Friday, January 2, 2009

Food Wars Con't

I honestly just feel so beaten down.

When I say Food Wars, I say that because I feel like I'm at war.

I dread every feeding. Even when one goes well, I feel relief. "Three hours of feeling okay about things."

Tonight we had a little victory.

David made a nice dinner (Let me give my husband props. He was incredibly helpful and productive today.) of pork chops, potatoes, corn bread and some "lucky" gross beans black eyed peas.

Robbie was sleeping until 5 minutes before dinner (of course!) And as soon as I started eating, he started licking and smacking his lips, chewing at his hands. It hadn't been terribly long since he'd eaten, so I wasn't expecting him to be hungry, but am always glad to see it. I scarfed down my dinner in less than 5 minutes.

In that amount of time he was desperate for food. I decided I'd try some cereal.

I used about a half ounce of breast milk mixed with maybe 2 tsp of cereal.


And I don't mean he let it sit in his mouth and eventually accidentally swallowed. He opened his mouth eagerly and swallowed quickly. A couple of times he pushed with his tongue, but most of the time, if I didn't shovel fast enough, he got upset.

The whole process took less than 5 minutes. I was floored.

He then took about 2 oz of a bottle.

Euphoria! He ate! He ate!

Maybe there is hope yet!

Of course, a couple of hours later, time for his bedtime bottle, he was hungry again. He scarfed an ounce, then stopped. I managed to squeeze in another 25cc (just under an ounce) and that was it.

My buzz was killed again.

I want solid food to be our magic answer, but he needs the bulk of his calories to come from milk for a good long while yet.

But how do I get him to eat?

It's beyond frustrating to have to basically lull him to sleep in order to get him to eat. And of course, bot TOO asleep, because then he just won't suck at all.

He's gained almost no weight this week- 2 oz, I think. He's only up 9 oz since his last appt 2 weeks ago. I think part of that is the Simply Thick. It's working in that he seems to swallow better and spit less, but I add about 5cc to every 100cc he eats. Since it has no calories, that's lowering his caloric intake by 5%.

I wish there was so magic answer.

I appreciate all of the suggestions and advice everyone is giving. Unfortunately I've already tried 99% of it.

-I gave up dairy.

-I've definitely tried different nipples & flows. You should see the bottle graveyard I have going. At some point I'll take a picture of all of them. It's funny and sad at the same time.

-I've done the chin support and I frequently do the cheek push thing.

-I get up every 3-4 hours at night to try to sneak in as much food as I can while he sleeps. (I need to say one more time- I'M TIRED.)

-I've tried dropper feeding.

-We're not trying spoon feeding.

-I did buy some sippy cups, though I haven't tried them just yet. All of the ones I bought have a valve system and if he doesn't suck on a bottle, I don't think a sippy will work.

-We keep upping his reflux meds in case it's pain related.

-We thicken his feeds.

I just keep hoping he'll outgrow it. Something will click and he'll suddenly like to eat.

If I'm guessing, I think that perhaps he's just in a constant state of not-quite-happy-tummy. You know when you just don't feel great? And you're sort of hungry but the thought of eating really just makes you queasier? You're not SICK, exactly, but your tummy isn't happy? That's what I think he is. Because it seems like he wants to be not hungry, but he doesn't REALLY want to eat. When he's really good and hungry, he'll suck down an ounce or two even when awake (that's RARE.) I think the reason he eats when he's asleep is because the drowsy sort of makes the not-quite-right tummy.

Is it reflux? I don't know. The boy has had way too much stuff done to his stomach. And I can't help but wonder if it's the surgeries that caused all of this.

Before the surgery he ate great. Even shortly after the surgery, he ate great. But slowly it's gotten worse.

The fundo was presented to me as part of the hernia repair. I now know that not to be the case. The fundo makes it more difficult for his stomach to stretch. I can't imagine how it must feel to have your stomach tied up around your esophagus.

And then there's the G tube. It's gone now, but the scar remains. I'm sure there's scar tissue inside as well. God only know how that affects him.

I've had a surgery or two in the last few years. I'll use my knee as an example. Even though my knee hurts far less than it did before the surgery (torn meniscus and bone damage) it still just isn't quite right. No amount of therapy has made it the same.

I'm sure his stomach is the same. Will it EVER be the same? I don't know.

Maybe if I'd researched more when it happened. If I'd listened to MY gut about the G tube. Maybe none of this would be happening now.

Or maybe it would. I'm a member of a few preemie message boards and the sleep feeding isn't unheard of. And not all of those babies had stomach surgery. Maybe I'm just having crazy mommy guilt.

Either way, wondering what might have been gets us nowhere. I know that. But I so wish for answers.

How? When? Why?

At this point I'm wondering how I can go back to work. No one can feed him except for me. Sure, if he decides to eat, anyone can. But I'm the only person crazy enough gauge when he's just sleepy enough to feed. To spend an hour patting him to sleep only to turn him around and shove a bottle in his mouth.

I was planning on going back March 1. That's when my employer stops paying for my benefits. But now? How do I do it?

I'd love to think that in the next 2 months he'll be magically cured. But realistically that's not likely.

Both David and I would love for me to stay home.

So now we're looking at trying to sell our house. In THIS economy. Yeah. Joy.

But we're thinking of trying anyway. Sell our house and buy a cheaper one. Robbie is worth it. That I'm sure of. But it's a matter of being able to do it.

And how do I get a house ready to sell when I spend upwards of 10 hours a day trying to feed a baby? I can barely find time to feed myself, do laundry, shower. But now I'm going to try to fit in fixing the door that my dog tore up? Get rid of all of our junk?

It's just all so overwhelming.

I look back at the past year and see what a huge journey it's been. This time last year I'd just found out I was pregnant with Robbie. I didn't even believe I'd really HAVE a baby. And here we are.

So I try to look forward. To 2010. I can only hope that things will be better by then. We just have to get there.



Newt said...

Happy New Year, Trish! I'm glad Robbie gave you a reason to celebrate. I hate that you still have so much worry and doubt and exhaustion.

I hope the New Year brings huge happy surprises, more sleep, less worry, and Robbie turns a corner with his food. I so wish I could wave a wand and make it happen. But until I develop that power (soon, hopefully!), know that I'm thinking about you all, and wishing you three the best in the world.

Jenn said...


I really hope this is a step in the right direction. You are doing everything in your power. Robbie is so lucky to have you! I'm thinking of you guys and as always, let me know if there is anything I can do to help!

Mrs. Spit said...

Oh sweetie. . .

I'm sorry. There isn't anything I can say or do, other than listen to you, and I'm always willing to do that.

Heidi said...

Please take comfort in the fact that no one could be trying any harder or doing a better job of taking care of him than you. This is probably the wrong thing to say with March approaching, but I just think you are doing an incredible job and I can't help but say it. I am so sorry. I wish there was more I could do than tell you what a great mother I think you are. Robbie is so lucky to have you.