Trying to Figure it All Out

Tuesday morning, I woke up and got ready for work with everything weighting on my mind. I had told Adam that we could read that little brown booklet together later. But he was at work, and I was hungry for information that would let me have the same hope my mom had. So I opened the little brown book and started to read. I paged through to try to find the heart defect that mom told me about. It was the last one described. The last line said, "Unfortunately, even with surgery, the long-term outlook is usually poor for babies with this condition, unless a heart transplant can be performed." At which, I broke out into tears that I couldn't control. What I just read had told me that my baby was going to die, unless someone else's baby did so that mine could have a heart transplant.

I paced, I cried, I waited at the window to see Adam's car pulling up, but it never did. 6:45am passed, and I didn't leave for work, 7am passed and I didn't leave. Finally at 7:15am, I gathered up enough will power to get myself into my car and leave for work, without seeing Adam. I somehow managed to make my way through 1st hour, and mass. During 2nd hour, I told Heidi and started to cry, but pulled myself together again and made it through the rest of the day.

During 7th hour, my prep, I got a phone call from my midwife, Carrie. She told me that we were in her thoughts & prayers, but that she was transferring my care to MN Perinatal. She said that her last two pregnancies were high-risk, and that's where her care was transferred. She recommended Dr. Burris, after I told her about scary doctor. I would now be delivering at United, so that baby could be brought right over to Children's to be taken care of.

On Wednesday, during our 1:00 dismissal at school, I sat in my classroom and researched HLHS. I think the best site I came across was from a hospital in Philadelphia called Chop. It had a few videos that explained really well what HSHS was, how the surgery works, and, my favorite, life with HLHS. The last video showed several kids who are living with HLHS, and are doing quite well. I started to tear up a little when one of the doctors said that he had even gotten an invite from one of his patients to his wedding! This gave me the hope I was looking for!

I also found information about this 3-stage surgery. I found survival rates, depending on the hospital and the doctor were anywhere from 75% to 90%. I started to cling to those numbers, as they look much better than what scary doctor and the stupid little brown booklet told me.

On Friday, I got a call back from the genetic counselor, Joan, letting me know that the quad screen results came back and that everything looked good. The risk of the baby having Downs Syndrome was 1 in 3700, Trisomy 18 was 1 in 5000, and spinabifida was 1 in 4400.

Now we are just waiting to meet with the cardiologist at the ultrasound on December 22nd!

The "Other Part" of the First Ultrasound

The other part of the first ultrasound that I wasn't ready to blog about right away was when "scary doctor" (as mom and I refer to her as) came in...

Once the ultrasound tech (Krista) took a bunch of pictures of baby, she said she just needs to get a picture of the four chambers of baby's heart for the doctor. So I watched the monitor with different blobs moving across it (sometimes being able to recognize parts of the heart). But the u/s tech didn't really say much other than trying to get "peanut," as she called baby, to turn.

Once she was done, and gave us a bunch of pictures of baby, she said, "The doctor will be in, in a minute to talk to you." Not having ever been pregnant before, I didn't really think anything of it, and just figured that's how these appointments go.

I got my jacket on, and sat back down to wait. We didn't wait very long for the doctor to come in.

Once she (Dr. Danilenko) was there, I really don't remember a whole lot of what she said. But what I do remember is that she said she was very concerned about our baby's heart. It only had two chambers and she wanted to rescan to make sure they were reading it correctly. Then she went on to tell us about all these other tests I would have to have (most of which I really didn't hear). I remember she said I needed to have a Level II Ultrasound with a cardiologist there to look at the heart, and that they wanted to echo my heart, because they are concerned about my heart murmur (which I've had since birth). She also wanted to do an amniocentesis right then & there, along with a quad screen. She never actually told us any name for this two-chamber syndrome, but she did tell us in such a matter-of-fact tone, that it has a high mortality rate. Which of course, is when my heart just about stopped beating itself.

I laid back down on the bed, and she did the ultrasound again. She still could only find two chambers on baby's heart. I agreed to do the quad screen (blood draw), but I didn't want to do the amnio at that point (and I'm not sure if I'll want to do one later either).

Before we left, the genetic counselor came back in and gave me a little brown booklet with the title "Your Baby Has a Congenital Heart Defect" and gave us a little console.

After the appointment, I called Adam from the parking lot and briefly explained what scary doctor had told us. Then, mom took me out to eat at Panera, so I could re-collect myself as best I could, and then I went back to school (though my day was already over). Adam told me he would meet me at school (he had to be there for set-building & he really wanted to see the pictures).

When I got back to school, Diane asked me if I was okay (apparently I hadn't hidden my tears from the car well enough). I told her yes, and showed her and Barb the ultrasound pictures. I found Jennifer, our principal, and told her what happened, so that they would be aware that I may be needing time off for more appointments. Then I went up to my room and did what I could to try to keep my mind off it.

Adam showed up, and we held each other for a few moments. I showed him the pictures of our baby and pointed out the 5 little fingers and the little foot we saw. He didn't want to worry about the rest until we had then next ultrasound. We talked a little about it, but I don't think he wanted to think or talk about it at that point.

He had to stick around for the set build, but I left, and stopped by mom's on the way home, as she told me she had something for me. I stopped by and after the appointment she had gone shopping and Vickie's was giving away little dogs with each purchase. The dog they had given her said "HOPE" in big white letters. She gave it to me and said she wasn't worried anymore.

She also showed me some research she had done on the internet, but I didn't really hear a lot of it. I remember she said that she found that it was called Hypoplastic Left Heart Syndrome (or HLHS). She told me there were surgery options or a transplant was an option.

This is all I really remember about that day... other than Adam holding me all night long as I tried not to cry myself to sleep.