Thursday, January 29, 2009

Stumped

Our OT is "stumped." Her word. Not mine.

She just left. (OT is usually on Tuesdays but since mother nature took an ice-dump on us the last few days, it got pushed to today.)

She said she's stumped. Essentially he doesn't display any of the usual behaviors that come along with food refusal. He doesn't have an oral aversion, he shows some mild sensory stuff but they don't come with oral defensiveness like they usually would. He "looks greats." (If I had a dollar for every time someone has said that in the last 8 months...) He's essentially on track developmentally (rolling still eludes us, but everything else is fine.) He isn't sleeping too much (quite the opposite lately considering he's up and hungry every 90 minutes.) or lethargic. He isn't writhing in pain when he eats or shortly after.

She just doesn't know.

He was due to eat while she was here and she tried to feed him. He behaved exactly as I described. Stomach growling, starving, roots for the bottle. Sucks down 10cc immediately. BAM! STOP! No more.

He eventually fell asleep and over the next half hour I managed to get another ounce into him. That little bit felt like a victory. Quite sad that an ounce and a half feels like success when he really should probably be eating more like 4 ounces at a time. But I take what I can.

I told her that I asked for a referral to another OT for a 2nd opinion. She was supportive of that. I told her about the doctor's plan that if the new formula (which should be in today) doesn't work to admit him for a work up and she thought that might be good, too.

On the one hand- it's good. I mean, less problems are good, right? But on the other hand- WHY THE HELL WON'T HE EAT?!

He's nothing short of an enigma, I suppose.

Right now I'm trying to mentally prepare myself for a hospital visit. I dread it. I feel like we've spent enough hospital time that I should never have to see one again. But I know it's the best shot we have at answers.

At least this time I'll get to pack first.

Then I'm trying to tell myself there's a good possibility they won't have answers and may suggest a feeding tube.

I keep trying to figure life out that way. Will we be able to get childcare? How long will he need it? Will he ever outgrow it? Maybe we'll put it in and a week later he'll start eating again and my guilt-spiral will spin out of control.

There are so many questions and not many answers.

I'm trying to take things day by day- even hour by hour. But it's so frustrating.

I just want him to eat. There doesn't seem to be anything standing in his way except his lack of desire to do it.

We're all stumped.

--Trish

11 comments:

Kim said...

I wish that things could be different.. for you and Robbie and M and I, and all of the babies/mommies out there who have to deal with this crap. It's not fair, and it's stealing time away that we worked so hard to have in the first place. I hate it.

No matter what happens, I'm here for you whenever you need to talk/scream/cry/vent. I'm not sure when or if the answers will ever come, but I'm glad that they're at least trying to figure it out.

ivory and jamie said...

I'm sorry Tricia :( I keep praying for you to find some answers and finally be able to have a little peace (and sleep!), I hope all our prayers are answered soon :(

Fertilized said...

I am just sorry

Heidi said...

Tricia,
I just hope you have your answer soon. I hope the new formula works. I hope that the 2nd opinion has the answer. I hope that you do not have to go to the hospital.
Sending you big hugs,
Heidi

Anonymous said...

I'm sorry :( I have a question and I know that you probably gone this route but just in case, because I don't remember reading it - I was wondering, could his ears/glands hurt from sucking? I am so sorry if this is elementary and I certainly do not want to insult you but trying to think like a baby I guess! Good luck, he's so sweet and you are just amazing...I had preemie twins and thought I had it rough - but at least they ate! I can't imagine what you are dealing with. I think of you often and I hope things will turn around soon...sorry that sounds lame but it is heartfelt :/
Patti B.

Rachel said...

Just wanted to write that I'm thinking of you and sending Robbie all my 'must eat now' thoughts. I really hope your pediatrician finds a more feasible plan of action for you soon.

Trish said...

Patti- I honestly have no idea. I've wondered the same thing. I don't think it would be from SUCKING.. simply because he LOVES to suck on his paci. but perhaps from swallowing?
All of his physical exams are fine- his throat and ears look good. But that doesn't mean they don't hurt. If only he could TELL US.
it's so frustrating.

Me said...

I'm stumped too. :(

Kristin (kekis) said...

Like you, I wish this could just be FIXED! If I had a magic wand, it would've already become yours.

Just remember that you are doing the best that you can and more. You're in Robbie's corner fighting for him, as you've always done since even before he was conceived.

I hope that doctors & therapists can get to the bottom of this for all of you. Someday - maybe when Robbie's a teenage boy eating you out of house & home - you'll look back on this and shake your head in wonder. Still thinking of you & praying for you all!

Amy said...

Being stumped is the worst; I pray you'll get answers, and soon.

Sarah M said...

Trish, (fellow PAL'er here)...I know you probably have tried this but I wonder if sweetening his food would work? maybe it's just not that pleasing to his (apparently) refined palette? Have any of the drs suggested Karo Syrup in his bottle with the formula or bm? The calories definitely would not hurt him.

Just a thought.

Good luck!