Actual Date: November 29, 2010: So after a relaxing & enjoyable Thanksgiving with my brother & sister, We had to go back to work the following Monday. Bryce stayed home from school with everyone and had a really fun day. As soon as I got home that afternoon though, we had to take his Auntie & Uncle to the airport.
I had a follow-up appointment with my Doctor, after school, where I was able to thank her for the website she'd given me. It was very reassuring and linked to so many other resources. I told her how we had found other Blogs about families in similar situations or families with children that have Achondroplasia. I was excited about this because it really helped knowing that we're not alone in this and that other families have gone though or are going through this. We listened to the baby's heartbeat and it was 147bpm:) I LOVE hearing that sound. We were anticipating the results from the amnio the following week but she told me that if she heard anything sooner than I did, she's call me ASAP to let me know so that we didn't have to wait.
After I left, I began my phone calls. First, to Jason to let him know how things went, then to my sister to make sure everything was okay and that they were getting packed & ready to go, and then to my best friend - our weekly phone chat. During that call, I received a call from an unknown number (which I usually don't answer) and answered it.
It was the specialist and the first thing she asked me was "Are you driving?" I told her yes, but I would pull over so we could talk. She said she'd call me back from her cell phone so that we could talk when I got home. ( I already knew that this wasn't going to be good news because I've always gotten calls from nurses or staff members with other test results and what doctor gives a patient their cell phone number unless it important?) As we hung up, I pulled over into a parking lot and my phone rang again... the Specialist tried to insist that I wait until I got home, but I told her I wanted to know now. She told me that the amniocentesis found that our baby had Thanatophoric Dysplasia and that she's so sorry. She told me that I have an appointment scheduled for that Thursday with a genetic counselor and the other specialist. I thanked her for the information and she asked me "Are you okay to drive? I'm worried about you." I lied and said I was fine. I hung up the phone and lost it as I knew what this meant... this was one of the horrible diagnoses that we had read about while researching Achondroplasia - this meant that her chest was too small for her lungs and that she would not survive after birth. I sat crying & puking in that parking lot for I don't know how long until I realized that I had to get my brother & sister to the airport and I wasn't even half way home yet! I continued to cry during my drive and again don't remember getting there, but I tried to make myself look acceptable as I walked in the door to my baby Bryce calling my name & giving me a big hug! As they finished getting ready, my sister kept asking me how my appointment was - "It was good," I told her. (Not a lie - my appointment was fine, it was the phone call afterwards.) I didn't want to spill the beans to her first, I wanted Jason to know first. She eventually called me out and knew that something was wrong. I lost it and told her everything starting back to the first ultrasound. She was crying too and hugging me. We regained our composure and made it to the airport where we said our good-byes. Jason & I had been talking and texting as we were supposed to meet for dinner, but I just told him to meet me at home as I needed to talk to him. He wanted me to tell him then, but I couldn't do to him what I just went through as he was still driving home.
When he walked in the door he gave me a hug & kiss and I dropped the bomb, "It's not good. The specialist called me and she has Thanatophoric Dysplasia and she's going to die." He was in disbelief. He asked if she said anything else and if they were sure? For the rest of that night we cried every time we looked at each other as we researched "TD" and decided that we had to officially name the baby. We finally decided on "Leah!" A name that has meaning to us from when we were deciding on names from our 1st pregnancy (before we knew we were having a boy). This made us smile and she started kicking - harder than she had ever kicked yet! (I think she likes it and was telling us that everything was going to be okay.)
Throughout that week, we both told our bosses and some close friends who knew we were pregnant and they were all were super supportive.
After that phone call it became increasingly difficult to respond to people who asked the sex of the baby and responded with "You must be so excited to have one of each!" I am not excited that my baby is going to die soon after her birth. I can manage to just smile and then walk away before the conversation goes any further. I know no one knows what is going on yet and therefore I can't be upset. We are very excited to be pregnant and very excited to be having a girl. We are very happy that our family is healthy and that Leah is okay as long as she's in my belly. We are excited to be able to get to know our little girl for the rest of this pregnancy and to be able to celebrate her.
No comments:
Post a Comment