My doctors are “stumped.” Apparently, I am an anomaly, an outlier–unprecedented. In a way, I am a fascination but I am also instigating much concern. When an entire team of pediatric specialists, ranging from cardiologists to pulmonologists don’t know how to “treat” me, it can be a bit discouraging.

Friday, March 17th was every bit distressing. I was in pain. A lot of it. My pain effected everything…causing a ripple of acute discomfort throughout my tiny frame but also causing great emotional agony for my family. Mama for sure. Before Mama ever signs off on any treatment for me, she always asks, “Is she going to feel any pain?” She was with me for several hours until my pain was managed sufficiently. She phoned Grandma. Two words should never be said together to any grandma : baby and pain. But these two words did initiate a special family prayer and fast day for me; a blessing from the local Houston LDS Bishop and a better pain management plan from my doctors and nurses.

The good news: I am no longer in severe pain. The bad news: my doctors are really at a loss at this point about my treatment “plan.” So, I am pretty much sedated until they come up with a new one–a “plan” I mean. In the meantime, please keep praying for Me and Mama and Daddy (He now lives with us in Houston, too.)

Major areas of concern: fluid on my lungs, Patent ductus arteriosus, or PDA, my oxygen levels, my hypertension and oh, the newest concern–the insertion of a feeding tube punctured a membrane near my heart and lungs. Are you kidding me? Besides the pain meds, diuretics and pedi-steroids, there are now three types of oxygen apparatus connected to me because apparently, humans have two types of blood pressure–pulmonary hypertension type and the regular type. I have under went two blood transfusions….need I continue?

And yet, even with my body saturated with “remedies,” my Heart is full of Love. I feel it. I am surrounded by it. I know what Love is. Collectively, I am in the “hands” of the best medical teams in the world…collectively, they represent decades of study and practice…they are doing their utmost best, but mortal “best-ness” doesn’t compare with the power of God, His tender mercies and His Love for Me. He wants the very Best for Me.

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