The Radiologist Dr. Looove consulted agrees that Maddie needs a more in-depth scan. Dr. Loove has opted for an MRI because it doesn’t have radiation (a CT does). I had to call today to schedule the MRI, but it’s not as easy as just calling. I dialed the number and listened for the option to schedule a pediatric MRI. They not only had that option, but there was even an option for pediatric MRI with sedation. I know that the fact there is a phone option for pediatric MRI with sedation should make me feel better – that this is something they do all the time. But it doesn’t. It just makes me feel sad. Because sedation is required, the MRI has to be coordinated with anesthesiology. I should receive a call back in a few days with the time and date of the scan. Yay.
In other medical news, Maddie had another follow-up with the NICU clinic (she’ll have these follow-ups until she’s about three). I wasn’t too worried about this visit – Maddie is doing great. I was curious to see what her stats are, and I was slightly anxious to see what weird thing the doctors decided to seize on this time (last time they said her thumbs were effed-up). Her pulse ox level was 95 (good for her), her blood pressure was normal, and her heart rate was normal. Yay! She’d grown 3/4 of an inch since November, and her head had grown AN INCH in circumference. But her weight. Always her damn weight! She’s been stuck at 14 lbs 15 ounces for the last six weeks. It seems like every three pounds she plateaus. It’s beyond frustrating. The rest of the visit I kept waiting for them to bring up her giant head and little body.
The nurse that took her vitals and set us up in a room said that the doctors were fighting over who got to evaluate her, which was cute to hear. Maddie was in a (typically) great mood, so I could see why that could be the case. Two developmental specialists came in to play with her. The male doctor interacted with her while the female doctor asked me questions and generally kept me busy so I couldn’t be a stage mom. It worked for a while, but soon the male doctor was asking her to point out things like dogs and cookies, and I wanted to shout “she doesn’t eat cookies!” but I resisted. Barely. After he played with her for about 45 minutes, he asked me if she did any “tricks.” I listed off what she could do, and of COURSE Maddie wouldn’t do ANY of them for the doctors. I wanted to tell him i have lots of videos of her performing, but I resisted. We then took Maddie into the hallway so they could see her crawl and pull to stand. I set her down on the floor next to a small child-sized table, and instead of pulling herself up on it, she looked at us, waved, and then took off down the hall. She was OVER the NICU evaluation.
The last two minutes of the evaluation were spent doing typical doctor things – listening to her chest, looking in her eyes, ears, and mouth, and checking her flexibility and reflexes. The doctors kind of bent her legs around a little, and the male doctor tried to hit that reflex spot on her knee with a make-shift knee-spot-thingee-hitter thing. Then they said they were going to talk with the attendings and come back to give their report.
While they were gone, I almost told St. Grandma (who came along) my predictions for problems. I just KNEW they were going to talk about the big head/tiny body thing. The female doctor quizzed me on Maddie’s nutrition for ten minutes so it was obviously something they were keyed on. Which is fine. I’m all for figuring out ways to help her gain weight. But I think giving her at least 24 ounces of pediasure, 8-16 ounces of whole milk, breakfast, lunch, dinner, and two snacks AND ice cream every day is a lot of calories. I’d be rolling into the plus-size store with that kind of diet.
The doctors and attendings (four in total!) came back after about thirty minutes of discussing Maddie. They were very pleased with her cognitive development. She did well at interacting, and they could see that she is a happy and well-adjusted baby. They said that her fingers have improved since her last visit (take THAT stupid thumb loops!) but that she still has a slight gross motor delay (which, duh. Ex-preemie!). Then they danced their way to the enormous head/slight body issue. They said that because she is small with a large head and low muscle tone, they think there might be an underlying genetic issue.
Um, what? Back up there. Low muscle tone?
Apparently when they checked Maddie’s flexibility and reflexes, they decided she had low muscle tone (something called hypotonia). And just reading the wikipedia explanation of hypotonia and how it effects development is irritating me because she has none of these symptoms. So now she has to meet with a geneticist. Oh goody gumdrops, more tests and blood work for my baby!!! I’m so excited, ZOMG!1!! And because of her slight gross motor delay, they want her to get evaluated by Regional Center (again). YIPEE!!!
As her mom, I feel like nothing is wrong here. But I’m not a doctor (I just play one on the interwebs). I’m having a hard time figuring out what is necessary and what is excessive. Where do I draw the line? From MRIs to genetic tests, when do I say enough is enough, stop looking for problems that aren’t there? And what if I draw the line at genetic tests and there IS a genetic issue? My job is to protect her from trauma and pain. Why can’t this stuff be as clear-cut as not playing with knives and scissors? This humongous head is counting on me.