pediatrician update

So...we went to see Moriah's pediatrician today. She weighed in at 9-1/2 pounds; actually, not that much since her last weigh-in two weeks ago. The pediatrician confirmed that Moriah looks great (and she does...no blue skin or physical appearance of heart failure, though he was concerned about the symptoms I described to him). But when I called the cardiologist back to tell him her weight and the pedi's impressions he decided we should be seen soon anyway. I'm waiting now for his office to call me back (probably tomorrow morning) with Moriah's new appointment time for a sedated echocardiogram and follow-up consultation with the cardiologist. The echo will allow the doctor to see her heart again, confirm the presence of the holes, and if they are there, schedule the surgery. He agreed with me that there really is no point in waiting longer; she weighs well, she's old enough, and he understands we'd like to move forward before she gets any worse.

I have to say, I had the distinct impression a couple times today that the doctors didn't really believe me. Apparently it's really unusual for symptoms of heart failure to come on so quickly. It's strange that her rapid breathing is not all the time, just some of the time...apparently. But I'm finishing this evening with a little girl who should be eating 25-30 ounces a day, and took only 16 all day today (and let me tell you, that's only because I offered her food every single time she woke up, even if she wasn't asking for it). I sit typing at the dining room table with the monitor next to me so I can hear Moriah as she sleeps in my bedroom, and her breathing is so loud and so quick I know that something is wrong with her (earlier tonight, I counted 93 respirations in a minute, and anything over 60 is fast). So maybe it's not classic heart failure. I don't know what it is; I'm not a cardiologist. But I AM a mother, and I know when my daughter is fussier than usual, less hungry than usual, more tired than usual...and I know when my heart is breaking as I watch her. This for me is the "loudest" symptom of all.

I've been reading another book, Expecting Adam, this week. It was sent to me from my Dad and Vicki, a memoir by a mom whose son has Down syndrome. It seems this is the only way I can take in information about Down syndrome since Moriah's birth...through stories. I have yet to open one "informational" book from the library stacked in the pile in my dining room. But this book, Expecting Adam, so well describes what I think, and feel...it is like meeting a friend, and it feels hopeful and healing. It is also hilarious, and a wonderful memoir on motherhood in general. It has been a great gift in my life in this last week, bringing light when I couldn't see too well.

Also a great gift...the unexpected graces of "daily bread," and I mean that literally. We had three people bring us bread on Friday...I felt as if God were reminding me to trust for daily, moment-by-moment provision, though it was such an obvious metaphor it made me laugh aloud. Then, as I typed this blog post, a friend called about carpooling tomorrow, and prayed with me, and I felt the reminder again. Daily bread. God's presence, just when I need it. Grace for now.