GI Appointment

Sorry about the delay in posting. I hope you know by now that even though I always have the fullest, most honorable intentions in saying I will post at a certain time (or call at a certain time--S.B., K.H., M.B., T.H.--you guys are probably nodding in agreement right now), I am not always able to follow through with that. I think it may have something to do with 2 high maintenance children and an equally high maintenance dog, but you know how that goes--excuses, excuses. Regardless, I had hoped to post last night and just plain didn't get to.

The appointment with the GI yesterday went well. I don't know what I was expecting, but on the way up to Fort Worth, I started feeling incredibly sick about what he might say. I guess I thought he was going to want to put Camille back in the hospital again, and I just couldn't take that. Well, I guess I could, but it would be really hard. Jason and I have learned through all of this that saying we can't handle something is really a false statement--we can handle anything if we have to. That's what we keep telling each other--that whatever happens with Camille, we can handle it simply because we have to. Anyway, the GI doctor was very nice and very thorough. He started off by explaining what we already knew--that Camille is way under weight for her age and height, and has not been gaining weight at a normal rate. Her weight is still way off the growth charts (meaning, not even on a percentile, even at her adjusted age) and her height is just touching the 5th percentile, if you use her adjusted age. If you use her "actual" age, then she is way off the growth charts--not even on a percentile--for both height and weight. He then went on to say that even with all of that, what is most concerning to him is that her weight is way under what it should be for her height.

So, after hearing all of our descriptions of what has been going on with Camille, everything we have tried from all of the different types of formulas to all of the different types of reflux meds, he said that he wanted to try this last kind of formula first, and see if that helps with all of that (weight gain, poor sleep, fussiness, etc.). The formula he prescribed, ElaCare, is completely hypoallergenic (meaning she cannot be allergic to it), and is the most broken down formula there is. He said that most of the babies that he sees that are having trouble like this either have an allergy to the formula, or are unable to break down the proteins in the formula, or both. This formula would take care of both. But, you might say, we already tried the broken down formula and it didn't help--in fact, it seemed to make things worse! Yes, good thinking! I said the same thing! He said that the Alimentum formula that we tried was broken down, but it was broken down to more like basketball size proteins, and this one is broken down to more like golf ball size proteins. (This doc had a lot of good analogies, by the way. I appreciated that.). So, he wants us to use this formula, mixed at the regular 20 calories (so that we don't have to wonder if the concentration is bothering her too), and then come back in 4 weeks. If her weight gain isn't much better, then he wants to start looking for other things (i.e. CF, etc.). He said that most of the babies he sees do respond to this, and so if we can fix things with this, then we are saving a bunch of time and money not running tests on all of those other things. If we can't fix it with this, then we have to do the other tests.

In case you are wondering, and I'm sure that any males that might happen to read this blog are, the ElaCare formula--yeah--liquid gold. For a case of it, meaning 6 cans, that'll run ya about 200 buckaroos, plus shipping. You should have seen Jason's and my dad's eyes pop out of their heads when they saw that online. Oh yeah, did I mention that you can't buy it in stores, but can only order it online? It's a good thing Camille is so super cute!

We also have to collect Camille's urine today because the GI wants to test that as well. Not sure what he is looking for there, but what I can tell you is that (a) it is not easy to collect a baby's urine, and (b) it is not fun to collect a baby's urine. You might be wondering how one would go about doing this. Hmmm, okay, there's this bag, and you are supposed to somehow attach it to your child, and.....well, let's just say that our first attempt did not go well. Jason actually told me to go look up on the Internet how to do it better because the nurses instructions left a lot to be desired.

The most discouraging part of the appointment for me was that our GI doctor mentioned that it did appear that Camille might have some physical features that would indicate a genetic syndrome. Even though it was slowly starting to dawn on me that this was more than likely true, and even though we were already going to be meeting with a geneticist in November because we knew this might be true, it was still hard to hear yet another doctor mention it. I guess we just have still been hoping that somehow in all of this, she can still be "normal".

So, if you wouldn't mind, you can pray for the following:

1. That Camille would eat her new formula well (so far, she has mainly refused it and has eaten very little. I think the poor girl is so tired of all these switcheroos!);

2. That this new formula would help her slow weight gain and other issues;

3. That we will be able to actually collect her urine for her urine sample without too many mishaps :) ;

4. That Jason and I will be at peace with whatever comes in the future for our sweet girl.