Friday, June 15, 2012

Feeding Frenzy

If there's one time I need to read other's blogs for appreciation, it's during feeding. I should have them propped up, and as I give Avi a spoon, I should take in a good, healthy sized, dose of gratitude at the very same time!

Truth be told, we've gone rounds with her. I start off showering her with love and kisses. I'm a sweet talking little Momma at first, but my sugary words fall on deaf ears, so then my efforts turn to indifference. The numbness slowly evolves into downright nasty, as sadly that seems to be what she prefers. Then, the guilt sets in. How can I be nasty to this little girl? It's the only way she opens her mouth though. It's the only time I ever raise my voice and get mad at her.

Feedings are usually a degree of sheer torment at some point around here, and I'm sick of it. I am having feeding tube fantasies again : )

She is so damn stubborn. As I'm feeding her, I often laugh thinking about if some stranger walked into my house, and saw the exchange taking place. It would look something like this ~ wicked witch of the west mom,  and what looked like the poor, innocent, brain injured child who appeared to be just trying to do her best to eat her food. They would attempt to have me put away.

If you've fed our child for any consecutive length of days, you would know, the snapshot is just not the reality of the situation. Actually, you would probably toss the spoon, and bowl, throw your arms in the air, and go running down the street with a combination of dandelion greens, yam and daikon radish all on your hair, face and cute little outfit! If we could hire someone to come in and feed her every.single.meal of the day, we would! Dave and I are at the end of our rope.

Before Aviana was in the hospital this recent time, our doctor asked me, "do you think her feeding issues are brain injury related, or behavioral?" I spat, "BEHAVIORAL!" Yes, I pretty much screamed it at him. As the words were barely out of my mouth, her doctor completely agreed, he said, "it's behavioral, and we need to break this stallion!" But guess what, after the botched liver biopsy, the whole perfectly placed feeding plan fell by the wayside. He pitched us a Porsche, but after, pretty much washed his hands of us and sent us off in the Yugo of feeding. Why? Well, I'm still trying to untangle the mystery.

In the meantime, we duke it out with the child three times a day, oh and I must not forget, I stand on the corner and proposition anyone who will come feed our child.

Real Life Scenario


A few weeks after we almost lost Avi. We were loving on her. We were hugging her tightly, and so very thankful to have her with us. We were telling her how much we love her and how grateful we were to have her here with us. We were both crying over her, which never happens, as Dave almost never cries.

Dave was about to feed her and I was going to make a Paula Dean Lemon Loaf Cake (yeah, I actually sometimes do make other things, than pie : ) I was sweet talking Aviana and told her that if she ate well she could have some for dessert.

Dave starts feeding. I start baking.

Dave: Avi, do a good job ok. Dessert is going to be good tonight.

Dave: Come on honey, open your mouth.

Jen: Avi, you need to open your mouth sweetie. Don't you want dessert tonight. It's going to be good.

Dave: Avi, come on. You need to eat.

Jen: Avi, that's not opening your mouth. How are we supposed to feed you if you don't open?

Dave: You're about to lose your dessert.

Jen: Just stop Dave. Forget it. Put her to bed. I'm so sick of this.

Dave: Come on Avi, open your mouth.

Dave: Miki, open your mouth baby.

Dave: Fine. Forget it. You're going to bed!

Jen: Good job Avi. You lost your dessert and now your going straight to bed. All because you won't open your mouth!

As you can see, within one feeding, she can turn us on a dime. She drives us crazy. And you know who else drives us crazy, her Nana. While we so appreciate her help in coming over to feed her sometimes. What we don't appreciate is when we are feeding her, and like a parrot -  she perches over our shoulder and says things like....

She has food in her mouth.

You're going too fast.

She just doesn't like her food.

She needs more water.

She needs to swallow.

You need to slow down.

She needs a break.

She's so cute.

Awww...look at how cute she is.

She's such a good girl. (She says this when she's doing horribly)

Avi, you're such a good girl!

It's like the two of them are in cahoots. My mom says all of the above in the sweetest, cutest, little voice ever, which used to fool me. It makes it really hard to get upset, but the truth is, when you just feed her once in a while...yes, she does look cute and yes, you can make little observations of what you think it might be, and yes, you can be on her side. We feed her day in, and day out, we know how fast, if she has food in her mouth, if she has swallowed or not, if she needs a break, when she needs water, we know every nuance of this child.

I do however see my mom's point of view, Aviana is her baby and it hurts her deeply to see us get frustrated with her The bottom line though is we are her parents and we have to keep her weight up. That is such a stressful thing. Her health, weight, and well being rest entirely on our shoulders and if she's not opening her mouth, well then, we can't do any of the above. I've thought about this a great deal over the past few days, and what it boils down to is - when feeding, my mom is looking at Aviana from a purely emotional standpoint, we are observing her physically.

Oh Avi, I'm about to stick a tube back in you! I never thought I would have to threaten my child with a feeding tube. I often wonder why we worked so hard to get the thing out? We wanted so desperately to give her some sort of a quality life. We desperately wanted for her to be able to enjoy food, like so many of us do. To be able to eat, socially, like we all do. But you know what...she could take food, or leave it if you ask me. She really doesn't care. So why should we?

I talk a good story, but I'm sure I won't ever go the feeding tube route again. There were many benefits, but there were a host of drawbacks as well. Switching would essentially be trading one problem for another.

The truth of the matter is - for me, feeding has always been a struggle. I didn't remember this, but a few days ago, I had to go back to the very beginning of this blog, and there it was, in black and white, feeding problems. Boy did it jar all the old memories. I spoke of my feeding battles with Aviana prior to the accident. She's a stubborn little one. It's nice to see some things haven't changed, or is it?


  1. Forgive me if you have already tried this, but since you are no longer on the program, is it possible to change what you feed her? Is it possible she really can't palate the food?

  2. Hate to say it, but she sounds like a normal kid... I'm lucky if I get two bites out of my children before I am yelling at them to site back down and eat more dinner. Even foods that are supposed to be the foods they love, they'll turn their nose up at them the next day. Mealtime is a struggle quite a bit, BUT if my husband gets home late and eats dinner after us they will eat every last bit of his plate - THE SAME food they turned their noses up at 1/2 an hour ago!

    So I have actually done what I am about to describe here:
    1. Fix her meal on her plate, then fix your meal on your plate.
    2. Begin to try to feed her from her plate and don't get frustrated if she doesn't eat, simply put her's down and begin to eat your meal off your plate, you might even say something like "mmm this is good, I did a good job cooking"
    3. Then non-chalantly (sp?) ask "oh honey, would you like a bite of mine?", use the fork/spoon you have been using to feed yourself to feed her.

    I know your situation is unique but it might work. I've had a 3-year old with a plate of meatloaf sitting accross from me with her arms crossed, nose up not willing to touch her food. I was so tired I just gave up on trying to force her, so I just started eating my dinner, when I noticed her watching me, I asked her if she wanted a bite of mine and sure enough! She didn't eat anything on her plate but she filled her belly off my plate.

    Something else i have begun to notice with my two is we are having more and more control issues. One of the ways we are trying to combat this is by giving them more choices so they feel like they have control over something (because I pretty much make all the decisions on clothes, food, etcc...) - If there is any way to give Avi a choice in something that might help too.

    Another thought is that when Jimmy has his brain injury he lost his sense of smell, with that his sense of taste has diminished A LOT. So he doesn't enjoy food as much and depends quite a bit on texture. But I do try to spice up his food as much as possible, I over flavor his stuff compared to ours and sometimes he will get flavors. He has described it like having a cold when everything tastes bland and you could care less about eating. If you think this could be the case you might want to see if she responds to more pugnent flavors, for instance squeezing lemon (a good amount) on pastas or rice.

    Anyway, just some thoughts...

    Love and hugs always,

  3. Have you considered an appetite stimulant? I have a 15 year old son with a developmental disability who is very hard to feed because he never feels hungry. Even the few things he likes are hard to get him to eat due to his lack of interest. Early this year he was hospitalized due to failure to thrive and his weight had dropped dangerously low and tube feeding was being discussed. He was prescribed an antihistime (cyproheptadine) with a side effect of increased appetite and the change was amazing. Within two days he was asking for food for the first time in his life. It has been amazing to watch the change.

  4. My dear, poor Jen. How I have listened about the feeding problems, even on the phone while I'm talking to you. I can't imagine how difficult, frustrating, daunting, problematic, dreadful, feeding time is.

    I love you.

  5. I read this post last night and then thought about it all night, even googled it, but I've got nothing.

    Does she drink without problems? I'm thinking Pediasure or Instant Breakfast, which is what my daughter ate when she had jaw surgery.

    Wasn't Kaiser supposed to hook you up with a feeding therapist? If they can't/won't, might Regional Center do that?

    I know I said this before, but I'd make sure that her teachers fed her lunch just to give you a break.

    I feel for you because I know this would send me over the edge.