Sunday, April 19, 2009

Not so Zen

Is trying very hard to be Zen an oxymoron? Irony? Or something?

Because I'm working very hard to be Zen about Robbie's eating. But I'm really struggling.

Today he ate 10ml (that's 1/3 of an ounce) of milk by mouth.

I managed to trick him into maybe a 1/4 of a stage 2 vanilla custard with banana. (The tricking: Basically I dip his pacifier in. Then I make him laugh and shove the spoon in. If he fusses and opens his mouth, I shove a spoon in then, too.)

The thing is, he seems FINE with the food being in his mouth. About 90% of the time, if I can get it through his lips, he'll swallow it. When he gets fed up with me (or full, maybe?) he starts spitting it back out. Mostly he'll swallow anything I put on his tongue. The problem is the lips. The lips purse up tightly. And the head. It turns and twists and pulls away. The lips and the head, they are my enemy. The tongue, the gums, they are my friend.

And I know that there is good in this. The therapists tell me his oral skills are excellent. He CAN eat.

I discussed the NICU clinic and feeding clinic's findings with our home OT this week. She concurs completely. (She was also irritated with the neo's insistence that no eating = no talking. She agrees that his verbal skills are excellent.)

Everyone agrees that he's learning to use his mouth just fine.

BUT DAMN IT, I WANT HIM TO EAT.

It is so hard. He literally sees the bottle and cries. That lip zipping that he does? As soon as he lays eyes on the bottle.

Usually I can get him to eat an ounce or so at bedtime. Not today. No matter what trick I tried, he wouldn't let that bottle touch his lips. Instead, he fumbled for the pacifier clipped to his pajamas. He loves that pacifier so much that sometimes I resent it a bit. And then I feel bad because thank GOD he loves the pacifier. He can suck just fine. Oral skills, ya know?

But it's getting to the point that when other moms talking about their child eating, or I see a picture of a child with a bottle or snack in their hand, I'm sad.

Not jealous, even. Just sad.

Maybe it's because I love food so (too) much. I know he's missing out on what should be a joy. Food should be fun. But it's so not fun here.

I work very hard to try to make it be so. We play games with it. I let him dip his hands in at and spread it around. He loves those Gerber Wagon Wheels (even though he spits out any piece of it that he happens to break off.) so he gets them regularly. I sing to him and smile at him even when he won't eat.

I try to be Zen.

Inside I'm thinking Please eat please eat please eat. please, just one little suck. just let it drip into your mouth for a second. please. But outwardly I'm trying to remain relaxed. No pressure. No unhappiness. "See, food is fun!" I say.

But he remains unconvinced.

And the therapists- they tell me there isn't much that can be done. We keep nourishing him through the tube and give him what he'll take by mouth. Keep it fun. He'll eventually grow out of it. I try to believe them. Zen.

But I'm so sad. I know what he's missing out on.

I try to cling to the fact that it doesn't seem to be affecting his development. But I want him to be HAPPY, too. I want him to enjoy the things he should. Instead, it's misery.

Even though he lets me pump the food into his tube, it turns into misery, too. The reflux is horrible. You can hear his tummy gurgling. It squeezes and seizes. His little body tenses up and he moans a little. Even if he falls asleep at the end of a feed, a few minutes later, he'll wake up crying and you know it's imminent.

These days we're averaging about 4 clothing changes every day. Some of mine, some of his. Extra laundry is annoying, but manageable.

But seeing him in pain is awful. He's pretty much maxed out on meds. You can tell it's not the burning of stomach acid. The Prevacid and Carafate take care of that. But the agony of nausea and retching? Not much to be done for that. The only thing that soothes him is to pat his tummy. He looks at me with this look in his eyes as though he's asking "Why, mommy? Why does it hurt? Why can't you stop it?" My heart breaks. I pat some more.

The worst part is that he seems to do so well with solid food. He doesn't heave it back up. He doesn't scream or gag or cry. But getting him to eat it is such a challenge. If only I could get him to understand that if he eats the yummy bananas, he'll feel so much better.

An Internet friend is going to start her daughter on a blenderized diet. Robbie's too young for it now, but maybe after a year adjusted, we'll try it, too.

I know that there is an end to this out there somewhere. And I KNOW it could be so much worse. I look around me and see so many other parents suffering so much. Families with much more dangerous health issues. I know how lucky we are. I thank God for our blessings every day.

But when we have days like today. Today, when he cried and cried and cried and refused to eat. Days when he eats 1/3 of a ounce, I'm sad.

Today I am not so Zen

--Trish

P.S. Don't forget about Robbie's Birthday Pay It Forward. The offers are starting to come in. I can't wait to see the good that can come from Robbie's birthday!

11 comments:

abby said...

Trish,

I know what you are going through since we lived it. My two cents: his reflux is NOT under control and eating is painful. That is why he purses his lips and blocks the spoon. Until you get the reflux (and pain) under control, he is going to do this and he is going to hate food. The question that the doctors (Robbie's, Hallie's, and most anyone else's) don't even bother trying to answer is why is he refluxing. Obviously, the meds he is on are not working. Either the dose is too low, the meds are wrong, or the root of the reflux is somewhere else to be found (food for thought, so to speak: for Hallie, reflux was related to raging food sensitivities and allergies, especially to cow dairy and egg and grain. When we figured that out, switched up her diet, and let her heal, she began to love her bottle and did better with safe foods). The sooner you can figure out stuff, the better, since the medical refusal will (or has) shaded into a behavioral aversion. It took us until Hallie was about 17 months (actual, about 13 corrected) to begin to get at the root of the matter and by then we had some serious food aversions on our plate. She's now 34 months old (so double that age) and is eating SO much better, but does not trust new food and has all sorts of behavioral issues around food. ( I talk about some of this on her blog). Anyway, the sooner that you figure out why Robbie is in pain, the better. And if you want a much better dosing chart for reflux meds, see the link to the MARCI-KIDS (university of cincinnati) on our blog's sidebar.

Becks said...

Lady, (Hi! I'm a lurker! I read your blog all the time!) you have it SO HARD. Bravo.

Before I had a baby three weeks ago, I just didn't get it. I didn't have a clue how much an ounce was, or how much a baby should eat. NOW I have a 3 week old 5lb preemie, and HE eats like 3oz a feeding (when I can get him to eat it!). I know this is a million times better than having a baby who hates food period like Robby, but seriously, my baby HATES my boobs. He sees them coming and he starts to scream. I can only breast feed him if he is sleeping, and ONLY with a nipple shield so he thinks its a bottle. I swear, this kid has an aversion to his own mother.

All that is to say, I get it now. I have a melt down at least once a day, and I have only been struggling with a baby who won't eat for three weeks! You are a trooper lady! AND you are so strong. I can't believe how well you hold your shit together. Go get yourself an icecream sundae or a pedicure. You deserve it mama!

Anonymous said...

I agree with Abby. Has he been scoped for EE or EGE?

Steph B said...

Trish, I had an idea when you commented about how much Robbie loves his pacifier. Have you ever tried one of those medication dispensing pacifiers to sneak some milk in? Munchkin makes one called The Medicator. Here's the link:
http://www.drugstore.com/products/prod.asp?pid=150022&catid=26942

I have one that is still in the package that I don't think I'll ever use. I will totally send it to you if you think it might help. Just email me your snail mail address (ssbuckii@yahoo.com). [BTW, this is wanttobeamom in case you don't recognize my real-life blog.]

I'll keep praying for you all!

Rachel said...

Just wanted to write that we're thinking of you and Robbie. I am so amazed at how hard you struggle every day to do everything possible to help Robbie grow, and I know it must be endlessly frustrating to deal with doctors and therapists who have no idea what you are going through and no good suggestions.

And although you may not realize it, at least a few of the mothers with plump babies (like mine) -are- thinking about Robbie when we're feeding our babies in public. After just a few weeks of struggling with newborn weight loss, I will never take for granted the joy of watching my baby eat and I really hope Robbie gets there soon.

Trish said...

Abby & Anonymous- We know why he refluxes. He was born with a hiatal hernia. It's been surgically repaired twice, but his stomach just isn't normal.

I don't know what EE or EGE is, but I assume the refer to emptying. They tell me he empties well. I pushed for something for motility and was told it wasn't needed. I was skeptical but at our last GI study, the radiologist specifically said he empties quickly.

As for meds- yes, he is well medicated. He weighs a 5.11 kilo and gets 22mg of prevacid/day. That's actually higher than the marcikid site recommends for the max.
He also gets .5ml of carafate 3x/day.

Honestly, they don't know what to do with us. Even our GI specialist has only seen 2 kids born with a hiatal hernia. It's just super rare..

It doesn't even have anything to do with his prematurity (though I'd lay odd that certainly aggravates it) just bad luck. His diaphragm did not form properly when he was developing.

(As an aside: I wonder how much that issue affected his oxygen issues at first. He didn't require much in the way of oxygen for a LONG time, but couldn't expand his chest enough to keep his lung inflated. I'm betting his wonky diaphragm was a big part of that.)

Becks and Rachel- thank you so much for the kind words. I hate to be a whiner (well, a little.) but damn some days just take it out of me.

Steph- I'm willing to try ANYTHING.

I'll shoot you an email now!

--Trish

Alex said...

I can't remember if you've mentioned it here before...but have you tried the baby safe feeders? Let him play with it and gum it if he wants to? Dpes he like popcicles? Healthy home made ones I mean? Sorry just trying to think of anything to get him playing with and loving food.

You are obviously frustrated and rightly so...I think you're doing an amazing job of staying sane with a difficult issue. My sons a very picky eater and only likes breads, yogurt, occasionally cheese and...dessert. He never questions a sweet treat going into his hand and he eats it right away...but anything healthy...he KNOWS and turns his nose up at it without trying it. Its so frustrating. But he nursed well and ate well as a baby...so I count my blessings. And reading what you are going through makes me realize just how lucky I am that at least I know he'll eat something...even if it is just yogurt and crackers. But I hope your luck changes soon and you can figure out what Robbie needs...because you deserve to enjoy his childhood and not feel sad.

Trish said...

Alex- I actually just bought the feeder bag thing today!
I'm going to try it tomorrow.

Anonymous said...

I just wanted to tell you you're doing a great job with Robbie! I'm sure you have this bottle, but have you tried the soothie bottles. They have the nipple as the paci. I've only seen them at Walmart. Once again I just wanted to give you some support! BTW Robbie is a beautiful baby!!!

Adriane said...

I would be not so zen in your shoes, either. It's so great that you blog your thoughts, though. I always read the comments and cross my fingers that maybe someone posted a suggestion that Robbie takes to. (Wish I had some, but I don't.) Hang in there, sister.

Anonymous said...

Thinking of you guys - hope today is better :)

Patti B.

(ps - he is so stinking cute :)