I lied...

So I know my latest posts have made our lives seem nothing but sunshine and roses. But that's not entirely true. Yes, I have been on cloud nine and so madly in love with my girls, but I'd be lying if I didn't tell you that I've had a lump in my throat and a pit in my stomach the past two weeks.

It all started when our pediatrician called. She informed me that both Ar.den and El.oise had an abnormal result on their newborn screen. I vaguely knew about the newborn screening...that they pricked babies' heels to check for things like cystic fibrosis and other genetic diseases. As I now have learned, the state of Illinois also tests for about 50 extremely rare genetic metabolic disorders. And my daughters tested positive for one of them. The screen came back positive for an "organic acid disorder." The pediatrician told me to make an appointment with a genetic metabolic specialist ASAP. I think a piece of me died inside that second.

I immediately started googling frantically and got more and more worked up. I started hyperventilating, sobbing, I thought I was going to puke. What I read online told me that organic acid disorders can cause developmental delays, muscle weakness, seizures, coma, and sometimes death. B put on a brave face and told me that we wouldn't assume anything until we'd met with the doctor and gotten some more answers. I couldn't emotionally or physically deal with this. My mind just shut down. I went into survival mode and just denied I'd even received the call.

The next day, going through the motions, I made the appointment with the specialist for later that week. The same day, a genetic counselor called me to discuss the screening results. As it turns out, the NICU had retested both girls and they'd tested positive both times for the same disorder. However, the counselor also reassured me that many children with this disorder have no symptoms and never have any side effects of the disorder. That reassurance fell on deaf ears and I continued to just deny, deny, deny.

When we went to the specialist, an army of a genetic counselor, dietitian, and physician marched into the room. I thought I was going to lose it again, but I stuck to my survival mode and took meticulous notes throughout the appointment. They drew blood and collected urine from both girls. The results of this test would confirm whether or not the girls have the disorder.

I got the call today. Both girls are completely, 100% healthy. The initial results were a false positive. They do not have an organic disorder. The weight of the world lifted from my shoulders. I could breathe again. Interestingly, since the screening results (fraternal twins both testing positive for something so rare) were so unusual, the genetic counselor suggested that it is possible that I have an organic acid disorder which resulted in the elevated levels in the girls screening. He said many people are completely asymptomatic and never know they have it (they only started screening for these disorders in 2002). He said I could get tested, which I am considering.

Of course if the girls did have the disorder, we would have done everything in our power to be their advocates and ensure the very best care for them. We would have been ok. But today was a very, very, very good day and I'm so thankful that this post has a happy ending.