A Mothers Worst Nightmare-Diagnosis Day

First off before I dive into this post, I wanted to let everyone know why I am going to post this. For some time now, I have felt led to write about my experiences with Isabella. Like I said before, I have always wanted to write. I have written several short stories, poems and children's books. I am going to try to do this in several short stories. It is not something I will do everyday, but be prepared to see them on here once in a while. I really want to write this story about Isabella not only for me, but I think it may be something that may touch the lives of other moms. Everyone who reads Bella's blog knows about my faith in God and knows how I see Bella as a miracle. I think that should be shared. My mom has said from day one, let Isabella's story be told in God's Glory. So....ENJOY

From the first moment I saw Isabella I thought she was perfect. She looked like a little porcelain doll. She had sweet, delicate features and not to mention she was only 5#3oz and 17 inches long. It was love at first sight.
Soon after birth, her pediatrician examined her. He heard a murmur. So, being the good doctor that he is, he did a chest x-ray to see if Isabella had all four chambers of her heart. Once hypoplastic left heart was ruled out, our minds were at ease. He said he would follow up with an echo the next week. I was not worried.
The next week, my mom and I took Isabella in for an echo. I was still not worried. As the tech moved the wand around my infant daughters chest, she did not have any looks of concern or confusion about what she saw, at first. She then politely turned to me and said, "I have to go get someone else to help me with this. I can't get a good shot of her aorta."
So the tech left the room and then came back with another tech. She quickly told the other tech, "Mom's an RN." (I think she told her this so she wouldn't say anything that may indicate a problem.)
The other tech turned at looked at me almost sympathetic like. I was still clueless at this point. Then she asked, "Does she ever turn blue when she cries?"
Deeply offended, I replied "No." I thought what are they suggesting, my baby has a heart problem.
As we left the hospital, I still had a peace about it. I knew God would protect Bella, and besides I couldn't even let myself imagine that my child would have a heart defect. So for the next few days, we just stayed home and enjoyed our new baby. To me, she did not appear to be sick, she was perfect. To others, they were seeing the signs. My mom and my sister immediately noticed her weak cry and her difficulty in feeding. I however, made excuses that she was just small and all she needed was time to grow.
I remained completely optimistic up until it was time to leave for the Dr. to find out the echo results. Matt was working, so I encouraged my mom to go with me, you know, just in case it was bad news.
As soon as I saw the Dr.'s face, I knew it was bad news, I just had no idea how bad it was going to get. It is funny because I think God had a way of easing Matt and I into the worst to come. The Dr. told me the echo had been read by a cardiologist at Children's Mercy in Kansas City. He said the pictures are not too clear because the equipment at our hospital is not made for infants. He did however see a congenital heart defect. The heart defect he thought he saw was, aortic stenosis.
Before I could even stop to think, the tears were flowing. I remember just sitting there rocking Isabella and feeling like I could not hold her tight enough. I felt as if no matter how close I kept her to my chest, I could not protect her. It was devastating news to say the least. I felt so helpless and out of control. At this point, my biggest fears were that she would be unable to play sports and that she might have to go into the cath lab to have her aorta dilated, or that she may have to be on medications. Like I said before, at this point, God was just easing the blow that was about to come.
We were scheduled to go to Joplin that Friday for a follow-up echo. The cardiologist from Children's Mercy was going to be there. As they did the echo in Joplin, I remained hopeful. I had researched aortic stenosis over the last few days and my mind was more at ease with that diagnosis.
Sometimes I wish I could go back and freeze time between the time they did the echo and the time the Dr. came in and delivered the news. Because once he delivered the news, my life changed completely. In fact I think a piece of me died right there that day in the Joplin Cardiology Clinic.
I remember the Dr. grabbing a plastic heart model and sitting in front of us. "I think she has a congenital heart defect known as Truncus Arteriosus." He was fiddling with the heart and talking, but all I saw were his lips moving. I caught bits and pieces such as "open heart surgery" "possible chromosome defect" "will need multiple surgeries"
My heart dropped. I pulled Isabella in close to my chest and began to rock her, chanting in my mind, Not my baby, not my baby, not my baby, please God not my baby. The tears were flowing but I held my composure until the Dr. left the room. I don't remember Matt taking Isabella from my arms, but I was soon up on my feet pacing. I had to get out of there. The walls were closing in and I felt like I was falling through the floor. I was utterly and absolutely inconsolable. All I could see, was my baby girl on the operating room table with her chest open. I know that sounds harsh but that is all I could see. I watched an open heart in nursing school and at that moment, I wished with all I had that one, I had never seen open heart surgery and two, that I was not a nurse who had the knowledge to know just how bad this was.
The Dr. scheduled us to go to Kansas City on Monday for another Echo and for a cardiac cath. (now the possibility of a cardiac cath seemed insignificant to what we were about to face.) Matt and I left the office in a daze. We were both in complete shock. About a mile up the road, we stopped to call my parents and let them know. I remember telling my dad and wishing that he could just jump through the phone and fix it. I just wanted someone to make it all better. He kept saying "it will be okay Meg, we will get through this."
I just kept thinking, it is not okay. I was in physical pain by this point. I was literally doubled over because my chest was so tight and every inch of my body ached. I was devastated. I thought I would never get past that moment.

Reflection:
I look back on that dark day and remember feeling so helpless. I am thankful that God lead us down the path the way he did. During that first year there were several times I thought, "this is the worst day so far". We had several "worst days" and each time I didn't know if I would survive. I remember thinking that I would never survive that day she was diagnosed. Over the last year I have "survived" only because I let God carry me for most it. That is why I like the 23rd Psalms. God is the driver in life, and even though some of the places we go are very scary and hard, he will guide us through.
"Yes, even if I walk through the valley of the shadow of death, I will not be afraid of anything because You are with me. You have a walking stick with which to guide and one with which to help. These comfort me." Psalm 23:4