yeah I guess. Then he said "so what if our baby had down syndrome? will we love it any less?" Well, no. But it was still so scary, I didn't know anything about Down Syndrome.
Anyhow, about 2 weeks later we were sent to a "high risk" pregnancy place in Ft Worth. We met first with a genetic counselor who kind of explained what the test results meant. She told us that they would first be doing a level 2 ultrasound, where they look for about 10 markers that indicate Down Syndrome. Then we would have the option of having an amniocentesis, which has a 1 in 200 chance of miscarriage. My husband and I decided that maybe if the baby had a couple of markers we would do an amnio just to know for sure, we didn't even have to discuss whether we would abort or not, it was never a question we would NEVER abort.
So, we go in for this ultrasound, which I have to say looked just like another ultrasound I've ever had still couldn't tell what we were looking at, the only difference is it was performed by a doctor. The doctor told us that even "normal" babies can have some markers, after much searching he told us that our baby was a girl and that she had NO MARKERS!!!! We were so excited!! The doctor said that he would "play those odds in Vegas" and to go home and not even think about Down Syndrome. So that's what we did.
We went home and I started dreaming about my baby girl. Maybe she would be a tomboy like I was and I could coach her softball team. Maybe she would be a girly girl, I guessed I would just have to learn to play barbies. But I dreamed beyond that, her wedding and most of all her having babies of her own. My mom is a wonderful Nana, and is so close to my babies and I imagined myself as a grandmother and how great that would be. In the mean time I bought a couple of little dresses.
In June my son and I headed up to Alaska, (I'm from Fairbanks, Alaska) to visit my parents and escape the evil Texas heat. Hunter and I spent 7 wonderful weeks there. My mom and I made a quilt for my new baby girl's room and I made quilt blocks that spelled out her name E L L A. I dreamt of one day doing the same with my daughter for her baby. Hunter and I came home when I was 32 weeks, the day after we got home I had an appointment with my OB, who was on vacation, so I saw her nurse practitioner. I had a routine ultrasound to check the baby's size, and again surprisingly they found that the baby was too small for her gestational age. They estimated her to be about 3lbs. Since the doctor wasn't there they scheduled an appointment for me to come back at 34 weeks to have another ultrasound.
Well on Friday August 25th my husband was notified that he would be leaving in 2 weeks for 3 months of training and then a 12 month deployment to Baghdad. I was so upset, he had missed the birth of our first child thanks to the Air Force and was now going to miss this one too. So, we decided that the best thing for us would be to pack up our house and put everything in storage and once the baby was born the kids and I would go live with my mom in Alaska. Five days later, while packing up our house I started having some weird aching in my back. I called my OB and she said to go ahead up to the hospital and have them check me out. I called my neighbor Bonnie and asked if she could watch Hunter for a couple of hours, because I figured that I would get up to the hospital and they would laugh at me and send me home. We discovered that I was in fact having some contractions. The OB came up to the hospital and she said "you cannot have a baby today, your baby is still too small." Well, good I didn't plan on having a baby yet.
To make a long story short 8 hours later I was in the operating room getting prepped for a repeat C-section. The OB informed me that they would not show me the baby because she was going to be small and the operating room was too cold and they were planning to take her out of the room fairly quick. My husband was brought in and they started. As soon as they lifted Ella out she began screaming. It was the softest little cry I've ever heard, she sounded like a kitten. I looked at my husband and just knew everything would be okay.
Just as the OB said they took her out and I had my husband follow them. My husband came into recovery from the nursery and told me that Ella was doing great, she surprised them all and weighed in at 5lbs 10ozs, and was only requiring and oxygen hood, no tubes!! I was ecstatic!!!! I called my mom, who was waiting on pins and needles and trying to change her plane ticket so she could get to Texas sooner.
Chris had been in recovery with me for a few minutes when the attending pediatrician came in, followed by the OB. The pediatrician said that Ella was doing good but that he wanted to test for Trisomy 21. I asked him if that was because of the earlier triple screen, he said that he had never seen my file. The OB then pipes up and says to the OB "yeah, I saw it too." My heart sunk.
About an hour later I finally got to go to the nursery to see Ella. She was still under an oxygen hood and I was still laying flat from my C-section and all I saw was the side of her face. Immediately I was calmed. My baby didn't have Down Syndrome, she didn't look like everyone I had ever seen with Downs. So I was convinced that the doctors were stupid. A few hours later I went back to the nursery and held Ella for the first time, while I was holding her she yawned and then I saw IT. I can't really say what IT is but I saw it. She had Downs. I was in the hospital for 2 and a half days and about every half an hour I changed my mind, she did she didn't. My mom made it in on Friday, and she was the same way she saw it and then she didn't. The mind has a pretty powerful defense mechanism called DENIAL.
We went home on a Saturday and didn't get the test results until Tuesday. The pediatricians office called, and said that she had it. My whole world fell apart. I started crying like I have never done before. My poor son was standing there and ran to me and just held on, it was so sad. My mom called Chris at work, (he had to go back to work because he was running around getting everything ready for his deployment. We were trying to get it delayed because of everything that had happened.) he came home immediately. A couple of hours later one of Chris' superiors came to our house to let us know that his deployment was cancelled. It was almost as if they were waiting to see if Ella actually had Down Syndrome, as if someone would make this up.
And so began our life with Down Syndrome.
Sorry to make this so long, I didn't realize. Once I got started telling my story it just kind of kept coming. Promise future posts won't be so long!!!