Tuesday, February 4, 2014

Lead Me Home

The days leading up to today were hopeful, prayerful, and disquieting. After we received the news two weeks ago, each passing day had been getting better than the next. In those two weeks, Ray and I felt moved to name the baby. We discussed a few names, and decided to name him Micah. It's a beautiful name and I feel very protective of it. I don't want just anyone to know the name but I want everyone to know he is our child.

This past Monday, Ray received a call from the genetic specialist. She explained that the results from the cell free fetal (CFF) test came back with with indicators for DiGeorge syndrome. Thankfully it was Ray who spoke with her. She wanted to talk to me too but I couldn't even bring myself to call her back to hear the details firsthand. I sat in my office and cried for the rest of the afternoon. It seemed like an emotional set back but I took one look at Dylan when I got home from work and remembered how much my life changed when he entered the world. There were so many uncertainties being a first time mom. When Micah enters the world, our lives will change again. I want to be the best mother I can be. His heart defect and his potential chromosomal abnormality are not about me - they're about him.

But strangely, today wasn't as scary as I thought it was going to be. We met with the cardiologist, the genetic specialist, and the perinatologist. I remained composed without even trying. I asked all the right questions. I think I was just happy that there wasn't any new news. I think God gave me the strength to face today.

The cardiologist still maintains that Micah has TOF with PA, VSD, and MAPCAs. He did however, mention that Micah's heart rate and "squeeze" were within normal range. The genetic specialist told us that they ruled out certain symptoms. For example, it's unlikely he has central nervous system damage based on the imaging of his spinal cord and brain. Cleft lip wasn't seen on the imaging device. He doesn't appear to have any skeletal abnormalities. We won't know anything more about his parathyroid, thymus, or whether or not he has an "intellectual disability" until after he is born. Finally, the perinatologist put us in contact with the nurse coordinator for Inova. The coordinator will take us on a tour of the NICU, set up a meeting with cardiac surgeons and put us in touch with other specialists once Micah is born. Now that I think about it, it seems like a lot to take in, but I feel really confident about the medical team that we're slowly acquiring.

Dylan on the other hand has been such a stress reliever. He's nearly 15 months old and is SO ADORABLE! He loves feeding Luna her food one piece at a time. This activity keeps him occupied for at least 20 minutes at a time. It even diverts him from his favorite dishwasher activities! Sometimes, he'll pick a piece of food out of Luna's bowl, contemplate putting it in his own mouth, and then runs over to Luna who gently nibbles it out of his hand.

He's also able to say the word "Joseph" which, coincidentally, is his middle name and his Granddaddy's name, haha. We think he learned how to say it at day care because Joseph is the name of one of his care takers. Whenever we say "Joseph" to Dylan, he gets this little smirk on his face and looks around for him.

He's also been having night terrors. He'll wake up in the middle of the night screaming inconsolably and everything we do seems to make it worse. The other night we turned the tv on trying to wake him up and he would NOT wake up for anything. He just continued to scream so we put him back in his crib and he started slamming his back/head into the crib rails. It was really kind of frightening! He eventually settled down and fell back to sleep. I researched it a bit and found night terrors to be somewhat normal. Next time it happens I'm going to try not to interfere and see what happens. Poor guy.

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