A Day We'll Never Forget

Continued from yesterday...

Shortly after Chelsea was born we noticed that she was really sleepy. I wasn't too concerned about nursing, b/c I knew it would all work out. It was just odd that she was so sleepy. We passed her round and round and she never woke up or fussed. In fact, we didn't hear her cry the whole time we were in the hospital. That was over 48 hours! All of our family that came to visit had to wear masks b/c everyone was sick. It was just that time of year. I remember telling Ryan early in the day, "she looks funny." He didn't think that was very nice, but she was very swollen and bruised from the delivery.

It wasn't until around 4pm that the pediatrician came to the hospital to check on the new babies. I was taking a bath and feeling great. I thought to myself, I'm going to get right back into things after this one. It was my 2nd baby and I was a pro. I felt confident b/c I'd done this all before. While I was in the bath Ryan went home to shower and get some things for me. The nurse knocked on my door right after I got in and told me I had some friends here. I told her I'd be out shortly. Then she returned and told me that the pediatrician was here checking on the babies and she would want to talk to me soon. After I got out of the bath I dried off and put on my comfy red robe. I combed my hair and opened the bathroom door to see my friends. They were there waiting for me. It was two good friends I worked with. Then the dr. came into my room with the nurse and I sat on the end of the bed. They suggested my friends wait outside, and I said no, that's okay they're fine. The nurse said, actually I think it would be better for them to wait outside. Not wanting to argue with the nurse, I said okay, and told my friends I'd come get them in a minute. I knew what the dr. was going to say. I had a huge smile on my face. I was ready for her to tell me my baby looked great and that she was perfect just like she did 2 years earlier after we had our son. He was perfect and I expected nothing but perfect yet again. I didn't even notice how serious the dr. and the nurse were, I was totally clueless. The first thing she told me was probably congratulations on your new baby, but what I remember her saying first was, "I can hear a small murmur when I listen to her heart, and I think we need to look into this." She told me lots of babies are born with heart murmurs and it wasn't anything to panic about until we learn more. I was thinking to myself, okay, I can handle that, it's common, I'm sure it's nothing. Babies in our family have all been born healthy, so I'm sure Chelsea will be fine. (Can you see me still sitting there with a big smile on my face?) Of course I was worried, but the dr. sounded confident it wasn't a major defect and I needn't worry. Then she continued. Okay, I thought to myself, here's where she tells me how perfect and beautiful Chelsea is. In reality the dr. continued, "I also think we need to do some genetic testing for Down syndrome."

"HUH? DOWN WHAT?" Okay I had to have heard that wrong. "Excuse me?" She said it again, "I have reason to suspect she may have Down syndrome." I responded like one very defensive mommy, "WHY WOULD YOU THINK THAT?" I felt like she was insulting me. There was no way my baby could have Down syndrome, I am a healthy young mother, nothing like that ran in my family (hmmmmm, maybe it runs in Ryans family and I don't know?) and I exercised throughout my pregnancy, took my prenatal vitamins, how rude of her to suggest something like this. Anyways, once what she suggested settled in my post-labor brain, I began flooding her with questions:

*What does that mean? (honestly I don't remember her answer to this, I think all I heard was chromosome, blah blah genetic blah blah, chromosomes, blah testing....)
*Are you sure? no, I just see some traits that make me suspect she may have Ds
*What traits? low tone, round, flat face, protruding tongue (I was thinking, my baby's tongue isn't protruding!)
*What did I do to cause this? nothing, there's nothing you could have done, you didn't cause this, it just happens (yeh right, I thought, she's just trying to be nice to me.)

So as your reading this you may have some of the same questions I had in the beginning. It's funny how little we know about Down syndrome until we are faced with it head on. By the end of our conversation I was crying my eyes out. I asked the nurse to call my husband. I knew he was coming right back to the hospital, but I wanted her to tell him HURRY! I didn't want to tell him over the phone, but I wanted him there immediately. I couldn't believe I had to wait for him to drive the half hour from our house. Then the nurse called my mom who had not come up to the visit yet b/c she was trying to recover from a respritory infection. I knew I needed her there though. She is my rock when it comes to this stuff. She was a labor and delivery for 20 years, and I knew she'd know what to do. I could hear the whole conversation. After introducing herself, this is what I heard:

Nurse: Your daughter wants you to come up to the hosptial as soon as possible, she said she doesnt' care if you're sick.
Mom: What?! What's wrong?!
Nurse: Carey and the baby are both fine, she just wants you to come up here.
Mom: What is it? Tell me what's going on!

At this point the nurse couldn't lie to my mother so she told her the doctor's suspicions. My mom was on the way. I remember Ryan arriving at the hospital. We both just fell into each others arms and cried together. We were so confused. We watched as they took her blood and xrayed her little body to check out her heart.

Within an hour we had all of our parents in our hospital room. The room was packed. The nurse told me she was touched by the circle of support she saw in our room that night. Everyone tried to stay strong for us, but I could see the fear in their eyes. We asked the nurses lots of questions and tried to figure out why they possibly thought she had Ds. She didn't have the one line in the palm of her hand, she didn't have the fat behind her neck, she most certainly didn't look like she had Down syndrome. The round face looked just like our son's big round head. Most of the kids on my husbands side of thd family have big round heads. Ryan and I asked our mothers to stay with us a little longer at the hospital that night. I cried to my mother and she just hugged me and told me it would be fine. She told me how beautiful my new baby was. I remember telling her over and over again, "I can't do this." She replied every time, "yes you can." After our mother's left that night the room was dark and quiet. Ryan and I were being tested. Do we tell each other what we're really feeling? I was brutally honest with Ryan that night about my fears. He assured me we would handle whatever we were faced with, and he also didn't want us to put a lot of energy into worrying when we didn't even know for sure. He was right. Let's just wait and see.

I remember a lot of people wanting to come visit. I hadn't told anyone about the Ds. I was so embarassed I did't want anyone to know. I didn't want to face anyone. I remember a Jazzercise instructor that I worked with came up later that night with a 6-pack of beer. She was joking around like always, she opened up a beer, handed me one, and I was completely uncomfortable. I just wanted everyone that came to visit to leave. I didn't want anyone to look at my baby. I felt so ashamed.

The next few days and weeks are a fog to me. I remember crying . . . a lot.

My babies:

Ryan's mom:

My mom:

Daddy and his little girl:


To be continued...