Tuesday, July 13, 2010

Who knew eating was so hard?

Welcome to the July Carnival of Natural Parenting: Let's Talk About Food

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have written about their struggles and successes with healthy eating. Please read to the end to find a list of links to the other carnival participants.

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When I got pregnant, we had these grand plans. Cloth diapers. Baby wearing. Exclusive breast feeding. Baby led weaning - none of those store-bought processed containers of questionable food, we were going to  make our own.

Not that we're perfect at eating well. Oh, sure, we talk a good talk. And we have made improvements - drastic improvements - over the fast food and boxed food world we grew up in. We've had a CSA membership in the past. We mostly eat pasture fed beef and free range chicken. We now have a service that delivers fresh fruits and veggies every week, and though they're not organic, they're local when it's in season. We've cut HFCS, and most pre-processed stuff, we eat out once or twice a week instead of eating in once or twice, and it's rarely fast food. We're actively choosing healthier options most days, which is not something I could have said even 3 years ago.

But all the ideas of what we were going to do with our child flew out the window when Acorn was born prematurely. Pumping is not the same as breastfeeding, and by the time he was 3 months old we were supplementing with formula - I gave up pumping at 7 months in favor of uninterrupted sleep. Cloth diapering might work in the postpartum unit for that first overnight stay...but not when your child's urine output is being monitored to adjust diuretics.

And child led weaning? I guess that's what you'd call this mess we're in, other than the fact that we have a child who doesn't eat enough to sustain his own weight, due to oral dysphagia and oral defensiveness.

When we brought him home from the hospital at 9 1/2 months, he ate about 10-12 ounces of formula a day....and the remaining 20+ went into his feeding tube. When we started trying to get him to eat solids, it was on his terms, or nothing, and involved him vomiting more often than not - I was thrilled when we got him to eat 2 Cheerios in a row without gagging and puking all over the table.

These days, at two years old, he drinks 3-5 bottles of millk a day, some of them with cereal or with Carnation Instant Breakfast added. He eats some finger foods - pepperoni, Cheetos, anything "cheese flavored." He eats yogurt (hey, at least I can buy that organic, if I know where to shop). 


We still have one overnight feeding through his feeding tube. At least there, I threw out the pre-packaged stuff (it made him vomit) and we're mixing smoothies. Fruits and veggies and almond butter, good oils and protein powder and milk - all the good stuff he's not getting during the day. And even that is sometimes made with store bought "name brand" non-organic baby food purees, because there are only so many hours in the day, and sometimes cooking isn't on the priority list (though we do try to prep ahead several weeks worth of veggies at a time).

He started feeding therapy this month, and they've already given him lollipops and beef jerky and Pixi Stix. And while I cringe at all the junk food...I'm glad that he eats at all. I'm glad that we see progress every week on what he will try and what he will devour (well, ok, we're talking half a jar of baby food, or about 2 ounces in a sitting on a good day).

One of these days, when he's older, we'll talk about making good choices...and one of the choices we'll talk about is this choice we've made: Eating is important - whether it's by mouth or by feeding tube. Choosing what to eat is a privilege that not everyone has. I'm hopeful that Acorn will eventually have that ability.


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Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Code Name: Mama and Hobo Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:
(This list will be updated July 13 with all the carnival links.)

15 comments:

  1. What a hard journey. You are so right - Eat Food is the most important rule. Congratulations on being able to let go rather than focusing on the negatives, a postive attitude is far more important than organic vegetables!

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  2. Many, many hugs to you mama. 9 1/2 months in the NICU? I can understand your joy in any eating success. Keep on keepin' on - eventually you will get there!

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  3. You do want you can. Take the wins when the come and don't beat yourself up about things that don't go according to plan. I never thought a snowcone would count as breakfast. It's mostly ice. Mostly.

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  4. Oh, wow! You've really put things into perspective. Food - no matter where it comes from - is what is important. The same is true with love, and I have a feeling Acorn is well-loved even if your best-laid plans didn't unfold the way you'd hoped. (I don't have a special needs child, but mine didn't either.) :-)

    Blessings to you and your family. You've been through a lot and are a courageous model for us all. We're not in control as much as we'd like to think, are we?

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  5. Hey there! I just came across your blog from a link on LittleStomaks for the Natural Parenting Carnival. I feel absolutely the same way as you. I had all of these grand notions about natural parenting that kind of flew out the window when my son was born, starting with the emergency c-section and his stay in the NICU. It's something I still struggle with.

    My 3 year old son also uses a feeding tube at night (NG tube) to get additional calories. He has trouble eating enough because he's got gastroparesis. We've been using the tube for about 2 months now. We just switched from one formula to another because we noticed a drastic change in behavior (he became hyperactive, fidgety, couldn't finish sentences, tantrums, etc). We switched to a more "natural" formula with pureed chicken, veggies, fruit, but the 3rd ingredient is still corn syrup. The additional calories are helping my guy gain weight, but his behavior (he was already a "spirited" child) is getting more and more unmanageable. I KNOW it's the formula, but we're not sure how to reconcile this with his need for additional calories. I am BEYOND intrigued by the smoothies you are mixing for your son's feeding tube. I was getting ready to email our feeding team about changing formulas once again, and I'd love love love to hear more about how you do this if you've got a spare second (ha!). It seems the main concern would be getting it to a consistency thin enough to be pumped through that tiny little NG tube.

    Thank you so much for sharing your story, and best of luck to you and your family!!

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  6. Many hugs to you! As a fellow preemie/NICU mom I get that the journey with a preemie is certainly not the way one would want to plan things. I admire you for allowing yourself to go with the flow!

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  7. I dropped Cara an email, but anyone else interested in real food for a feeding tube kid should check out http://ainsleyrae.blogspot.com/p/blenderized-diet.html - Ainsley's mom has it all figured out!

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  8. Thank you so much for sharing this! You're so right that we can get hung up on the details when a situation comes up that makes you focus back on the basics: eating and thriving. I hope your little guy continues to make strides in learning to eat, and I trust you'll be wonderful at teaching him more about food choices as the opportunities finally come up. You'll be so excited then! :)

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  9. What an incredible journey you've been on, thanks for sharing!

    Isn't it so true, all the hopes and dreams that we have before the realities of being a parent set in. Some things stick around, those that are super-uber-important. Some get changed as we realize reality is different than fantasy. Some get changed because our kid doesn't jive with our plans.

    Bravo to you for being flexible, for following your babe and for doing right by him. Even if it isn't exactly as you had planned. Way to roll with the punches!

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  10. What a courageous and loving momma you are! I had an infant in the NICU for 4 months who didn't come home. I also have 8 other healthy children. I know that God is always in charge, and we do what works for our child. Thank you for such an honest post.

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  11. I hear you on the "eat food" front. We were going to do things the same way in terms of food--everything organic, everything homemade. Now we'll just settle for "eat enough food to grow." When possible, I make good choices for Hallie (no HFCS in her whole wheat bread; local fresh goat milk) but let's face it--the kid will eat no fruits, really, and no veggies at all. Her sole source of 'meat' are hot dogs and the occasional fish stick (under duress). She lives on pizza, fries, and chocolate. And none of that is in a quantity one needs to grow either. So I pick my battles and all natural, slow, organic food has gone by the wayside of just hoping she'll eat something.

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  12. I hear you on the "eat food" front. We were going to do things the same way in terms of food--everything organic, everything homemade. Now we'll just settle for "eat enough food to grow." When possible, I make good choices for Hallie (no HFCS in her whole wheat bread; local fresh goat milk) but let's face it--the kid will eat no fruits, really, and no veggies at all. Her sole source of 'meat' are hot dogs and the occasional fish stick (under duress). She lives on pizza, fries, and chocolate. And none of that is in a quantity one needs to grow either. So I pick my battles and all natural, slow, organic food has gone by the wayside of just hoping she'll eat something.

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  13. What a courageous and loving momma you are! I had an infant in the NICU for 4 months who didn't come home. I also have 8 other healthy children. I know that God is always in charge, and we do what works for our child. Thank you for such an honest post.

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  14. Many hugs to you! As a fellow preemie/NICU mom I get that the journey with a preemie is certainly not the way one would want to plan things. I admire you for allowing yourself to go with the flow!

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  15. I too am a Mom of a child with feeding difficulties and allergies. We are finally seeing the light at the end of the tunnel as he is starting to embrace eating after 4+ years of trying. There are times of tears and hardly no one understands how excited you can be for a child to eat even a french fry or chicken nugget. I wanted to share a resource with you that I've found most helpful. New Visions 1-800-606-7112 They have training for families and resources you can order as a parent. I took the training and it really helped with my confidence level and in making good choices for our lifestyle. Most of all, trust your instincts and don't give up on healthy options too! The therapists had us using all kinds of junk food just to get him to experience different textures but I never truly felt good about it. He rejected those foods too and I didn't want to spend hours of my day trying to get him to eat junk. I had enough trouble getting the good stuff down. Now we still include some of those but I have been phasing them out slowly. Personally, we come from different ends of the religious spectrum. I am a Christian, believing in God the Father, Jesus Christ as our Savior and the Holy Spirit to guide our lives. I will keep you in my prayers- for peace, strength and guidance in your life's journey. I don't know if I could have made it through without my faith. There were times that my little one and I would just sit at the table and cry and pray. I truly am wishing you the best for you and yours.

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