Elijah's story

Pregnancy suited me. I'm not saying this to brag. It was just one of those lucky things. No significant morning sickness (some light quesiness for a couple of weeks), no heartburn, limited weight gain, good energy-and since it was my second time around, I was feeling confident & positive that everything would be great. But, Charles and I had the "talk" anyway. The talk where we discussed prenatal testing and what we would do if there was anything wrong with the baby. We came to the same conclusion as we did the first time: we couldn't see ourselves terminating a pregnancy, so we wouldn't do any prenatal testing. Besides, what if we found something out-wouldn't we just be stressed and worried the rest of the pregnancy? Wouldn't that be bad for the baby and for me anyway? So, we thought we would pass...

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At my 16 week appointment with The-World's-Best-OB-GYN, Dr. Kim, she asked if I would be doing any prenatal testing. I said no, that we hadn't done any with Christian and decided to pass again. She said, "That's fine. I'm okay with whatever you decide. You could consider the AFP blood test, since you're a couple of years older, though. It's just a blood test, and then you could just rule it out." I found myself responding, "Yeah, maybe I will. It's just a blood test." It is strange to me that I responded this way, because I had been specifically opposed to doing the AFP because of the number of false positives associated with the test. But, somehow (or rather someONE) seemed to nudge me with Dr. Kim's suggestion. I waltzed on in to the lab to do the blood test about a week later, and skipped out without a second thought.

It must have been about a week or so later, I was on a break between teaching ballet classes when I got a message from Dr. Kim. It was actually DR. KIM, herself, leaving me the message that she had my results of the AFP test. I got freaked. Why was Dr. Kim calling me and not her nurse??? I quickly called back and was put right through to Dr. Kim (freaking escalates.) Dr. Kim was not her typical light and friendly self. She said, "Jennifer, the results of your AFP blood test came back positive." Then she said, "Here...let me just read you what they say: Your odds of having a baby with Down syndrome are 1 in 10." I interrupted, "One in TEN???!!!" I really thought that I had misheard her. She confirmed and then went on to say that my odds were elevated for Trisomy 18 also, 1 in 480. I immediately discarded those odds, because they just seemed too high of a number, but 1 in 10???!!! I asked how I was going to find out, how I could get more information. That there was no way I could just take the news of "1 in 10" and go on about my merry way. She assured me that she could try and get me in to see a Perinatologist (a high risk Doctor) as soon as possible. (We were about to head into Thanksgiving weekend.) She called me back about an hour later (during which time I was trying to continue teaching my ballet class, but instead was mostly focused on trying not to cry in front of the girls. I'm sure I looked like a deer in headlights to them- normally, I am all smiles and humor- but I could barely see straight.) Dr. Kim successfully got me in to see a Doctor in Ventura the very next day. It was about an hour drive, but I would have driven to Eygpt to get a little piece of mind. I told Dr. Kim that I wanted to avoid doing an amniocentesis, and hoped that a thorough ultrasound would give us more information. I asked, "I know an ultrasound won't be conclusive, but will I get more information as a result of that?" She said, "Absolutely."

I broke down crying and told one of my co-workers that there might be something wrong with the baby, that I was going in to see a specialist in the morning and was there any way she could cover my classes? I work for the most amazing dance studio, with some of the most talented and warm hearted people you will ever meet. They completely went to bat for me, rearranged things at the drop of a hat, and told me to go home. ...And good luck. Everyone would be praying that everything is alright. I immediately called Charles...and then my Mom. There was no way that Charles could get out of work before a holiday weekend- in fact, he was already going to be short staffed for the classes he was set to teach. So, my Mom volunteered to come with me and hold my hand. I tried to tell myself that everything was going to be fine. But, I couldn't stop running the numbers in my head. 1 in 10. 1 in 10. Charles pointed out that 1 in 10 is still a 90% chance that everything was going to be fine. I Googled statistics. I Googled AFP Blood tests. I Googled "false positives" (over 80%) for AFP Blood tests. I Googled Down Syndrome. Then, I vowed to not Google Down Syndrome, because I didn't want to think about that. I barely slept.

My Mom and I drove down to Ventura early the next morning and got to my appointment about 45 minutes early. It was in a run down building and the waiting room was bleak. I thought that maybe it had been a tacky hair salon at some point. I don't know, it just had that look. We waited 2 and a half hours before being called in to see the genetic counselor. I didn't really catch her name because I was in a fog (although her name is now forever emblazened on my brain, due to the news she would break a couple of weeks later). We talked about the Triple screen test I had done and how it is just a diagnostic test, not a diagnosis. We talked about history of Down syndrome in my family (turns out both of my parents had a cousin with Down syndrome. I sort of wanted to say, "Hello??!! Why didn't I know this before???" Even though it's not as though I would have "passed" on having kids. And Down syndrome is not hereditary anyway, so why was I having this conversation in my head?) The genetic counselor assured me that the ultrasound could show certain markers for Down syndrome, but that the only way to know for sure would be with an amniocentesis. However, the ultrasound could at least give me enough information to decide if I wanted to proceed with the amnio. I felt somewhat better after our conversation.

We waited another half an hour before we were called into the ultrasound room. A dark-haired female ultrasound tech asked a few questions, then ran some cold gel onto my stomach and began the ultrasound. She said next to nothing. Every once in awhile she would say, "Here's the cerebellum." Silence. "The spinal cord." Silence. I was getting frustrated. With my ultrasound for Christian, the ultrasound tech explained everything we were looking at. And he said, "Perfect" alot. I loved that he said "Perfect". This ultrasound tech said...nothing. So I asked: "Is there a nasal bone?" "Yes, I see a nasal bone." (I had read that in Ds the nasal bone is often missing or very small.) She didn't elaborate. "How does the neck look?" "The neck looks fine." (Supposedly there are more neck folds on a baby with Ds.) Then, I got a view I had seen before...the ultrasound tech was silent...I said, "Umm....am I having a boy?" She said, (flatly) "Wow, you're good. Yes, it is a boy." My Mom and I were thrilled, but the tension of the moment kind of robbed us a little. The ultrasound tech wrote on the picture: BOY!!!! I secretly gave a sarcastic laugh. It would have been nice if her tone of voice had even give me even one! Then the doctor came in. I will call him Dr. Ass face No-Bedside-Manner, or NBM for short. Maybe it wasn't his first sentence, but it was close...he said, (flatly) "You can't know anything about Down syndrome from an ultrasound." Great. So, I was going to have to get really comfortable with uncomfortable, or I was going to have to cave and have the risky amnio. I had the amnio. He inserted a long, thick needle in my belly, watched the ultrasound monitor to make sure he wasn't near the baby, withdrew some fluid, and told me we would have a conclusive result, yes or no within two weeks. Then, he went on to say that they would call me with the results, but if they were inconclusive, I may have to come in to have them read to me. I said, "Didn't you just say that an amnio would produce conclusive yes or no results?" Sigh. This was how it went. I was going to get ZERO comfort out of this man, at any cost. My Mom and I got back in the car and decided to stop for some lunch. We drove about 4 blocks and I had my Mom pull the car over. I opened my door and threw up on the side of the road.

The next two weeks were about the most torturous of my life. I tried so hard not to think about Down syndrome. I prayed, I talked to friends and family. I took comfort in the stories of so many friends who have had a false positive on the AFP blood test...but, none of them had odds as high as mine. I tried to believe everything would be okay, but I really didn't know what I felt or what I believed. I had given myself so much information from the doctors and on the internet and from friends, that my head was spinning. On Friday, December 4th, 2009 I got "the call". (I also describe it in this post here.) I was running late and trying to get myself and Christian out the door for our morning workout. A call came in from an unknown caller. I answered. A bubbly voice on the other end said, "May I speak to Jennifer?" "This is Jennifer." "Hi, Jennifer, this is Megan calling from Dr. NBM's office. I have the results from your amnio and unfortunately your baby does have Down syndrome." Silence. She said, "So, do you have any questions for me or would you like to come in to the office?" My heart had stopped, the blood felt like it was draining to my feet and I started pacing. Fast. I don't know why, but I felt that if I stopped pacing I might collapse instead. So I paced. And I said, "Ummm.......................I think I need to talk to my family. I'll call you back." That was last contact I would ever have with that Doctor's office.

Still pacing, I tried to call Charles. Voice message. More pacing. I tried to call my Mom. Voice message. Now I was starting to lose it. I was crying hysterically when I finally reached my sister, Tricia. I could barely get the words out. "The baby has Down syndrome." Without missing a beat, my sister said, "Jen it's okay!" I screamed, "No! It is NOT OKAY!!!!!" Tricia started crying, "It IS okay, Jen. It is okay. Children with Down syndrome are wonderful kids." I cried, "How am I going to do this?" Although I can't remember her exact words, my sister reminded me that God was in charge and that we weren't alone. I know that this is true, but I didn't really want to hear about God at that moment. At that moment I was pissed at God. I wanted my Mom. I told Tricia, "I can't reach Mom." She said, "It's ok. She's here. We're on our way to you." While I was pacing and waiting for my Mom and sister, I got a call from Dr. Kim. "How are you?" She asked. "Well, I'm not so good. I just got my amnio results and the baby has Down syndrome," I was crying through my words. "I know," she said "The results just came across my desk and I called you right away. Everything is going to be okay, Jennifer." I asked her if she had delivered babies with Ds before. She said she had and that many do very well and some do not, depending mostly on heart defects. She had one baby girl who had about a dozen surgeries within the first week of life but ultimately passed away before she was a month old. It was really hard to hear this, but I appreciated her candor, because I felt that I could trust what she told me. She would be honest with me, no matter what. I told her about my horrible experience with the Perinatologist and that I wasn't going back to him. Another Doctor had been recommended by a handful of friends and did she know him? She knew his reputation and thought it was a good idea for me to call him right away. The first thing we would need to do was to get an idea of how the baby was developing. I called the new Perinatologist's office, crying, and explained the diagnosis I had been given. The nurse said that the Doctor was supposed to be going on vacation for 3 weeks, but that when she shared my diagnosis with him he wanted to see me before he left. I liked him already. By the time that Charles called me back, I had regained a little composure, but was still crying. I think he asked if an amnio was 100%. I said that basically, it was. He got off work early and headed home. Charles didn't cry at first. I think it took a little while to sink in. He kind of just mentioned that our lives would be very different now, but that this was our little baby. Then the tears came. I can count on one hand the number of times I've seen Charles cry in 10 years, but I'm glad he did, because it really seemed like he was processing it all- and I was glad not to be the only bawling mess in our household.

I decided that the first thing we should do is tell everyone we know the news. I needed to get it out. It needed to not be some shameful secret. And I needed support. Badly. Everytime I called a friend or a family member, I tried so hard to say the words, "Our baby has Down syndrome" without crying...but that didn't work. I think I must have told 50 people before I was able to choke back the tears. With each time I said the words, they lost a little bit of their scariness. Friends and family also began to share their experiences with kids and adults with Down syndrome and it was always something good or touching. I know it's a stereotype to say that all kids with Ds are loving or sweet, but it was nice to hear that at the time. ...And stereotypes usually exist for a reason, right? Maybe our baby would fit the stereotypical mold of being sweet and affectionate. There are certainly worse things. But, first we had to see what lie in store for our baby, medically. Charles and I had another talk: what would we do if the prognosis was grim? We knew we couldn't decide fully until something like that became a reality, but we decided that I would still carry to term (if that was what happened) but that we wouldn't intervene with surgery upon surgery. Luckily, at our first appointment with the Perinatologist we got great news! Everything seemed to be developing as it should. He didn't see any signs of heart defects or anything else. With each passing appointment we held our breath, but continued to get good news. Every once in awhile a potential issue would arise, but then by the next appointment, it had resolved itself.

I carried our little Peanut to term, and just as the Perinatologist predicted, he came just a little early- 2 and a half weeks early. The day after I finished work for "maternity leave" and one week after we finally decided on his name: Elijah Patrick. My labor was a really natural progression, and just as I had prayed, I was able to have him completely naturally with no epidural. It was truly the most amazing and beautiful experience I have ever had. It's not possible for every woman to have a natural childbirth (it wasn't for me with my firstborn), so I felt extremely blessed by that experience. I think that God made sure I got that experience, because immediately after birth, Elijah was whisked away to the NICU for low oxygen saturation. The doctors all assured me that it was a transitional issue, but it seems like once you're in the NICU, then there are a whole lot of additional protocol hoops to jump through. I was discharged 4 days before my baby and it was one of the worst, most empty experiences I have had. I am still feeling a lot of bitterness toward our NICU experience, but I hope in time I won't feel so robbed of that first week. (To read my experience of giving birth and the NICU, click here.)

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Elijah is home and happy now. He is a beautiful baby. He's mostly very content and we are loving getting to know him and excited to see his personality develop. I've come a long way from the emotions I felt immediately after that phone call in December. That call that I thought would change my life (and I hesitate to say) for the worse couldn't be further from the truth. And this is just the beginning. I don't cry anymore when I say Down syndrome...and I say it a lot. Saying the words make it more real and so much less scary for me. It's only a small part of Elijah's story. His story is one that will unfold over time, and now I feel lucky to get to be a part of that.

And he lived happily ever after?

The End. Beginning.

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