Wednesday, December 17, 2008

OT Eval take II

Our team of OTs just left.
Our specific therapist (Karen) came with the head of the place (Trish.)

Trish pretty much said the following:

-she doesn't think it's an oral aversion. She agrees with me that he LIKES to have his face and mouth messed with. He enjoys a pacifier. The trouble is with EATING, specifically.
-she thinks it's reflux and general digestive discomfort. He has a lot of gurgling and gas while he eats and is definitely still refluxing. She thinks the meds are working to keep the reflux from burning, but that doesn't make it any easier for him to swallow while stuff is trying to come back up.
-generally, he has so much going on in his digestive system that he just can't focus on eating.

She suggested the following:

-swaddling to eat even though it pisses him off. It just helps him organize and focus.
-thickening his milk with Simply Thick
-a warm compress (probably going to get a Happi Tummi) for his tummy to help with gas
-improved stomach strength so he can bear down and move things along better
-wants me to talk to the GI doc about possible dumping syndrome
-trying distraction while eating. Suggested baby einstein videos as a way to keep him focused on something else. She wasn't thrilled with the suggestion since we don't want him hooked on TV, but that's something we can wean him off of later.

All of that is fine but I need to find out how Simply Thick affects the life span of my breastmilk. If I thicken 3 oz of breastmilk and he only eats 2 can I still reheat that remaining 1 oz for the next feeding? Right now I can.

I don't have an oversupply of breastmilk. I only make 20-22oz of breastmilk a day at this point. His food goal for the day is 19. He sometimes eats 20 or 21 oz (a good day, obviously) so if I have to start pouring out breastmilk, that's going to be a problem.

Karen thinks it's more like gelatin than anything and shouldn't change anything, but I need to know.

And as a side note, Karen thinks it's possible he may have thrush. There is a small white spot on the back of his tongue but it could be milk. But since we see the pediatrician tomorrow, I'll have them swab him.

The feedings through the night went well. (And he slept well!) but the feeding we tried to give him while they were here was........stressful. Of course, it's hard to say how much it was affected by strangers in the house etc.

Trish finally got him to take about 2 1/2 oz. That's how she really evaluated him. But at least she got to see what I'm dealing with and was very sympathetic.

We also discussed dietary changes for me to make him less gassy. Which honestly almost made me cry. She was suggesting a no carb diet.

Can someone tell me what the hell I'm supposed to eat?

Between his gut and my gallbladder, I honestly don't know. Low fat, but high protein, but low carb with no dairy. So.. lettuce with some grilled chicken on it? I don't get it.

For now, we're ignoring the dietary thing and trying the other stuff. If we get back to the dietary stuff, I'm going to insist someone give me a menu of what to actually make because honestly, I just don't know. I'm willing to give up anything for him, but I have to eat SOMETHING.

Can someone please tell me when he's going to outgrow this?



Anonymous said...

Trish-Keep up the excellent job with Robbie and hang in there....My prayers and thoughts are with you and Robbie and hope the OT therapist is right about Thrush....that is pretty easy to fix.
My suggestion about the breast milk saving is....measure out each ounce. One at a makes it so you have less stress about your milk supply on hand, but maybe a little more work. But I know the Perfect and Wonderful mommy TRISH can do it. (Measuring one ounce at a time helped me when my son was having feeding issues too, and when I was having milk supply issues)
GOOD LUCK and my Prayers are with you and Robbie!

Amy said...

Glad they were helpful and sympathetic; praying these suggestions help! (And glad he ate and slept well last night.)

I was on a pretty much zero-carb diet, then gradually reintroducing carbs, for a total of 9 months at one point b/c I had candida in my intestines. I'm not gonna lie, it was a challenge. I didn't have the low-fat restriction and I don't remember much about dairy; I think I could only have mozzarella or one other type of white cheese. Or milk, which I didn't drink anyway. If you do have to start it and want suggestions, let me know. But yeah ... a LOT of salads (with chicken or something), for one thing. Eggs for breakfast. Maybe the recipes in the book The Carbohydrate Addicts Diet would help if you do have to go that route.

Mrs. Spit said...

Ok, low carb high protein with low fat is actually not going to work for you. It's really not possible, and you will wind up vitamin deficient.

So, can you eliminate white stuff? Flour, rice, pasta, you get the hint.

Wipe it out for a few weeks, and then start introducing whole grain bread (try things like spelt and barley and oats), whole wheat or even corn and rice pasta, and brown or wild rice pasta.

I believe in you. You can do this. It will end.

Mrs. Shoes said...

I don't have any answers, but just wanted you to know I am so sorry you are having these challenges.

FattyPants said...

I have dealt with thrush for both of my boys. It is triggered by simple carbs in mom, however since you are bfing you should not cut carbs completely. I would just try taking out breads and sweets and see how it goes. It took a little trial and error but our thrush was triggered by bread and bananas. I could still eat (small) portions of pasta and starchy veggies like peas and carrots. This must be so frustrating for you, but you should be proud of yourself for sticking with breastfeeding. It will get better.

Tracy said...

It sounds like they understand what you are up against instead of just writing it off to normal premmie oral aversions.

I hope it doesn't come down to more dietary changes for you!

Lots of prayers for you and Robbie.

Kristin (kekis) said...

I'm sorry it's still so rough. One would think that you just feed a baby, and he'll eat. Unfortunately, it's NOT that easy. I know you're struggling right now. Remember that this too shall pass, and you'll back on it and wonder how you made it through. You'll make it through just like you have all the other hurdles before. It won't be easy, but I know you can do it. You're doing the best you can, and Robbie knows it.

Intrepidgirl said...

Hello there (from a lurker). Wow, hang in there! I just thought I would comment about the dietary restrictions. I'm on a no dairy diet (also no nut). My baby had what I thought was reflux and so when he was 5 weeks I tried eliminating all dairy. He improved immediately: no more screaming! My life changed and all of a sudden I had an angel baby. We even tried a half oz of milk-based formula and he screamed for 3-4 hrs. So we have determined that it was the (cow's) milk and are sticking to my breastmilk with dietary modifications. I read online that dairy can also cause reflux. (Sadly I had to throw out all my frozen breastmilk up until that point)

As far as what I eat, milk, yogurt, cheese, butter, ice cream, cream, etc. I also avoid most soy too (unless it's soy sauce because that seems to be fine). A lot of soy has been messed with (like in soy milk). For example, I have rice milk with my cereal. I eat a lot of vegan products just with meat added. Believe me: it's not a sacrifice when I can have a sweet, happy baby.

Everytime I try to reintroduce milk, we have trouble. However, I can have some baked goods that contain milk products because they were heated up to over 350 degrees, which seems to change the properties. BUT I can't have milk that was heated up just over boiling (like a cream based soup). He will scream!

Stopping eating dairy products has dropped most of my proteins out of my diet. So now I eat more meat than before. I also eat more fruit and veggies and other whole foods. If you can eat peanut butter, then you can still have some good fat and protein. (My baby gets rashes from nuts!) I eat seeds like sesame and pine nuts.

Good luck to you! Really, a no dairy diet would be an easy fix.

outdoorgriller said...

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Cheryl said...

Simply thick just thickens it a little like when you are making instant pudding and at the VERY beginning you see it start to thicken. My twins have used it for about 6 or 7 weeks. Works well with swallowing and choking issues

Anonymous said...

Hi Trish,
I've been a long time lurker. On the carbs issues, do they mean carbohydrates, or wheat (gluten). It would be easier to cut out gluten, as there are lots of other products that you can buy to replace them (gluten free pasta, bread etc). The taste and texture are a bit different, but you do get used to it.
Good luck