If I Had a “Me” 9 Years Ago

April 13, 2014 we met our sweet baby. He was a force. Literally. Near 10 lbs. (she wears like a badge of honor) and about 10 days late, I tried to push Elliot into this world. I remember saying, meds worn off, “I CAN’T DO THIS.” My dad in the room, alongside my mom and my husband, laughed and said, “Of course you can.” And……..well, I did.

About 4 hours later, our baby forced to the NICU for respiratory distress, we sat on a bench on our way from being kicked out of the the mother-baby-unit, made only for “healthy” babies. My husband and I cried and cried. Like the earth we stood on had been pulled from under us.

I can’t do this. How do we do this?? But we did.

One month later, after surviving about 11 days in the NICU, our baby was diagnosed with an extremely rare disorder. A disorder that causes lung disease. The lung disease, we were told, could be minimized by a lifetime of daily breathing treatments. The weight of diagnosis was compounded with the sentence of a lifetime of managing the disease.

But we figured it out. We asked, we read, we you-tubed ALL that we needed to do to manage this disease. We made a system that worked for us and for Elliot. Funny enough, I now find myself in touch with parents of kids with the same diagnosis and life sentence of managing this disease, sharing any tips I have to make it manageable and effective. And then it occurred to me that I could share on here, in blog format, the things that have worked for US. I hope that it can be of use! Please always keep in mind that I am NOT a doctor nor am I an expert on PCD. I am not giving medical advice. I am simply a mother that could have used a “Me” 9 years ago to share with us all of the things that we know now. :)

MORE TO COME! NEXT UP….BREATHING TREATMENTS!