Wednesday, June 20, 2012

Goals... check!

This week I have gotten no less than five emails/messages from preemie mamas at their wits end when it comes to feeding. They are coming for advice, because they know of the road we have traveled. Jack struggled for a year before he got a g-tube (something that was the very best decision for us). Since that time, he has slowly made incredible progress. He now eats all his calories by mouth after attending feeding therapy at Seattle Children's Hospital. YAY! But it is all soft, pureed foods and he doesn't drink beyond a couple sips. 

We are still working and still have a long way to go.

I have blogged extensively about this very subject. Micro preemies are notorious for feeding difficulties. It is the rare find to hear of one who hasn't struggled at one point or another. And it just seems like this week in particular, I am hearing about it a whole lot. I see many of you crying out in frustration on Facebook. I read the pleas for help and prayer and my mind goes to those days when I wanted to simultaneously pull out my hair, lay in the fetal position, and beg God to just make my son eat.

When I give advice, I can only share our personal story with the caveat that each preemie is different. Sometimes, you can avoid a feeding tube and that is truly wonderful. But other times, you need a feeding tube. And you know what? It is equally a good thing. Let me repeat. It's a good thing. Getting nutrition into that little body (however you do it) is the most important thing you can do. No beating yourself up over something that is totally out of your control.

Feeding issues are the single most frustrating thing we have ever gone through with Jack. It is harder and more emotionally intense than the following:

-shunt worries
-RSV worries
-gross motor skill worries
-fine motor skill worries
-communication worries

Yep. It's officially the worst.

But I wanted to share with you what happened yesterday, because I think it's pretty awesome and very appropriate to what I'm talking about here. We were in feeding therapy. Jack was working on adding some shredded cheddar cheese into Cheeto crumbles to work on a different texture. Verdict? He hated it and maneuvered the shredded cheese to the sides, leaving his precious Cheetos readily available. I was just chatting with our therapist. She mentioned that it was time to reevaluate how things were going and decide to continue with our laid out goals or create new ones.

She pulled out Jack's file and started reading through the goals. Without me even noticing or remembering what Jack's goals actually were, come to find out, he met EACH AND EVERY SINGLE ONE OF THEM. Slowly, over the past 6 months, Jack has been making progress that I wasn't even seeing. Sometimes when you are in the throws of feeding worries, you can't see beyond getting the next 2 ounces in your precious little one's belly. But if I could just get you to lift your head up and try to imagine life 6 months from now... oh you would be amazed at what your sweet one is doing. 

Keep your chin up, mamas. Slow and steady wins the race.
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Sarah Pope said...

Perfect Jessi. Just perfect. :)

mouse said...

Oh my goodness I needed this today after a bad review at clinic! Thank you for sharing-today and every other day of journey. You're all amazing and Jack is such a superstar x

Emily Real said...

This is a good word. And it's true (and good) that you repeated, "It's a good thing." Whatever the little one needs, it's a good choice. Good job Mama, and good job Jack sneakily reaching those goals. Happy with you.

Jackie said...

First off, GO JACK!

Second, You're right on Jessi, right on!

Becky Price said...

Jessi, thank you I really needed this post today. Great job Jack Man!

Arianne said...

That's hilarious that Jack can still assert his independance when it comes to eating. Darn if these little guys weren't little robots we could program! :)