All About Food

It's been a rough week for us....and once again it revolves around feeding Samuel.  We decided to stretch out the time between bottles.  We hoped that he would get hungry and learn that the bottle is a GOOD thing.  I STILL did not see any feeding cues.  Never cranky or fussy (unless he hit himself in the head with a toy...lol.)  In the end, we were only getting in about 24 ounces a day.  Not great, but I was willing to let him have a bad week in order to learn that the bottle is OK.  However, it seems that our experiment backfired.  Instead of liking the bottle more, he learned that if he threw a fit, that he wouldn't have to take it.  For two days he ate nothing (except a jar of baby food) from 3pm in the afternoon until 9am the next morning. 
I took him in to see his pediatrician but we didn't get any answers.  It looks like Samuel is as healthy as can be.  He has lost 6 ounces this week but his overall weight gain for the last month has been acceptable so no one is going to do anything to help us.  My worry is that it's going to take him being hospitalize from dehydration before a plan is made.....a plan that I feel should have been put into motion when all of this began back in November.
When I posted on Facebook this morning for prayers, many of you asked questions or suggested things.....so I'll give you a breakdown of what he eats now and what we have tried.

How things stand:
When he wakes up in the morning he doesn't want his bottle so I give him about 3/4 of a jar of fruit and oatmeal.  I put the baby cereal puffs on his tray at every meal.  He's not coordinated enough to get them in his mouth but he will pick them up and give it a try.  About 9 or 10am he takes his bottle (about 5 or 6 ounces.)  Around noon, I give him about half of a jar of vegetables.  2 or 3pm he gets his bottle again (about 5 ounces.)  That's usually the last bottle he wants to take before bed.  I give him another meal of vegetables and fruit around 7 to hold him over for a few hours so we can sleep.  In the past, we've been able to get in two bottles when he sleeps (around 10 and around 4) but recently he's been throwing a big fit and hasn't taken them. 

What we've tried:
Switching bottles
Switching nipples
Changing to a sippy cup
Changing to a regular cup
Putting something sweet on the end of the nipple
Cutting the nipple bigger
Changing formulas (he won't accept any other formula though)
Increasing and decreasing the thickener (Simply Thick)
Changing reflux medicines
Distracting him while feeding (with tv or something)
Keeping everything quiet and calm while feeding
Feeding more often with smaller amount
Feeding less often with larger amount
Keeping him upright after feeding for an hour (to help with reflux)
Keep his system moving with Miralax
Using a different soap on his bottles and things

We are having more success with baby food.  He really enjoys the baby MumMums - and he's getting better at eating the cereal puffs.  He's not interested in mashed bananas or avacados - the lumpy food makes him gag.  He's very interested in what is on our plates.  I'm going to try making my own baby food (store bought baby food has a lot of water in it.  Samuel actually does better with thicker baby foods AND if I can make it without as much water, he will be getting more calories.)

Possible causes:
I think every medical professional I have ever spoken with attributes his issues to reflux.  I'm not convinced even though we continue to treat it. 
There is also the possibility that his constipation his causing him to be so backed-up that he doesn't want to eat.
He could have a metabolic problem (I don't know much about it, but apparently these issues are common with micro preemies.)
As mentioned a thousand times, he could have an oral aversion.

What now?
It sounds like we are going to have to wait.  The nutritionist at ACH has bumped his formula up from 22 calories/ounce to 24.  I'm trying to get in as much baby food as I can.  We go to ACH at the beginning of March.  I'm thinking he REALLY needs to have speech therapy (which will help with an eating aversion.)  He has an appointment to have an upper GI done at the beginning of April.....that will tell us if he is having reflux issues.  I don't know what else to do until then except pray, pray, pray for him.

Last night, after a very unsuccessful attempt at the bottle, I imagined myself back at ACH with Samuel for 'failure to thrive.'  Once again I was a NICU mom....my entire identity wrapped up around my sick child.  It scared me.  Scared me so bad that I didn't sleep for hours.  A voice in my head kept saying "I can't do this again...I can't.  I can't handle this."
And then I realized that it was most certainly not God telling me that. 

"In MY weakness, HE is strong."  It's my new mantra...after a few minutes of praying that, I fell fast asleep.