Sunday, February 8, 2009

Denial

I was able to live in my own happy place for the first year or so, feeding Mallorie breastmilk (almost exclusively through her tube), and singing, La-la-la-la-la when a doctor would ask about constipation or mention the nasty words, neurogenic and bowel in close proximity. I even remember that lovely Dr. O (the spina bifida doc) tellling me that "sometimes later" kids with SB will develop problems with constipation when they start on solids. Yeah, yeah, yeah. Not hearing you with my fingers in my ears over here.

Mallorie and I have had a great life in my world, where I got to feel all Mother Earth about raising her, and laugh behind the backs of nay-sayers with their grim predictions. We managed to live there more than a year, with only a couple of excursions out, when I tried, with far too much enthusiasm, to feed her whatever to me felt like healthy and natural foods. Like the day I stuffed something like 1/2 cup of steel cut oats and gobs of applesauce into her tube, all at once. I was dragged back into the real world when I tried stuff like that. (And into Dr. B's world!)

In my world, there is no constipation. So there are no medications to treat it. In my world there is no neurogenic bowel. There aren't any commercial tube-feeding formulas, either. I'd prefer there were no disposible diapers, but half the time, in my world, there are. The other half, there are cute, colorful little fitted diapers that are so stylin' and Earth-friendly, frugal, and easy on the bottom.

But breastmilk, though about the most amazing substance in the world, isn't a great iron source after about 6 months, and real people eat a variety of foods. So we work on this goal of rounding out the diet, and somewhere along the line, I get enthusiastic, and forget about balance. And when I do, I don't want to hear about Lactulose, or worse. I want to figure it out on my own, some natural method of fixing the problem. I remember Dr. B asking me once, after I got Mallorie really stopped up, "Why didn't you ask me? That's what I'm here for."

I don't know. Some part of me thinks I know best, or can figure it out on my own, if just given the chance. Without laxatives, or anything that didn't grow naturally somewhere on Earth. There are things I haven't yet fully explored. The "magic" amount of Udo's Oil to keep things going, or a great high-fiber fruit that can be given fresh and won't make her scream like the blueberries did (both times). I even just read McMama's post mentioning the protein content of peanut butter, and that nut butters can be great sources of good oils. And how about that ground flax seed and the bottle of fish oil she has pictured there? There's so much else out there to experiment putting into the ol' tube. But this time, the vicious cycle of not pooping, things (like oatmeal, again) backing up, and not being able to take in feedings ... so there's vomiting, dehydration, electrolyte disturbances ... really got out of hand.

This time I might have learned a really big lesson. I'm walking away with one word. Lactulose. It's a sugar alcohol; that seems "almost" natural, right?

And maybe another word that will make one Dr. B very pleased, if not a little bit smug. Surrender.

2 comments:

Laurie in Ca. said...

Ah, my sweet friend, we all learn the hard way sometimes. In your world, you and Mallorie function just fine and when there is a goof, your tough little chick hangs in there until the problem is found. She is teaching you and she loves her mommy. I know that I trust Dr. B. with Mallories sweet life. Surrender is a hard thing to do but a good thing too. I love you Connie and Mallorie too.

Love and Hugs, Laurie

Roslyn Dahl said...

Hi Connie,

I found your blog and wondered if you had heard of the Oley Foundation yet.

We offer free information and peer support for families like your with a member on home tube or IV feeding. Check out our website at www.oley.org.

In particular you might be interested in the

• Tube Feeding Tips page
http://www.oley.org/tubetalks.html
Scroll down to find the section on homemade formula.

• Meet Patients Section (try all three links)
http://www.oley.org/volunteers.html
http://www.oley.org/call.html
http://www.oley.org/forum.htm

• Oley's annual conference -- where you can learn a lot about tube and IV feeding and meet other families facing similar challenges. Preliminary details are posted now, but keep checking for updates at http://www.oley.org/2009_Annual_Conference.html
There are travel scholarships for first time attendees.

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY