Sometimes in the midst of our ordinary, mundane lives, things happen that we have no control over. In fact, so many things happen that we have no control over.
I'd like to say that I'm used to this by now. Goodness knows I've been through my share of crazy. But it still shocks me when I get unexpected news.
On Wednesday, our routine ultrasound appointment gave us some not so good, unexpected news. They noticed some irregularities with our baby girl's heart and referred us to EVMS and a high risk OB. They noted potential heart defects and a slower heart rate than she'd previously had.
Luckily, our doctor knows one of the high risk docs at EVMS so he was able to call in a favor and we were able to get an appointment on Thursday morning. I was very thankful we didn't have to wait for a follow-up appointment because that is often worse than knowing.
I get to our appointment Thursday morning and was called back in right on time (I know, amazing, right?). I had two ultrasounds that morning, which lasted about an hour and a half, cumulatively. I'd never had any ultrasound that long.
The tech was amazing. She was very thorough and took her time, showing me our baby girl. She showed me her little arms and legs, her head, her torso, she even confirmed it was a girl. When she got to her heart, she fell silent. She spent a lot of time on her heart, with different views and listening to her heart beat. She changed the view a lot, but I could see that her heart was beating slower than it should. It just didn't look right, even to me.
And when she had me hold my breath, we were able to listen to her heart. It was definitely slower than it should have been. I kept looking away from the screen, hoping that if I wasn't looking, maybe things would be different.
After it was all said and done, the tech told me there were several issues going on and that she would be back with the doc. I waited in the room for maybe 20 minutes until they came back in.
The doc wasted no time getting right to the heart of the matter (no pun intended). I don't remember a whole lot of what he said, other than she has fluid in her abdomen and around her heart, which is indicative of poor circulation. And her heart beat was in the 40s/50s. He also told me we were weeks away from viability, so at this point, there was really nothing more they could do. He asked if I was ready to speak with a genetic counselor, to see if there was any testing they could do to see why this happened. I told him sure, but that we'd already had a ton of testing done.
So he walked me down the hall to Susan's office, the genetic counselor. She asked me a ton of questions about my history, and I told her the same thing. That we'd previously worked with a reproductive specialist at EVMS, who had done a ton of testing. Sure enough, she looked it up and was in awe at how much had been done. She couldn't even think of any new tests that could be done. So yeah, we had a lot of testing done.
She then told me the technical terms for what was wrong with the baby...and I asked her to write it down, because I knew I wouldn't remember it. So the technical terms are heterotaxy, non-compaction of her heart muscle, A/V canal issues, pericardial effusion, and complete heart block.
In laymen's terms, heterotaxy means her heart and her organs are on the opposite side of where they should be. Not a huge thing in the grand scheme of things, but it complicates matters. Non-compaction of her heart muscle means her heart isn't beating the way it should. This means it's not pumping blood and oxygen through her body, which is causing pericardial effusion. This is the fluid accumulating in her body. Complete heart block means the electrical stimulation isn't working in her heart. So the atria pumps, but the ventricular doesn't respond the way it should. It causes the slower heart beat, and of course, the lack of circulation through her body. And the A/V canal issues...well, the simple way to explain this is that it's a complex heart problem that involves several abnormalities of structures inside the heart, including improperly formed valves. Her poor little heart isn't fully formed nor is it is fully functioning.
They ultimately gave me two choices...schedule a D&C now or wait and let it play out naturally. Let her continue with whatever is going to happen. This means, if she were to die in utero and I was at or beyond the 17/18 week mark, they would have to induce labor and I would give birth to our sweet girl. I couldn't make that decision without my husband or without more research and thought and prayer. So I left that appointment heart broken and numb, knowing I had to tell Nick all of this information and hoping I got it all right.
I called again on Friday after I'd had a chance to think about things and to ask Susan if they were sure there was nothing they could do. According to her, because of the heart muscle not compacting appropriately, there is no fix. She's basically in heart failure in my belly.
So I've spent the weekend researching and trying to determine if there is a fix. I'm certainly not a doctor so I don't know any better, but I don't even know where to start. Do we get a second opinion? Do we travel to some far off place hoping for different results?
I'm not sure what the answer is, but I have been praying. Fervently praying. For a miracle. For her heart muscle to start working and beating the way it should. For healing. I know there's not much in my control right now, so I put it all in God's hands. Only He has the power right now to heal our baby girl. And I believe in miracles.
So if you believe, if you pray, please pray for our baby girl. Pray for a miracle. Pray for healing. Pray for strength. Our next appointment is Thursday morning. We'll see what's happening with her. And hope there are changes for the positive.
Thank you to everyone who has followed our journey. Who has prayed for us. Who has sent me kind messages and love and prayers. I read every single one, and they're very much appreciated and loved.
I love y'all. And I hope you have a wonderful week.
With love and wellness,