Aortic Coarctation: History, Part 2

There were many things that were said by professionals before Rayne was diagnosed. I wish they had watched their tongues. I, specifically, was told that I was not feeding my daughter enough and that her pediatrician believed that was the only problem. When we brought her to the emergency room for her "acute life-threatening event (ALTE)," they brought in a social worker to talk to us because of my postpartum depression. Her pediatrician told us that that wasn't the half of it, they had actually called him and suggested calling Child Protective Services (CPS) on us. He, thankfully, told them he didn't think it was necessary. They sent us home on more reflux medications and Reglan, of all things.

Let me tell you about the two times my daughter died in front of us. The first occurred on the Fourth of July, 2009. Rayne was six months old and bouncing happily in her bouncy chair. We had a moments rest as she watched us crack into the lobsters that were ridiculously cheap at the time. We soaked them in butter and were happy to be spending the evening as a family. Lexi talked about how the lobsters were "cute" and wouldn't touch them. She had watched them go from living to dead and hadn't appeared bothered by it, only curious.

In an instant, I saw Carter standing in front of Rayne. "What is he doing?" I asked Ed as I repositioned to see her face. "Quick, Ed! He just shoved a spoon down her throat. Carter, STOP!" Ed sprung to his feet and swooped Rayne into the air. As he held her facing away from him, he attempted to put a pacifier in her mouth to calm her down. I could see her holding her breath for a large scream that would never come. Her eyes rolled back into her head and I screamed at Ed to drop the pacifier and give her to me. He obliged.

I remember panicking slightly. Quickly, in my mind I went over CPR with an infant. I dropped to the ground with my tiny, 10 pound baby and laid her on the cold, unfinished kitchen floor. I barked out at Ed to call 9-1-1. I tilted her head back. At that point, what little color she had came flooding back into her face and she began to whimper. I never had to breathe for her and I cradled her as she cried. I waited patiently on my porch, tears welling in my eyes, for the paramedics to arrive. I didn't want them to come into the house, to scare the other children. What happened after they arrived was uneventful.

The second ALTE occurred when Rayne was a little more than 8 months. She slept with us at night because I needed her close. I nursed her quietly in the night and often she would wake screaming. Clearly nothing consoled her, but we had no idea that her heart was so large and inefficient. This night she woke up and I knew something was wrong. I rolled up onto my side and hovered inches above her, watching her every movement as they ceased. Her color paled and her breathing slowed. I can't be sure if it stopped, for seconds maybe. I quickly lifted her into my arms and swung my feet off the edge of the bed. She took a breath, stiffened again, and paled. I stood up and flipped her onto her other side in my arm. No, don't do this to me. I can't handle this. You have to stay with me. I woke Ed up with my cries and yelled for him to once again call 9-1-1. I raced down the stairs with her in my arms and paced the hallway, prepared to do only what I knew how, to start CPR and wait for the paramedics to come and pry me away, but her breath held. Twice more she stiffened and paled and then that was it. She panted lightly in my arms, too exhausted to cry and I held her tightly, as patiently as I could muster as the minutes seemed like hours. When the paramedics arrived, she was fine. We were able to buckle her in her carseat and I opted to bring her to the emergency room myself. That was the horrific visit we had before finally being treated by the Barbara Bush Children's Hospital.

Aortic Coarctation: History, Part 1

Please don't scream, Mommy. My heart hurts and I know I can't tell you, but when you scream it hurts even more. Mommy, Mommy, where are you going? I need you so much now, but you scream and you call Daddy, but I need you now Mommy. Hear my plea; make me better. Mommy, don't go to work; I need you more than anyone or anything else in this world. Only you can hear my pleas.

For 9 long months, my daughter cried out to me. If she could have spoken, she would have told me what ailed her so. As it was, I went in for visit after visit only to be turned away and given an array of reflux medications. Zantac to start, before even her one month birthday, followed by hundreds of insurance-reimbursed dollars spent on Prevacid solutabs that never worked. Hours and hours I spent reading about acid reflux, visiting the forums, searching for answers for my littlest one that the doctors were not providing for even though it was within their reach all along.

I can describe to you the inner turmoil I felt knowing that my daughter was sick and I could not be home for her. I can describe the endless insomniac nights and the bitter arguments with my husband as a result. I can describe to you the multiple medications that evolved over my head dealing with my postpartum depression. Only now, I can describe it with reason because then there was no reason. I had a child who would not grow like normal children, I though she was high-needs, and the doctors thought that perhaps it was a silent reflux. Give mother the medications, send her home, little Scarlett, my "Rayne", will outgrow this, we're sure. Don't all fussy babies get better after a few months?

But she didn't outgrow it; in fact, she didn't grow, which in the end was the last straw. Failure to thrive, failure to thrive is what got us admitted to the Barbara Bush Children's Hospital when my baby was two days shy of nine months. That, and the fact that I had quit my full-time, benefit-providing, high-paying job just one week prior. I knew I could not go on at work with my baby's ailments at the fore of my mind. I knew that something needed to be done. Ultimately, I demanded a referral to a gastroenterologist and it was that demand that got us the attention she deserved.

October 7, 2009: We were admitted at the Barbara Bush Children's Hospital in Portland, ME.