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.
So glad you received some positive news about Micah (love that name and love him already!) and then the doctors are ruling out some of the digeorge symptoms. Dylan sounds like he is doing a great job of being adorable and keeping your mind off things that we as mother's can't help but obsess about. Love that little guy
ReplyDeleteI want you to know my family and I will pray for you all. I was reading about how Dylan was having night terrors. My daughter, now 3 suffered from them for almosta year. They are very scary - more for mom and dad than them. I don't know if this will help, but our doctor gave us some great information! A night terror is when their little bodies get stuck between sleep stages. They actually have no idea what is going on and will never remember it. They will have their eyes open (almost a glassed over look), sweat, scream, & thrash around. Our doctor said to NOT try to wake her. To let her body figure it out. To simply be there, talk in a calm low voice, and make sure they don't hurt themselves. Like I said, it was harder for us, I often sat and cried with her. The episode would last anywhere from 5 - 30 minutes. She also told us we needed to find a trigger for them. We kept a close record of what she ate, did, nap schedule, etc.. I was so desperate to help her. We ended up seeing a pattern develop in her snacks and naps. The more red or blue dye she had, the less she seemed to nap and those are the days she had the night terrors. Meaning, the fruit snacks, that stuff. We knew if she had red or blue dye and did not have a nap that she would have a night terror. When we looked, it amazed us just how many foods have those!! We have switched her to lots of different organic snacks and put her on a strict nap schedule. I am happy to say she has not had one in a while. Hopefully this helps and you can find the trigger. Stay strong, sing to him, rub his head, back, arm while he has his terror. It will stop, he will move to the next sleep level.
ReplyDeletePlease be assured of my families prayers for you and sweet Micah. As the Mama of a special one, even though you feel overwhelmed with ALL the possibilities that may be for your son, know that God has a plan and not even you know what it is. I promise it will be bigger and better than anything you can possibly imagine. Just take it one day at a time, one appointment at a time and one crisis of faith at a time. Hope wins all. Never give up HOPE!! Blessings and Grace form our house to yours...Mary @ www.passionateperseverance.blogspot.com
ReplyDeleteOur Emily had night terrors. Scary. We tried playing beautiful classical music--I will forever love Pachebel's Cannon and Trois Gymnopedies for their calming effect, on me! I'm not sure anything helped our frightened child. I love you Laura-- for your courage, openness, and love. Count on my prayers for you, Ray, Dylan, and Micah.
ReplyDeleteLaura- I stumbled across your blog on a sleepless night. God has blessed you with a wonderful family! Your writing is reflective, insightful, and beautiful. Have you read the book "A Catholic Mother's Companion to Pregnancy" by Sarah A. Reinhard? It has weekly spiritual devotionals and it very moving. It makes you think of pregnancy in a new way. I will be praying for your family- for strength, courage, and perseverance on your journey. You are blessed to have a supportive family and have such strong faith to rely on. -Beth Ann
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