Eleven, Part Deux

Darling A. Peevie,

So where was I? Oh, yeah: Standing next to your hospital bed, crying.

At 2 a.m. we sat down in a conference room with the chief of pediatric cardiology at Lutheran General Hospital, Dr. Ira DuBrow. We got a short but thorough course on complex cyanotic congenital heart defects (CHDs). I can't even remember your initial diagnosis--it's changed a half dozen times since then as the specialists got more information--but the first issue was a coarctation, or narrowing, of your aorta. It would need surgical repair as soon as you were stable.

I had tons of questions for Dr. DuBrow. I wanted to know why a level II ultrasound at 20+ weeks wouldn't have picked up on these issues. They only check for four heart chambers, he told us. They wouldn't have seen A. Peevie's issues unless they were trained and instructed to look for them.

And of course I needed to understand why this had happened to you. Was it something that I had done while pregnant? Was there an unknown genetic cause? Nope and nope. Turns out most of the time doctors don't know why embryonic hearts develop structural defects--even though heart defects are the most common birth defect, affecting nearly ten percent of all newborns.

Your severe congestive heart failure triggered a systemic shut-down affecting most of your other major organs. You were in such bad shape, Dr. DuBrow told us much later, that they did not think they could save your life. The beeps and alarms kept the intensive care team busy while you struggled to stay alive, and Daddy and I watched helplessly.

I told God in no uncertain terms that I was very angry at him for allowing this to happen to you, and that I could not lose another child. Caitlin was very much on our minds as we held your tiny fingers and watched your fluctuating oxygen saturation rate on the monitor.

We called both sets of grandparents the next day. "We" meaning "me." Daddy's emotions choked his words in his throat, and he could not speak. Grandmom and Grandpop M. cried and got on their knees to pray for you. Grandmom and Granddad B. drove all the way to Chicago from Florida to stand with us in your hospital room.

Finally, after four days, they stabilized you enough for the first surgery to repair the coarctation of the aorta. As they wheeled you out of the room and down the hall, surrounded by a dozen doctors and nurses, the four of us cried and held each other.

We met with the pediatric cardiology team, including the surgeon, to find out exactly what they'd be doing, and why. From that point forward, every time you faced another surgery or a new procedure, I asked three questions: What was the worst possible outcome? What was the best possible outcome? What was the expected outcome?

In an earlier report, Dr. DuBrow had written, "Because of the complexity of the abnormalities, the prognosis is guarded; however, I have reason to be cautiously optimistic that the baby can be brought through with reasonably good result."

Now, eleven years, three heart surgeries and dozens of procedures later, I watch you run, play, draw, read, imagine, climb, ride and generally experience a happy, healthy childhood--and I am grateful beyond words that you have been brought through with way better than reasonably good results.

Happy birthday, A. Peevie. I love you with a passion unfettered by reason.

Mom