Look how far we've come

Friday, September 26, 2008

Lillian got all caught up on her shots today, she got her 6 month set. No more until she's 12 months, yahoo! We go to the health department to do them, it's free that way. Free is always better than not free.

When we got there, I figured - hey, they have a scale, let's stick her on it! And you know, I've done the math, obsessive mom me. Dr. Simon said back at the beginning of this mess, they like their "heart babies" to gain anywhere from 15 to 17 grams a day at least (0.52-0.59 ounces) and that normal babies can gain up to 30 grams a day (about an ounce). At the beginning, Lily was gaining anywhere from 15-21 grams a day, and then in the two weeks before surgery, when she was her worst, failed to gain any weight at all.

So today, I knew that since she was 15 lbs 9 ounces on Sept 5th and it's been 21 days, that the bare minimum of 15 grams/day would put her at 16 lbs 3.5 ounces. That was the target, but she's been doing fairly well and gaining at a good pace, I figured it would be more. At least, I hoped.

She was.... 15 pounds, 12 ounces. She's gained a whopping 3 ounces in 3 weeks. I even asked the nurse if that was right - could the scale be wrong? Nope, it was calibrated two weeks ago. Awesome.

That is a full 7 ounces less than the minimum she should have gained... wtf. Since she eats like a pig and gobbles up 6 ounce bottles and inhales whatever solid food she gets with a big sloppy grin... something's not right.

This means one of two things - something's wrong in her intestines that is preventing her from absorbing the nutrients and calories, or her heart is getting worse again, and rather quickly at that. This is a very sudden drop off, she'd been gaining well all the way up into early September. Since she has no reflux, she doesn't act like eating is bothering her, and she has no history of GI problems other than some constipation, my money is on the latter of the two - why would something develop out of nowhere so quickly?

So I've got calls into Children's Mercy and our pediatrician - he returned my call and his nurse wants us to see the GI specialist at CMH... not sure what good that would do. But whatever. What's another test, really. I didn't hear back from CMH today, my call didn't get in until 4pm and my doctor switches hospitals mid-day, she was probably at the south side clinic already. So I get to sit and stew all weekend - will she want us to increase the calories in her formula again, will she want us to come in sooner... etc. Is my baby going to keel over in front of me someday?

Like Robin Williams says, I need a drug that encompasses everything... f**kitall. Maybe they could market it as Fucitol. When you don't want to leave a warm bed on a cold dark morning... Fucitol. When you don't want to go to work... Fucitol. When you don't want to eat or drink... Fucitol. When you don't want to face the bad news that you know is coming... Fucitol.

Wasn't surgery supposed to fix this? I am really at a loss for words tonight, and I don't know why.