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!