I'm sorry, Alicia.

When someone came by to see Mallorie today, I proudly held Mallorie on my lap, demonstrating the new squirt bottles we have been using for Mal's tube feedings. Matthew had just quickly blended up a nice blend containing baby food chicken, pureed beets, peaches, and milk. As the bottle warmed on the table nearby, I excitedly told her about how we've been so successful at getting solids into Mallorie without causing constipation, and how nice that is. How over-pooping is so much better than constipation. And then I started showing her how it's done.

In the sentence, "Matthew had just quickly blended up a nice new blend, ..... pureed beets, ....." the words quickly and beets might be the key words.

Because about 2/3 into the feeding, I hit a point where I couldn't squeeze the food out anymore. So I squeezed harder. And it splattered all over Mallorie, me, the table, carpet, my calendar. It took me a few minutes to realize that it was also all over Alicia. And the paperwork she had brought with her.

Red-faced, I turned to Alicia and said, "At least it was you. And not someone else."

Whatever that stupid sentence meant! So now I'm sure she left here wondering why I might have thought it was better to spray her clothes with staining beets and pureed meat than someone else.

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.

Not Me Monday! January 19, 2009

My favorite way of letting my OCD worries fly away. Confessing what I did not do in the past week, in McMama style. So I can be free from replaying those things in my mind, and move on to bigger and better (present) things.

This past week, after it began to look like Mallorie might have developed an allergy to latex, I did NOT spend several minutes wondering how we might still be able to let her keep (and wear) her cool Old Navy socks with the rubber nonslip tread. I would never have done that simply because those were my favorite of her socks. Especially not after the suspect reactions she had were affecting her FEET! And one foot seemed to be affected because of one of these socks!
I am not still mourning the loss of Mallorie's ability to wear cool Old Navy and Baby Gap nonslip tread socks. With the tread made of rubber. "Nonslip" for a baby who cannot walk, so the only slipping or skidding she's going to do is if we manage to somehow let her fall off the couch again!!!

But I have so many of these cute socks, and in so many sizes. :(

When I heard one of Mallorie's hospital nurses telling me this cool story about how someone invented a technique for changing a colostomy dressing, I did NOT spend the next 10 minutes trying to figure out how to adapt that technique (involving use of a tampon) for containing Mallorie's profuse watery diarrhea.

I also did not almost stop her bowels up. Twice. By mixing baby barley cereal with food and putting it down her tube, because I'd read that oatmeal and barley were grains highest in soluble fiber, and hoped it would thicken the poop. Oh, but it did thicken the poop, ... to the texture of rubber bouncy balls that shot out like cannonballs with a "wash" of watery diarrhea behind them. So once she had strained and cried throughout much of one day when I'd given the barley cereal, ... I certainly didn't try the same cereal AGAIN, on another day!!

And I did not hold onto a bowl of oatmeal that came on the breakfast tray one morning in the hospital, but hid it, because I didn't want Dr. B to see it. Because oatmeal is the other high-in-soluble-fiber grain that we already KNOW has stopped Mallorie up in the past. Scary stopped up, so I woke up in a cold sweat in the nighttime, after one day when I had given her 1/2 cup of steel cut oats. I was sure she was going to need emergency surgery for a bowel obstruction. But this time, if I HAD done this hiding of the bowl of oatmeal, it would have been because she was still having profuse watery diarrhea, and would have needed the stoppage. You know?

Plus, it's so cool to be able to put real foods in that danged tube! But, I didn't do it, right? Good thing.

And I didn't make a post about chairs yesterday, instead of about what happened the previous weekend that got us into the hospital again with Mallorie, 3rd time in 2 months. Because I'm not one for procrastinating or using any other form of avoidance of painful things. I just plow straight on in, and face things, so I can move past them. But, if I DID do such a thing, you might have to be patient with me. I'm just not ready yet.

And I didn't spend all day researching my favorite bulb syringe (AKA nasal aspirator, AKA ear and nose ulcer syringe, whatever that means), to see if it is latex-free. ALL day. And most I could figure out was that it might be made of PVC. Whatever that is. Which might be latex-free.

And I must not have then realized that the one I have (and love, because it's such a great color, and better fit for older nostrils than the U.G.L.Y. red ones you get to bring home from most L&D experiences) has to be at least 14 years old. Because I think it came home from the hospital with Hannah. So even IF they are latex-free PVC now, they might have been latex rubber 14 years ago. :(

Late Update

Sorry, we've just been so busy, and haven't updated. Mallorie has been recovering really well from her RSV adventure. Except that she still "oinks" (her dad's term) every few days for a little while, you'd almost not know she was sick. The oinking is the funny noise she makes when her nasal passages get swollen and she still insists on breathing through them instead of her mouth.

She also has been taking a solid feeding in her tube once a day, meaning a mixture of Gerber turkey-rice-veggies, fruit, baby cereal, some Udo's oil, and milk. Oh, and egg yolk, which apparently doesn't cause the violent retching/vomiting that whole egg did in the past. Matthew has been mixing up her mixtures every day, and spends time creating plans and calculating calories she'll be getting each day, using this book.

I also recently found a support group (a yahoo group) where I've learned so much mostly by quietly reading the emails among members, and even been able to connect with a couple parents who have given me encouragement and advice. One of the things that I found most comforting was reading emails where other parents talked about how hard it is to just make the change, to start adding solids to their children's diets. It was wonderful just to know I wasn't alone in having trouble with the transition. Some days, anything extra - like making a change in routine - just feels like too much.

And I also learned from this group that the Mic-Key button instruction pamphlet actually mentions giving blenderized foods through the button! (I checked to make sure, and sure enough, it was there.) So much for the warnings we were given to never, ever put real foods through the tube. I'm pretty sure I read something about blenderized food in the Mini-One paperwork, too. The professionals will catch up with what families are apparently already doing, some day. (I still chuckle when I put Mic-Key and Mini-One in the same paragraph.)

Mallorie's speech therapist, has also been working overtime, helping us create/adapt toys that encourage Mal to use her arms and get her reaching and involved in active play, as opposed to just passively watching things go on around her. I want to get Becca's permission before showing pictures of the latest thing she made (which is another way of stalling, because I need to get to bed, not try to figure out how to download pictures from the camera, tonight).

Oh, and I have to post soon about the neat chair a mom I know told me about. Later.

Not Me Monday! ~ (Calling all moms and dads: feeding advice needed.)

OK, we're officially in over our heads.

Mallorie's lost about 1.5 lbs ... probably in just the past month. I was going to write this out honestly, but just realized I'm going back and changing the title (done) so I don't have to own up to all this. :)

I can admit this: When Mallorie was getting ready for surgery in September, I decided, single-handedly, to put her back on an all-milk diet. Breastmilk, not cows milk ... in case you want to go all medical on me. I felt it was a great plan for avoiding the problems (gagging/reflux/vomiting) we run into when we mess too much with her diet, because the one thing we know she does NOT struggle digesting is breastmilk. And it was also a way to make sure she was getting the great immune-boosting benefits of human milk.

This was not the problem. This plan did great; she kept her wt up (and I think gained a tiny bit), wasn't having digestive problems, and did great recovering from surgery. She even continued to do great when I sort of "forgot" about The Plan, and continued her only on breastmilk, because, heck. She was doing so well! She was healthy, energetic, and her health was fine. And since shortly after my supply dipped after her February hospitalization, I discovered the generous gift of milk from other mommies who allowed us to have some of their excess (Despina, Lyanna, Michelle, Tamara), I wasn't really stressed about The Plan or the timing of it all.

Here I'll start "confessing."



While I was busy forgetting about The Plan, I did not realize that she was really only refluxing at night, so I didn't decide to just eliminate a nighttime feeding so she could go a longer stretch at night between feedings ... but forget that she needed to make up those calories elsewhere.

I surely didn't focus so hard on replacing total fluid volume to prevent constipation(so I gave extra water and Pedialyte pre-feeds), that I forgot everything I ever was taught about nutrition.

I didn't fail to even think about calories until the Early Childhood dietician came by with his portable lie detector scales.

I didn't sort of shrug when I realized my error, and think, hey, she's still healthy, and sort of slowly edge back on The Plan, until a couple visits to Dr. B required something of an admission ... like, OK. I think the only reason she lost weight is that she's been getting fewer calories. (To which Dr. B replied, Ya think???)

It certainly didn't take me that long (like only a week between first polygraph weight check and the one where Dr. B pulled the acknowledgement out of me) to realize that just maybe I needed to add back the missing feeding, and then figure out adding solids to her feedings.

Because I'm totally not that dense.

End of confession. Now for the request. There are 6 yrs between Mallorie and her brother who came before her, and I just don't remember these things. Heck. I was the whatever-it-will-all-work-out mom when it came to fitting in the solids, and I just don't think it was this hard to figure out. What are we doing wrong? Do other babies spit up sometimes when they are transitioning to solids? I remember being told to try small amounts of solids, and only one new food at a time, but was it really that hard getting to a fairly high percentage of solids per meal? I honestly don't remember. I do know I was the mom who (on principle, and I'll admit that) waited till seven months old before starting any solids .. because I was told to start at four months (by an antibreastfeeding doc), then surely/absolutely by 6 months ... :) But I simply don't remember all this gag/vomit/reflux, even with her refluxy brother.

So you parents of non-tubefed babies, did you have any struggles with the transition, and if so, what helped? Because what she is struggling with is getting to a normal (solid) foods diet. At least we know tubefeeding formula issues aren't part of the problem.

And you parents of children with tubes. Is this something typical of just having a tube? I'm having trouble seeing it that way, because with her, the bad problems came first after a long hospitalization, and then with the addition of certain foods. And they seem to go away when we identify and eliminate certain triggers (like we know she can't do milk or eggs right now).

But obviously, I'm in the dark here, and not sure about much of anything at all.