June 5th - Results!

Maddie seems to have an aversion to things associated w/ eating (holding position, bottle, even the chair in her room where we usually fed her before). Will this go away on its own when her tummy feels better or will we have to ‘fix’ it?
Yes, she has an eating aversion (she's learned that it hurts to eat, so she doesn't want to. This will most likely go away when she finds that it doesn't hurt anymore (due to the changes we're making).


Should we give up on bottles and concentrate on sippy cups?
She's really young to be drinking exclusively from sippy cups. Give it a while and with the new meds and cereal in her bottles - give the bottles time.

Is her tight-sounding coughing and occasional congestion related to the reflux, or is it another issue?
Yes, and they're concerned about that cough, because it signals a worse form a relfux, and esophagus scarring. It should go away, but if it doesn't they'll look at her throat with an endoscopy.

Does formula make a difference in reflux? (no known allergies, currently trying Enfamil Gentlease equivalent)
Nope, formula really doesn't matter. Stay on the Gentlease equivalent for now, just for the sake of not changing two things at once.

Would you recommend any testing? pH Probe? (smell coming from her mouth, we think it’s acidy smelling)
That is most likely stomach acid. Yes, ouch. We'll look at it closer on the upper GI that she'll have shortly.

If so, what would that test entail?
She will drink a barium drink and they'll x-ray her as it passes into her system, looking for the path it takes and the shape of her body, making sure it's all shaped right and how much she's refluxing up.

How many ounces of formula a day do you recommend as the minimum for good growth of an active infant?
25, for hydration and to have her gain weight (still hasn't gained, since April).

To what end do we go to get there? (Force feeding really necessary?)
Don't force feed her. Her intake should improve as we change her meds and make her feel better. Try cereal, be persistent, but don't worry if she won't eat, just try again later.

How much cereal is ok in one day, understanding that we’re only giving her as much as we are to get ounces in her?
Bring on the cereal. The only reason they're concerned about cereal intake is it can cause constipation (not a problem here!) and it can cause babies go gain too much weight because of empty calories (again, clearly not a problem!)

We understand that solids are only for practice at this point, but since she takes them like a pro, will they count towards her nutritional needs?
Bring 'em on. They also add water, which she needs. All those fruits and veggies are nothing but themselves, and water.

Are the doses she’s on of Zantac (1.2 ml twice daily) and Prevacid (7.5 mg once daily) good?
Nope, we're increasing them, and she' s going to get the Prevacid morning and night now. Should help with the evening feedings.

Who will change them as she improves or grows? (You or regular pediatrician?)
CHOP will. (Good. I think my pediatrician is taking this whole baby-won't-eat thing a little too lightly. And mommies don't take that kind of thing lightly.)

Prevacid: are we doing it right? (½ of the little orange bubbles?)
Doesn't matter now, because we will split the pill and dissolve half at dinner and half the next morning, so either way she'll get the full dose in 24 hours.

What timing do you recommend for her medications?
Same as before. Before breakfast and before dinner.

When should she stop taking the Zantac (or should she stop at all?)
She will stop, but not yet.

Can we give her Mylanta if she seems particularly bad?
Yep, if she seems bad, like she's having trouble eating, give her 1-2 ml.

When should we see improvement (Normal = she’ll eat willingly and eat a normal amount for a 6 month old)?
She should eat better in 3-4 days, definitely see a difference by a week.

If things don't improve, what should we do? (Follow up appointment?)
Call in 2 weeks no matter what, earlier if she gets worse.

...I actually felt like they listened to me. I also felt like they'd seen this before, (as opposed to my current pediatrician, who seems nice but had this "Oh! I can't imagine why she won't eat!" mentality). We saw 2 different doctors, and between the two of them we were with a doctor for over an hour. THAT, my friends, is a doctor appointment.

Of course I came home and had an hour an a half to convince my whiney, hungry, sleepy child to actually give in, eat, and sleep. She ate, she didn't sleep. Actually, she took a whole 4 oz. ...wow! Almost called Bob, I was so surprised! But I had such a short time because the handbell choir BBQ was at hour house, at 5:30. Yeah, cause I was sooo ready for that. Hadn't even thought of it, with all this CHOP stuff. So I parked my precious child, the light of my life, in front of a Baby Mozart DVD, and speed-cleaned the house. PS, worked like a charm!

Party went well, and in the middle of it Maddie took another 4 oz. straight. WOW. She also slept through most of it and as a result kept her dear father up half the night.

And then this morning in the shower I remember that it's field day today, and the activity I did with the whole school didn't fly with 1st and 2nd, and I had made a mental post-it to come up with something else to do. And that post-it apparently didn't re-stick itself until 6:15 AM today. Figured that out, then remembered that I was supposed to have the whole school sing a song as part of the opening ceremony today. "You're a Grand Old Flag", right before the pledge. It's Flag Day soon, right? I typed up lyrics, printed, and planned to run copies at school.

Field day went off pretty well. I got a little sunburned, because I prioritized having everything set up by the listed starting time of 9AM over putting on sunscreen. Good example for the kids, I am. What's great is that my station went beautifully, both primary and intermediate grades, 4 & 5th especially dug it.

And PTA approved my stereo purchase, and I get to go buy it. Now, because they want it for the "Sue Send-Off". On Monday. Oh, and you're having the whole song sing a goodbye tribute song for that, right Mrs. D? WHWWHWHWHSJfkofhaiofhfhfhjdshfoksahdfjk afsfsdfj saf swhatthehell? Yeah. So help me, I'm going to publish a calendar and you'll have to write in the events for which you would like Mrs. D. to prepare the entire school to sing for on the first day of school, and that. will. be. it. But the PTA is buying me a new stereo. So they get their goodbye tribute song.

And we had this whole mess with me accidentally waiving prescription coverage for myself and Maddie because I thought Bob took it for us and he didn't, so I had to again call and lay prostrate to the bitch who runs our benefits off. She left me a frosty voice mail telling me there was nothing she could do, but I could try talking to her boss, but she didn't have is phone extension so I'd have to look it up myself. Mmm-kay, you don't know your boss's phone extension number? The boss who's in the room next to you? Riiiiight, bee-atch.

I called and emailed and begged, and then didn't have to anyway, because Bob's school had to re-do their insurance system and everybody has to re-enroll anyway.

I'm barely holding it together at school, I'm so scattered with Maddie-worries, but it's all good. 12 days left. I just need to keep up the appearance that I'm competent and care what I'm doing for a little while longer. We're doing pretty well, actually. By chance, and a friend's help, we get an appointment with good doctors. BBQ goes off beautifully with absolutely no planning on our part. Field day actually worked out. By an insurance company fluke, we have prescription coverage afterall. And Maddie took 5 oz. in one sitting this afternoon. Again, somebody up there is looking out for us.