
My own experiences are bringing me to people that have changed me life for good, people I would have not met otherwise. I have made some new friends who live just down the sidewalk from me. They have a brand new baby, just a month old. When he went in for his one week check-up, they learned he has a condition called Total Anomalous Pulmonary Venous Return (TAPVR). He was life-flighted from the doctors office to the Primary Children's Hospital (PCH) where they have one of the best cardiac heart teams in the country, if not the world. There, he had to have emergency open heart surgery (OHS) in order to live. Last night, they had to take their baby back to the hospital last night to admit him for an infection. During that time, I had the blessing of watching their eldest, barely two years old. I was in awe of the faith the parents of these baby boys carry. They have full trust in the doctors and in God that whatever is to come is supposed to be. Some may say they are naive. I say their faith is refreshing!
Late last night, after the parents came to pick up their eldest son, I sat down to research TAPVR. I found this website which is great at helping one learn about the various defects. During my research, I learned that there are 49 Congenital Heart Defects (CHD). FORTY-NINE!!! Do you know that 1 in 100 children are born with a CHD? My defect, ARVD, is classified under Electrophysiology Defects. Although I am no longer struggling with mine, I still read up on it, so I understand it better. This information may be critical in months and years to come.
It is not until now I have publicly shared some information. Until now, I was hoping there is nothing to tell. Yet, I feel compelled to share it, for there may be another mother who is enduring the same emotional turmoil that this mother's heart is feeling. There is a 50/50 chance my children will have my genetic condition. So far, my two eldest have not shown any signs. My third, however, is showing nearly every one. Curiosity strikes my spirit strongly as my husband and I prepare for our youngest son to see the cardiologist. On August 6th, we will take him to see a leading cardiologist at PCH. From there, it will be determined what tests are necessary, if any, to learn of the functions of his heart. As a mother and a CHD survivor, I know, I know there is something not quite right. I see it when he wakes up from a deep sleep and his heart is racing at more than 130 BPM. I see it when he walks down the hall, suddenly becoming super fatigued. I see it when we are out hiking together and I check his heart rate, where it has drastically dropped to the low 60's. Something is not quite right. I was hoping it was years before we would have to face this again, if ever. The time has come much sooner than I anticipated, especially only learning a year ago that one or more of my children may dace the same future as I. I just pray for strength on his behalf that whatever we are facing, he will survive.... that we will survive.
I know it is God's will in whatever is to come. He created B-Man's heart and mind. God knew what He was doing when He wired B-Man's brain in such a way that modern doctors would tell us he has autism. This same Creator also knew what He was doing when He put this exact heart in B-Man's body. It is a perfect heart- perfect for whatever lessons B needs to learn in this life and what God needs us to learn as well. God is perfect in His knowledge, even if we are not. Peace does not evade me, but instead permeates my soul. God is with us, walking this road- no matter where it leads.
My name is Jenny McKinney. I am a heart warrior, and possibly a heart mom. Instead of chocolate, I think I shall return to bed.
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