Wednesday, April 24, 2013

Work In Progress

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We have a dream. One that we often talk about among our little family. We are foodies. It's one of the things we love. Chef Husband who cooks, I who bake. We not only love food, but we love to travel and eat. It's us. It's what we do.

Our dream is that we would be able to go out to eat as a family, each of us enjoying a delicious meal. All together at a table. Eating and drinking. Together.

Seems simple enough, right?

But for our little one, with a complex medical history, this is not so easy.

For Jack, the ability to eat, the coordination, the oral aversion, the struggle, it has always been a dream. And it's been one of the hardest preemie issues we've had to deal with. As much as we want Jack to love food, he doesn't... yet.

If you've been a reader of Life with Jack, you know I have written so much about feeding issues. About the unimaginable stress. About watching your baby starve. About Failure to Thrive. About Jack getting a g-tube at a year old. About his tube wean at age 2. About our struggle with finding a feeding therapist who "gets it". About our boy who doesn't yet chew or drink enough.

It's still a work in progress.

The thing I've learned the past year is that each journey to eating, each preemie, is different. I know this really should go without saying, but my rule is that I just can't give feeding advice. Feeding is the most complex thing. Some have issues with texture. Some have issues with purees. Some have coordination/motor issues. For some, it is purely behavioral. Some have digestive issues. Some a combination of all of these issues. Because of the incredible ambiguity, I stay out of advice giving. I can only share Jack's story with the caveat that what works for him, may or may not work for you.

There is not an issue I get more questions about. I get desperate emails and I truly understand the desperation. Eating is such a natural, instinctive thing with typically developing babies. What gives so much pleasure, gives our little ones pain. It's cruel and it breaks my heart.

But our dream is not dying.

We are working at it. Jack still eats only purees. Only soft food. We feed him and he licks the food off a spoon. He timidly takes little licks of crunchy puffs. He does the Cheetos self fed! His first reaction is not to gag when he gets crumbs in his mouth. This is a big improvement. Jack also takes sips of water throughout the day. But definitely not enough to remove his feeding tube. The tube is still used for hydration. We give him water through the tube after every meal. Jack also eats best while being distracted. For him, this normally means eating while watching a movie.

What I've learned about feeding issues is that you can oftentimes spend years working on it. And I know that is hard to hear. It is very slow going. One of the slowest therapy areas for us. It's a lesson in learning to trust something (eating) that feels unnatural or unpleasant. And we don't rush it along. It's all in Jack's timing.

I know that someday, our dream will come true. Jack will become a foodie. He will love food just like his mom and dad. Until then, we keep at it. However slow the process.

It's worth it.

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emily said...

Thank you for sharing this.

I have a one year one son, named Jack, who was diagnosed as failure to thrive. He has (minor) issues with feeding, so it's almost comforting to know that I'm not alone.

I'll definitely be praying for you guys. I know (at least with our minor struggles) it's challenging.

Your Jack sure is cute!

Anonymous said...

Ugh. Feeding my daughter is the hardest thing I've ever done. Truly nothing in my life compares to the stress, anxiety and exhaustion that comes with a tube dependent child. I have a 15 month old that is 100% tube fed with no end in sight. It often feels like all I do is feed her. Thank you for writing about this. I hope that you get your little foodie soon:)

Anonymous said...

We just got the OK to try our son who has been tube fed for 5yrs (29 weeker with NIC). He is soo hard to feed, finicky, gags at times and sensitive gut too. I completely hear you and feel you - it's a fundamental thing as a mom to feed your child. When your child won't eat, it almost feels like I am a failure.

:-( :-)

Jessi said...

Thanks for the comments! It's always good to hear from you and to know we are not alone on this journey!