Wednesday, May 13, 2009

The pedi appointment

We went to her regular pedi yesterday afternoon. He said, like some of you have said that it very well could be the CF. I am getting WIC right now so I have the formula they want me to use, but I also breastfeed too. A pediatrician must be able to show WIC that they have tried other things before writing a script to change the formula to something else, which is fine by me. He wants us to feed her 2oz ever 2hrs. He said at night wake her up every 3-4hrs, so I've been feeding her 3oz for those longer stretches. He said if she isn't satisfied to add a little rice cereal. I guess I have got to exclussively pump. Ugg, I hate pumping, it's so much easier to just plop her on me breast, plus it's so sweet and she's just so adorable feeding. I'm not sure if I'm ready to completely sacrifice that just yet. Now, he told me that if the CF doctor wanted to change the formula, he could do it no questions asked, since of course he's a specialist. So, we are doing for a week. If still problems, then we will swith for week, then if things are better we will switch. He is also setting us up with the genetic counselor. I asked why, since we had already met with one, he said so we will know the exact mutations and stuff. I explained that we already knew that. The previous genetic counselor talked to us, as well the CF doctor talked to us. There's not much else they can say, not in my opinion. But he's wanting us to meet with one. I just hope he isn't going to send us back to the same one, she'll think we're crazy. Oh, well maybe he has a reason that I don't understand right now. All in all it was a good appointment. Since the doctor's are all in a practice, I've liked all of them, but one. This one is the best though, in my opinion. He seems to understand CF, a little more than the others.

The rash was a viral infection that will go away on it's own in a week or so. No need to worry about it.

She weighs 8lbs15oz, she'll be 6wks on Saturday. So maybe she's small, but she's growing.

Update on feedings: She is still very skirmish even during 2oz feedings and she moans and breaks my heart. I took the asymptomatic and ran with it...maybe I jumped the gun and was too optimistic. After she eats she has to sit up for a while. No acid reflux or anything, just laying down back or stomach puts her groaning real bad then a pain cry.

Breathing question: Her lungs are fine, but is it normal for babies or CF babies to breath hard a lot?

This is hard b/c despite babysitting I really don't know what is normal for typical babies, muchless CF babies. I just assume it's all normal which is where we run into problems.


The Dorns said...

We had to supplement with formula as well. I'm not sure if you have heard of this beofr but the lactation consultant I sw said newborns should not be give formula made from the powder mixe instead they should drink the ready-to-feed liquid formulas. Maybe that will help. Im not sure if WIC approves that. I would definetly offer the breastmilk to so that will help her immune system. Do you notice more fussiness after a formula feed or a breastmilk feed? Just a thought. I had been pumping every two hours around the clock trying to get my milk to come in and then syringe feeding it to my lil guy.

ssbean said...

I have noticed that she is way more fussy with the formula. However breastfeeding doesn't satisfy her and she's hungry before he 2hrs is over. The only thing that satisfies her is the 2oz formula w/ cereal, or breastmilk with 2oz of formula soon thereafter. I think I'm gonna put a call into my lactation consultant.