Friday, March 14, 2014

Lost Post

I had an ultrasound a week ago, and for the 2nd time the girls didn't cooperate for us so that we could get good images of their hearts. My doctor came in and looked and said she wanted me to have an echocardiogram. She patted my leg and I didn't see the same look of confidence I usually get from her. I gave her an opportunity to put me at ease - "But we're not really concerned, right? We just need better pictures." She said we need to have me come back in. I left the office afraid.  I did not have a good feeling at all.

The echocardiogram was Wednesday morning. More than two hours of watching the girls move - both transverse, then one breech and one head down, and then both transverse again. It was amazing to see our strong girls move. "Can you feel all that?!" I could feel every single movement - in my belly all the way back to my spine. At the end of it all, the cardiologist smiled and said she saw no problems. Molly and Charlotte's hearts looked great. We had two healthy, wild babies.

Daniel and I left the office in great spirits. My stress melted away. We ate lunch and talked about improvements we'll be making to the house before they arrive - we walked around the baby boutique. Daniel went to work and I went home to rest (after I posted the great news to Facebook and bought myself a celebratory treat).

At 4 o'clock on Wednesday the cardiologist called me and left a message. She needed me to call her back. I called her - "Are you home?" Yes. "Is anyone with you?" No. "OK. Well, I need you to come back and see me in 3-4 weeks for another scan." OK. "Baby B has a structural heart defect."

Honestly, I can't tell you exactly what else was said. She said it was fixable. I asked if she could just tell me what the problem was. She said she would rather do it face to face. I cried. I couldn't breathe. She said she wanted to see me and Daniel on Friday. I asked if she could just tell me now. It's better if we do it in person. Can't we do it Thursday? We have an OB appointment THURSDAY. She had clinic Thursday, but she would fill my doctor in and we'd get some info on Thursday.

I called Daniel at work. I told him. I needed him to come home. I needed him to not work Thursday. I didn't want to be left alone. My mind went all over the place. Charlotte was not healthy. Nothing was the same anymore. I deleted my Facebook post about our healthy girls, because it wasn't true and I couldn't see the sweet congrats anymore.

I barely slept Wednesday night and Thursday morning felt like it should be Friday. I felt like I'd aged at least 3 years over night. I cancelled my nutrition appointment because I could not bear to sit and tell some stranger what I'd eaten in the last 2 weeks and have her stare at me and judge me. We went in for the OB appointment with the Physicians Assistant. She could see we were both stressed. Daniel did all the talking because I'm having trouble with words. He told Aimee about our phone call, she looked at my file and explained everything. The problem was with Charlotte's greater arteries coming into and leaving the heart.  They were transposed or switched, and it would require a surgery to fix it.  It was serious, but candy coated somehow. This was a big deal. Charlotte would need surgery within a few days of being born. We'd be OK. We'd all look back at this someday, and it would be a distant memory.

Daniel and I went and processed. We ate lunch. We held hands and I tried not to cry and we even laughed about other things. We looked at art at Z Gallerie. We went and bought the girls their cribs and then we went home to hug Zoe and Finn. We took the kids, my parents and Daniel's mom out to dinner. Everything was kind of normal, but not.

This morning was our appointment with the cardiologist. She told us how upset she and our doctor were. I cried. Of all the structural heart defects, if you have to have one - this is the one to have. That is both comforting and not. Charlotte has Simple Double Transposition of the Greater Arteries (D-TGA) meaning the greater arteries are switched. This happens in less than 1% of all babies. Less than one percent. Ridiculous. Charlotte will go straight to NICU after birth. They will put her on meds and stabilize her and she will need open heart surgery in her first week of life... and then she will have recovery time in NICU. She will need to have a cardiologist all her life. While Daniel and I have no heart defects, her children are more likely to have heart defects. So far, it doesn't look like Molly has the same problem, but we can't be 100% sure.

We are in one of the best places in the world to deal with this. People come from all over the world to have the doctors at Texas Children's fix them. Our doctors and staff genuinely care about us and our girls and they will take the very best care of all of us. If this had to happen, we're glad we're in Houston. We're glad that we were already getting extra attention because we have identical twins. We're glad they found the problem now so they will have a cardio team ready to handle whatever they need to the moment Charlotte is born.

All that said, we are - in a fog. This is the hardest thing we've ever dealt with. I can barely talk about this with anyone but Daniel and the kids. I can't say that Charlotte is sick out loud because it hurts. Daniel is of course having a hard time too, and I know he's worried about how I am... but with him I will be ok. He's the strongest, best partner I could possibly have and we will get through this and the girls will be healthy and strong. Our family can do this.

But I really, really don't want us to and I really wish someone would call me and tell me they made a big mistake. But that's not going to happen. This is our new reality, and I hate it, and I'm sad, and I'm not myself. And I thought I should let you know.

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