Sunday, March 22, 2009

If You Haven't Got a Penny

"Then a Hay-Penny will do!" I sing that rhyme to Penny all the time. Thanks for everyone asking how Penny is doing and how our specialist visit went.

We went to Children's Hospital and saw an incredibly nice GI. The only reason we didn't have to wait two months to see her (or anyone at Children's) is that we pulled a few strings. Dr. GI spent more than an hour with Penny, Husband and me and was very thoughtful and caring.

Basically, there is something wrong. Mommy, Esq. is not crazy. A baby should not be refusing the bottle like that for as long as she has (looking back at old blog posts I see she started this around week 8-10 [and note the mohawk in that photo and the one below - Husband still loves to style her hair]). The problem is that Dr. GI isn't quite sure what is wrong. Penny presents with a bunch of different possible diagnoses: acid reflux, allergies, swallowing disorder.

The doctor has recommended treating for as many things as possible. Our new plan is:

1. Allergies: Hypoallergenic formula. Allimentum for now; possibly Neocate in the future. Unfortunately I think Allimentum smells foul - like cat throwup. Sorry, P.

2. Acid Reflux: Prilosec. Back to that from Prevacid. Apparently more useful if there is an esophageal problem. P also hates this - I have to hold her nose to get her to drink it and this is after paying an extra $3 (for a $45 bottle) to make it apple flavored.

3. Failure to Thrive: Increasing calories - adding vegetable oil to her veggies and giving her as much oatmeal with formula as she will take. At this point we need to just get her back on the curve. Good thing she loves oatmeal!

4. Swallowing Disorder: Basically she can't handle having the formula pool in the back of her throat which is what the nipple does. Since she does a few sucks and then breaks away from the bottle it indicates this could be the problem. If this is the problem it is a sign that she will likely be delayed in other areas - such as speech. We are going to do a barium swallow test to look at how she swallows. Possible treatments (although not all that effective) are physical therapy and trying other methods of drinking. I have tried to give her a milkshake type drink with a cut up nipple and then just cup feeding it to her but she doesn't like that either. Dr. GI did imply that Penny's odd trait of holding her arms out straight to the sides is probably a sign of strong muscles but poor muscle control - again, a sign that she may develop speech and other coordination slower than most kids.

She seems to be doing a bit better. Just this morning she ate 5.5 ounces in 10 mins - up from 2 ounces at her first feeding (after not eating for 12 hours) over the last two weeks. I was extremely thrilled but since it is the first time I'm trying not to get too excited. Seeing a specialist has made me more optimistic and I sort of wish I had pushed the issue sooner with our pediatrician. Since Penny is such a happy girl (or as Dr. GI said, has such a sweet disposition) it hadn't felt urgent. Can you imagine how happy she'll be once she is bigger and stronger?!


LauraC said...

(I'm not quite sure how it happens that my schedule of checking blogs seems to coincide when you're posting, but I swear I'm very rarely on the computer on weekends!)

I'm very glad you got a diagnosis! And a confirmation that you are not crazy! And my goodness, those eyes and lashes in that oatmeal picture - to die for.

LauraC said...

Also meant to comment the rest of this but got sidetracked with the crazies... it's hard to know exactly what to do with babies. For every story you hear of a diagnosis, there are stories of kids who did not have a problem. I felt the same guilt about Alex's plagiocephaly... many people told me he would grow out of it or his hair would cover it and he would look normal, but I felt like something was very wrong.

I was reminded of all that guilt when I ran into twins at B&N yesterday, one in a helmet. Fortunately I was there with Alex and talked to the mom for some time. I forgot how guilty and worried I felt at the time because now Alex's head is completely normal. And it seems like ancient history to me now that he is ok.

Nancy said...

Wow! What a relief to know that you're not crazy...even if it leads to some things that may present a challenge. Luckily - there's so much help for pretty much everything now (EI rocks!), that she may be a little delayed, but in a few years she'll probably be all caught up :)

And oh man, I agree with LauraC - that oatmeal picture is ADORABLE!!!!

H said...

I would like more info about this in real life:)

Gretchen said...

Can't wait to hear about how this progresses. I can't imagine how frustrating this whole thing must be for you. I'm glad you're seeing Dr. GI (and I always had faith that you weren't "crazy"). Hugs to all.

Anonymous said...

That Penny is so dang beautiful! I know this was a serious post, but I couldn't stop smiling at her adorable little face.
Regarding the content of the post, much of the language was very familiar to me. My mum is a PT and runs an early intervention program, and my sis is a speech and language pathologist. The thing is, Penny has a huge advantage to most of the kids they see- she's being played with and stimulated everyday, and her parents are very proactive. That makes all the difference. Your GI sounds excellent, and if the change in formula and added prilosec don't improve things as fast as you'd like, I would definitely bring in a PT who specializes in babies. Couldn't do any harm and may do a lot of good :) Good work, Mommy Esq. Hang in there.

Boston Chef said...

I'm so glad that you got to see the GI specialist. Hopefully, he can figure little miss cutie big eyes out for you!

Anonymous said...

Good work following your gut! She is a precious little thing and she's lucky to have such a great mom.

Anonymous said...

Kristin, Graham had to go on Neocate b/c his milk protein allergies were so severe. It's awful tasting, but it was amazing how quickly they cleared up. It's crazy-expensive, but you can get your health insurance to pay for it as DME. Call me if you have to go this route.