It was going to be a routine (routine? really?) consult with Dr. Weinhouse today. A quick visit to confirm what thought we already knew: that she was growing, the diuretics were working and we were staying the course.

Forget that we had sneaking suspicions that her breathing was faster and more labored. Jocelyn and I were both realizing it – even feeling her chest almost imperceptibly heave just a little more as we held her. We talked about it the night before, not quite knowing what to do with it; and not even really accepting the reality of it in our minds quite yet.

Well, there was good news and scary news again today. And to be honest, it was scary for just a minute, then it morphed into acceptance of the inconvenience. The good news was that Julia had gained five ounces in a week and was now a full pound over her birth weight! We knew that it was so important for her to be growing well that we prayed on this last night – specifically for five pounds, nine ounces. It wasn’t a huge surprise, since she had been feeding so well, but it was a cool confirmation nonetheless.

But Dr. Weinhouse looked at Julia’s chest rising and falling with his experienced, penetrating gaze. “The breathing is the window to the heart’s left ventricle,” he said, “and God is telling us that we need to help her a little more.”

It was true. The little crease that her chest would make as she breathed was folding a little deeper. Even I could see it. And her breath rate was double what was normal. Our little girl’s heart was running a marathon even as she laid on the examination table.

Dr. Weinhouse had been preparing us for this moment. Julia would need a new drug to help her along. Digoxin – also known as digitalis – is a powerful tool in helping the heart contract more efficiently and relieve the symptoms of congestive heart failure. But it takes careful monitoring as the drug is introduced.

Within seconds, our plans and calendars for the day were wiped away and Julia was going to right from Dr. Weinhouse’s office to the Pediatric Intensive Care Unit (PICU) – only steps away from the NICU ward where Julia started her life. That kind of a change in the day is a little rattling for a parent – especially when we have to admit our fear that Julia wasn’t magically getting better, and that medical science continued to nail the diagnosis and course of treatment.

There was a little water in our eyes as we pondered the thought of having to go back to the fifth floor of the Royal Oak Beaumont’s South Tower (the home of Pediatrics), but I gotta say that Dr. Weinhouse’s encouraging tone was like Prozac for our frayed nerves. “The one thing you need to remember,” he said with restrained passion, “is that God LOVES Julia!” Funny how the best pediatric docs realize that they deal with three patients in any case: the child and two parents. By the way, he reminded me that it was my turn to pray as we finished our consult, and I did gratefully.

So now we are sitting comfortably in a private room in the PICU after a long day of intake, preparation, blood pokes and a frustrating feeding or two. We are thankful for a VERY attentive staff, and love they way they fawn over how cute Julia is!

On a side note, we’ve been dealing with increased mucous (common in kids with Down Syndrome) in Julia’s throat that has caused gagging and distress as she feeds. That’s not been fun at all. I’m glad to say that we are finishing the night with a robust and uneventful feed; and I’m realizing that we’ll need to remember how thankful we are right this moment in the months that will follow.

Sooner or later, (“God willing…” as Dr. Weinhouse often says) once the repairs to Julia’s heart are remediated, her feeding will become routine. If you are praying type of person, I humbly ask for two things tonight: that the medicine will do its work and make Julia more comfortable, and that I never forget to be thankful for a robust and uneventful feed.