Last week we saw two new specialists and added a specialty (bringing the grand total of specialties to 10 and the current total to 6). I am a big fan of both new doctors!
First, we saw our new ENT. I'm sure you remember that I was never happy with our original ENT, and a few months ago, I finally made the switch. Despite a few awkward questions about my reasons behind requesting a change, we had a good appointment, though we are playing more of the wait-and-see game. Becca was still getting over her cold, so, not surprisingly, she had fluid in her ears. Neither of her tubes are in the right place (though they are both lodged in her ears somewhere), so neither is functioning. The question, then, is whether her ear is normally draining the fluid on its own but was having trouble because of the cold or if she still needs tubes. Dr. Goudy (who is, as everyone said, quite nice to look at ;) ) wants to wait 10 weeks and check her ears again and give her another hearing test (the kind that she keeps failing even though we know she hears). If the fluid is going to drain on its own, it will have done it by then; if not, we need a new set of tubes. At this point, if they give her a new set of tubes, they will go ahead and remove her adenoids as well. Apparently doing so reduces the risk of needed a third set of tubes by 50%. Hopefully, though, when we go back her ears will be clear, and we'll avoid another surgery.
The next day we hiked all the way down to Cool Springs (which won't be much of a hike next month!) to see the gastroenterologist (which, by the way, I think I just spelled correctly on my first attempt!). We had waited four months for this appointment, and if we wanted to be seen at the main hospital, it would have taken another two months. That's annoying. Six months is a long time in a toddler's life, especially if the kid in question is itty bitty and not growing well. This is my message, then: pediatric gastroenterologists, please come to Nashville! Save our FTT (failure to thrive) babies and make bookoos of money at the same time!
It was definitely worth the wait and the drive to see Dr. Moulton, though. He might be my new favorite specialist. After waiting two miserable hours at the ENT the day before, I came to this appointment armed with my netbook and an Elmo movie downloaded to iTunes. (Why is it that specialists are only available during naptime? Seriously, it wasn't even a scheduling issue - the ENT's only in the clinic in the afternoon!) I was afraid this was going to get particularly ugly, as we had driven directly from an hour of physical therapy. I was seriously tossing chicken nuggets back to her on the way there; it was just that kind of day. However, they had us back in a room before I could even finish filling out the initial paperwork. After the nurse got Becca weighed in, etc (at a chunky 15 pounds, 10 ounces - back to where she was before the cold), I asked her to watch her for a second while I made a quick run to the bathroom. (It was my first chance since leaving the house several hours ago - add that to the list of things I didn't realize I would miss when I became a mother!) By the time I got back, the doctor was in the room, pulling her chart up. He introduced himself, shook my hand, and said, "Tell me about Becca's prior medical history."
That took some time. And he listened the entire time, nodding and making "listening noises" while typing it all into the computer. Good thing they weren't already running behind. I had a lot to say. I mean, remember when we first started talking about growth? Oh yeah, in week seventeen of the pregnancy. That would be...let me count...784 days ago. And we've probably talked about her growth every single one of those 784 days. First off, we had to correct a mistake in the computer: some silly doctor along the way had messed up her chart by charting - in her medical record! - that she was born at 36 weeks. If only! Aaaanyway...I filled him in on everything from the crappy placenta (a.k.a. The Root of All Evil) to our current progress in feeding therapy. As I talked, I kept thinking, "Wow, we probably should have gone ahead and seen these guys already!" I think I've been avoiding it because I've been afraid they'd want to give her a feeding tube, and I just really don't want that to happen.
But...it's back on the table.
After listening attentively, Dr. Moulton said, "Okay. You know a lot about all of this. How can I help you?" to which I replied, "Make her grow!" And I begged him not to cut a hole in her stomach. Okay, not exactly, but I did ask if I still needed to be worried about a g-tube...which he thinks could still be an option. Poop (but more on poop to come!).
Basically, we're now trying to answer two questions:
- Is she getting enough calories? She needs around 700 calories a day. By my estimation, she's drinking around 500 calories a day (in her formula). That leaves 200 calories in other food. I can eat without even realizing it, but that's a lot for her. Plus, you have to subtract anything she throws up (which still happens every few days). I think she's getting enough calories at this point, but we haven't been tracking it. Dr. Moulton is having us keep a food journal for three days, which his nutritionist will analyze (and is giving me flashbacks of my Weight Watchers days). If she's not getting enough calories, we'll likely explore the g-tube option some more. (I don't think it's as simple as whether or not she got 2100 calories in the past three days, but the journal will be a starting point.)
- What is her body doing with the calories she gets? To start to answer this question, we're heading in to Vandy tomorrow to have an upper-GI study done. Basically, Becca will drink some glow-in-the-dark milk, and they will take pictures of what happens as it goes down. It should be a pretty simple process and will give us a pretty good idea as to what is going on with her reflux these days. But that's not all! In order to look at whether or not her body is processing her food appropriately, they've got to look at what goes in and what comes out. Yep, we're collecting poop. We've got to take it in tomorrow, but the little princess has decided that she doesn't need to poop today. Little punk. I actually want her to poop, and she won't. It's like being back in the NICU. Anyone have an itty bitty glycerin suppository? Perhaps she'll poop in the morning, but since she can't have anything to eat or drink, I'm guessing we'll have to make a special trip in to town to deliver a Tupperware full of turds. (Pardon me. I just had to say that.)
There you go. The point, I guess, is that she's still not growing as well as they would like, even though she's been picking up lots of steam these past several weeks. She's jumped into 6-9 month clothes (though we still have a few favorite 3-6 month outfits in the mix...I have problems with change), and she's definitely looking more and more like a big girl. And she's eating better, too (not great, but better). Today at therapy, she had 15 blueberries (her current favorite), 2 chicken nuggets, 2 strawberries, 9 craisens (which, by the way, the Blogger spell-check wants to changes to "craigslist"), 3 grapes, and 3 blackberries. That's a great meal, right?! Even when you include her recent growth, though, her overall weight curve still isn't making up much (if any) ground in relation to typical growth curves. I'm not talking about getting her from the 10th to the 50th percentile...I'm talking about still being several pounds below the 3rd percentile for her adjusted age.
It will be interesting to see how all of these tests come out. We'll see Dr. Moulton again in two months (supposedly - though they "don't have his schedule that far in advance" even though I booked our initial appointment four months in advance - weird, but now they will have to deal with me as a return patient if they try to put us off for another four months - and you know mama won't play that game!) and should get the results of the tests in the next little while. (I mean...not that I'll be calling every day until they tell me something...no, not me...) We'll also see a nutritionist at our next appointment, and I think we'll also go ahead and see the nutritionist in the NICU follow-up clinic next month, too. John and I would still really like to avoid a feeding tube, but every mom that I've talked to who has made that decision for her child has been glad they did because it allows you to relax about their food and nutrition, etc. But still, she's collected enough scars in her sweet little life. And if we were going to get a feeding tube, it would have been nice to have gotten it when she was a baby and waking up at all hours of the night to eat. It kind of seems like we'd be backtracking to get one now when she's making improvements in her eating...but we'll do what we need to do. But seriously, please don't take a scalpel to this pretty belly!
p.s. In other news, we are doing the final walk-through on our house after the study tomorrow, and we close on Friday! Wow!