Meet fearless Frankie and her parents

Update: In March of 2010, her parents announced that Frankie discovered the joy of eating and left tube-feeding behind for good!

I’d like to introduce you to Francesca and her devoted parents.  Their extremely touching and wonderfully written blog, Frankly Frankie, documents Francesca’s struggles with eating. They need our morale support–right now.

Adorable two-year-old Francesca, or Frankie, has a story that begins very similarly to Stella’s: severe reflux (GERD) and cow’s milk protein intolerance, signaled by bloody diapers, led her to refuse to eat as a newborn. Frankie’s mom, Brett, eliminated dairy from her diet to no avail (sounds familiar). As with Stella, a reluctant switch to amino-acid-based formula and bottle feeding was made. But Frankie was unfamiliar with the bottle, the very expensive formula caused terrible constipation (not to mention its horrible taste), and she soon shut down orally, with near-total refusal to eat. Diagnosed with Failure To Thrive (FTT), she descended through the ranks of the growth chart until she fell off, despite valiant daily efforts to feed her “normally.” A g-tube (PEG) was surgically inserted into Francesca’s stomach in order to prevent severe malnutrition. Francesca remained off the growth charts until very recently, a truly hard-earned achievement for her parents, a milestone that prompted celebration.

She is now two years old and has been 100% tube-fed. (For the full story, click here.) But not for long. Frankie’s parents very recently embarked on an intensive and heroic weaning effort. What touches me so much about their story and current efforts isn’t, as you might expect, that Stella could easily have wound up in the same exact situation. What gets me is the absolute dedication and above-and-beyond efforts of Frankie’s parents. They are doing everything humanly possible to help Frankie discover the joy of eating. They have turned their home into a play picnic, a highly successful and messy therapeutic Graz method used during weaning that allows tube-fed kids to explore and play with food without pressure, on their own terms, and become comfortable enough with food to eat. The floors and walls in Frankie’s home are sticky.

A few days into the weaning process, Frankie’s parents are trying hard to keep the faith, as Francesca still prefers ice cubes over the many treats offered, including (hold on to your hats):

“oatmeal with soy milk and brown sugar, dried cranberries, pita chips, cherrios, sharp cheddar cheese, bread with seeds, coconut rice, apple sauce, carrots shaped like coins, vegetable and goat cheese frittata, whole wheat spaghetti noodles, steamed broccoli, carrots shaped like flowers, potato chips, medium cheddar cheese, slices of banana, cinnamon rolls, acorn squash, swiss chard, butternut squash, sour cream, rice krispies, puffs, bacon, scrambled eggs with cheese in a tortilla, spinach, red bell pepper slices, coconut flakes, frosted animal cookies, miniature strawberry yogurt covered pretzels, dried mango-pineapple, dried banana, egg noodles with green onion, salt and pepper, salad greens, baked potato chips, polish sausage, red cabbage, mini marshmallows, dried apples, chocolate yogurt covered pretzels, dried apricots, corn chips, dried cherries, croissant, peaches, banana bread, colby jack cheese, graham cracker cookies shaped like bugs, french bread, fresh mango, cookie bars, pear slices, candy corn, gummy bears, lettuce, chocolate frosting, gingerbread cookies, white frosting, salt and pepper potato chips, chocolate, quinoa, garlic bread, french toast, popcorn with butter, pink pixie popcorn, yogurt, celery with cream cheese and raisins, wheat thin crackers, apple slices, turkey soup with dumplings, uncooked pasta wheels, yellow raisins, brown raisins, fruit loop cereal, orange cinnamon rolls, parmesan cheese, tortillas, dried mango, tortilla chips, grated cheese, beef chili, pancakes with butter and maple syrup, chocolate cookies shaped like bears, jelly beans, deviled eggs, toast with raspberry jam, carrots with ranch dressing…”

Francesca is undergoing huge psychological and biological changes, and needs time to adjust. As such, with this type of weaning, there is a lot of anxious waiting and hoping, and often, a good measure of sheer desperation. (Hek, I threw bottles.) The outcome rests squarely in the hands of the child. As a parent, you feel helpless. Your role? To make food available (really, without even “offering” it), to remain calm, and have faith in a child who has rarely if ever shown any interest in eating.

Tube weaning is extremely stressful, even when it is going well. It’s an incredible leap of faith, and a very lonely journey. Please take a moment to visit the blog, Frankly Frankie, and send your warm, supportive wishes in comment form.

I’ll sign off by simply stating that I have absolute faith in Frankie, and her parents.

Cow’s milk and other assorted beverages

"Where the HELL is my brie???"

"Where the HELL is my brie???"

I have somehow neglected to mention that Stella is now enjoying dairy. Holy cow! Yep, it appears that Stella has outgrown her cow’s milk protein intolerance. Or, who knows, maybe she never had it and something else in my milk was bothering her–like toxic waste. Toxic waste from my boobs. We may never know. I’m just thrilled that she can enjoy cheese!

We successfully weaned Stella off of Elecare and onto Nestle Good Start with Natural Cultures (it’s stage 2, for nine- to 24-month-olds, which just means it has more calcium, phosphorus and iron). This is a standard though supposedly gentle cow’s milk based formula, and probiotics are included so we no longer have to add them to each bottle. We now get twice as much formula for half as much money. No exaggeration whatsoever. Hello savings account, we’ve missed you! After a while on this stuff, we’ll try cow’s milk, a cost-effective transition that will allow us to retire in style at the age of 50.

That said, we need to figure out next steps re: Stella and beverages. She is currently (still) enjoying three bottles a day and takes only a couple of ounces of water at best from a sippy cup in-between. She uses these easy-to-grip shorties or, less often, these taller straw cups–both are The First Years’ “Take and Toss” and cost just $3.49 for several (and no, they don’t know I exist and have not paid me to mention them to you and my other reader). My theory is that it’s just too boring. She prefers to sip from our fancy un-capped glasses, especially if we are drinking fizzy water or citrus or other adventurous (by one-year-old standards) juices.  (Put it in a sippy cup and it’s suddenly repulsive–I tried!) Actually, she prefers to dunk her hand into our glasses, until her arm is submerged up to her elbow, then bring her hand back up to the surface and splash around as if enjoying a flavored, appendage-only bath. She’s been using a straw for a couple months now. I’m always amazed at how, after sipping icy-cold something-or-other from the straw with a very concerned and pained expression, she stops, recovers, then quickly gestures (points) for more. I can’t help but blame it on Cody and his genetic predisposition toward compulsive enjoyment of  “new and exciting” beverages–anything that just landed on the shelves, anything with “Extreme” in the name, any ridiculous and frightening combination of flavors. He sees these products as dares, and he’s always IN. See? Stella views our beverages the same way.

Last night, during our weekly trip to PCC, Cody bought a single can of Hell or High Watermelon Wheat Beer. While clearly named by a copywriter after me own heart, Cody’s ruthless palette immediately declared, “not watermelon-ny enough,” and moved on. Whenever he uses our car (we are one-car martyrs), a can of some never-before-seen concoction typically involving mango is left behind. Labels fall into two categories: 1) starburst-covered design tragedies sporting titles like Extreme Lemon Ginger Caffeine Explosion (100% Unnatural!) and Lavender Pomegranate Infused Ginger Ale with a Kick of Narcotic Wasabi and 2) ultra-minimalist, too-chic designs touting gems like Dry Cucumber or Simply Kumquat.

This shared tendency will certainly complicate trips to the grocery store with Stella, and soon. While other kids demand candy, Stella will likely throw a fit over some imported sparkling juice with floral essence. For now, we linger in the chill air of the dairy case.

Goodnight, milk.

Stella wasn't sad to see the milk go. In fact, she was delighted.

Stella wasn't sad to see the milk go. In fact, she was delighted.

A couple of weeks ago, I threw out 341 ounces of frozen breastmilk. That was just the bottom shelf. I still need to clear out the top one.

It has been six months since the last of it was pumped, rendering my precious milk expired. At the beginning, every half ounce was sacred. Toward the end of my pumping days, I didn’t bother saving the milk. It sat out for hours, until I forced myself to pump again at which point I would dump the previous yield down the drain. I was so bitter. So exhausted. I’d had it with pumping. Stella had been diagnosed with cow’s milk protein intolerance and fed hypoallergenic formula through a tube for a good month, and still I pumped. The odds of returning to breastfeeding seemed grim at best. Still, it was hard to stop. I didn’t want to give up. I wanted her to have “the best.”

I’d been meaning to throw the milk out for some time now, but couldn’t let it go.

When I stopped breastfeeding, when Stella had her NG tube, I was an emotional wreck. But I was consumed with tube- and bottle-feeding my baby and completely focused on getting Stella over her feeding aversion. I never really allowed myself to think very deeply about the loss. So I never got to grieve my milk or my vision of breastfeeding and what it represented to me. I never really embraced the choice that I made–the only choice that seemed logical, the one that enabled Stella (and me) to thrive. I want to accept it completely and I’m not sure why it’s been so hard to do.

I’ve thought about this a lot lately, since dumping those 341 ounces. And perhaps the answer is simple. Formula-feeding is not what I wanted for Stella. I failed. Or that’s what it feels like. And a very small, insecure part of me wonders if there is simply something wrong with me. My milk made Stella sick. It didn’t protect or nourish her or do anything it was supposed to. I used to joke to myself, in the weeks just after Stella was born, that my breasts were being both destroyed and redeemed by breastfeeding. They were being stretched to the limit with the influx of milk, so I knew I could say goodbye to any perkiness. On the other hand, they’ve always been small and had really only been a source of ridicule from about fifth grade on, so I found it quite astounding that they had the amazing power to nourish my baby. To help her grow! For me, it was empowering. Unfortunately, that didn’t last.

I wrote about our attempt to give her a dairy-based formula. I never followed up on how it went. Let’s just say that the switch was not successful. Her intake started to drop slightly and she developed a couple of red splotches on her face.  We were very quick to switch back to hypoallergenic Elecare,  so we can’t be 100% sure if the milk protein was really bothering her or not. But my gut tells me something was off. It helps a little bit with the recurring thought that maybe, if I’d kept avoiding dairy and soy for just a little while longer, and kept trying to feed her, she’d have come around to enjoy nursing, and get the benefits of breastmilk without all the pain she’d been experiencing. Of course, that’s simplistic thinking, and dismissive of the severity of the issues we faced at that time. But the idea lingers.

So. yes. I’ve been reluctant to throw out my milk. I kept hoping that maybe someday, I could give her some.  My brain kept whispering, annoyingly, “You know, you could add a bit to each of her bottles and she’ll get the benefits!” But it’s clear now that, no, she will never have my milk again.

Every time I read about yet another benefit of breastmilk, I cringe. Each time I read some judgmental comment or article by some zealot who equates formula with poison, I seethe. (For that reason, I can no longer read Mothering magazine.)

Perhaps that’s why I painstakingly calculated the total number of ounces. I needed some proof, some evidence of how hard I tried. I will get the final number soon, when I gather the courage to toss the rest. Maybe then I can finally let go.

A drum roll seems inadequate

Today, we took a big step. It could save us a few hundred bucks a month while providing Stella with a better form of nourishment. OR IT COULD RUIN EVERYTHING.

You see, Stella’s formula is no longer covered by insurance. The really insane part of all this? Regence covered the formula when it was fed to her through a tube. But now that we’ve busted our asses to wean her off the tube, saving the insurance company costs encompassing her pump, tubes, tape and peripherals, they will not pay for her formula. It makes no sense whatsoever. NONE. We even had her doctor write an appeal, explaining why the formula was medically necessary. Doesn’t matter. Formula is completely excluded under the asinine rules of our insurance plan.

Stella’s elemental (hypoallergenic) formula costs about $40 for a 14-ounce can, roughly twice as much as typical formula (probably a little more). We can’t afford this right now. Especially since I was laid off. (I’d been expecting to go back to work part-time, but no dice. Did I mention I was available for freelance writing work?) That said, OF COURSE, we will continue to buy this formula and make whatever sacrifices necessary if we discover that her pricey fake milk is indeed crucial to her well-being.

A dietician recommended a formula based on hydrolyzed whey protein. This means that there is dairy in the formula. Even though it is partially broken down to “aid digestion,” this formula poses a risk. So, we’re starting slow. To make her 24-calorie-per-ounce formula, I usually make batches of 10 ounces of water mixed with six scoops of formula. So today, one of those six scoops was the new formula. I’ve read that it can take up to two days for the intolerance to rear its ugly head with symptoms like diarrhea, vomiting and general fussiness due to the pain. So I think I will stick with the low amount of new formula so that I don’t completely bombard her system with dairy.

It’s possible that she’s already outgrown the intolerance (though it usually happens closer to one year). Or that she never even had it to begin with. I’m not sure I ever explained that her “cow’s milk protein intolerance” diagnosis has never been proven scientifically. It’s just a theory based on her lab results and symptoms. Cody and I have read about another possibility: lactose overload. This could’ve happened when, after experiencing painful reflux, Stella nursed for very short periods (because taking in larger volumes exacerates reflux), giving her tons of lactose-heavy foremilk and little to no fatty hindmilk. All that lactose may’ve overwhelmed her system, which just couldn’t break it all down, causing damage to her intestines, weeks and weeks of diarrhea, terrible stomach pain, etc.

Another bit of motivation for this somewhat daring move is that her current formula consists mostly of corn syrup. Not the best quality nutrition. Might as well give her sugar water and a multivitamin. Then again, with all the corn syrup she’s eating, shouldn’t Stella be morbidly obese by now?

She was fussier than usual tonight, and her cheeks are rosier than usual, so I am already worried. Not sure we’ll have the guts to continue this trial much longer. In the meantime, I’ll be watching her facial expressions, cheeks, and general mood very carefully.