To Our Lovely Friends & Family

“The human heart is so delicate and sensitive that it always needs some tangible encouragement to prevent it from faltering in its labour.” -Maya Angelou

The process of tube weaning is above all incredibly emotional. In a single minute, we can go from feeling hopeful, to frustrated, to overwhelmed, to excited, to impatient. And yet, we must find way to present as calm to Francesca. The most stable element of the last twelve days has been the amazing love and support we have felt from our friends, family, and faithful readers.

Thank you for your financial gifts, play dates, emails, blog comments, and phone messages (even if we have not had time to return them). You truly provide the encouragement we need to move on from a difficult moment. It has been so touching to have people, from those who have known us all our lives to those we have only met online, come together to offer their faith and support.

The information and inspiration we have received from the tube weaning community has been invaluable. A particular thank you to Stella’s mom, Amber, for the introduction on her blog, The Life and Times of Stella. I have spent countless late nights, reading the blogs of other successful tube weaning stories and hope that soon ours will enter those ranks as well.

I Guess We’re Having Eggs for Breakfast

On Sunday night, right before bedtime, Francesca helped herself to the pantry. Alfie walked into the room and said “I guess we are having eggs for breakfast.” And, we left the mess until morning to clean up. Some messes are worth it.

A Bit of Beta Carotene, An Ear Infection, & A Fight for Food

The last two days have been filled with moments of frustration and triumph. In a recent suggestion from Marguerite Dunitz-Scheer, she advised that we are making food too readily available and that we need to put Francesca in a position in which she needs to “fight for food.” We have begun to implement this strategy and to increase our understanding of what it means to let go, while we “wait” for Francesca to request food, “watch” as she interacts with it (or takes it directly to the trash), and “wonder” when she will truly begin to embrace the act of eating.

Yesterday, our biggest triumph happened during a daily ritual. I was reading stories to Francesca at nap time and she asked for a carrot. We presented her with shredded carrots, carrots shaped like coins, and carrots cut to look like flowers. None of those were what she had in mind. She wanted carrot sticks. As we read, she slowly nibbled away swallowing some and spitting some out. In total, she probably had a couple teaspoons of three different carrots, but who’s counting?

Over the last week, we have watched Francesca get thinner, but have not had a concrete measurement of exactly how much weight she had lost, until today. We went to our weekly doctor appointment this morning dreading and eager for the exact amount. Francesca knows the routine well and can even push the buttons on the scale by herself. We have spent countless times crossing our fingers for a weight gain. Today, however, we were fully prepared for a loss. Francesca has lost about 5% of her overall body weight. She dropped from 10.42 kg (22.9 pounds) to 9.99 kg (21.9 pounds). The Graz method will let her lose a total of 10% of her total body weight.

Even though we were expecting a loss, it is never easy for parents of a failure to thrive baby to watch the number on the scale drop (it took at least a full month to gain that pound). However, the more frustrating news is that Francesca also has her first ear infection. We knew she had been fighting one off, but she had started to feel better (and now worse). We expect that this challenge has impeded Francesca’s progress all along. Her doctor told us that she has a very high pain threshold and that “normal” children with such an ear infection would have been a lot more vocal and totally uninterested in eating. Francesca has never been a complainer.

As difficult as tube weaning has been, we did not want an ear infection to force us into taking a break. Luckily both Francesca and Marguerite Dunitz-Scheer seemed to agree. This afternoon, in spite of feeling miserable, Francesca desperately tried to let go of her fear of food. She had three sessions of exploration. The first was while reading books and playing with various cereals. The second was biting pretzels off of her food necklace. The third was pretzels out of a bowl while watching 101 Dalmatians with her Uncle Blake. At each session, she swallowed some and spit some out, totally covering her clothes in chewed pieces of food.

Miniature bites of carrot and laundry with partially masticated food on it are just enough to continue to instill the faith in me that we are all prepared for (and succeeding in) the “fight for food.”

A Favorite Food Mystery

In an effort to help Francesca discover her favorite foods, we have provided a variety of options over the last week. Some of them she has acknowledged and others she has completely disregarded.

Here are some of the foods we have tried: 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…

As of this morning, Francesca’s favorite “food” is ice cubes.

A Few Crumbs

Here are a few crumbs of the last two days of tube weaning…

We made popcorn on the stove and added loads of butter, salt, and food coloring to create pink pixie popcorn. Francesca loved listening for the little pop, pop, pop of the kernels. It was delicious and I have now eaten enough to have a stomach ache two days in a row. Amazingly, Francesca was curious and hungry enough to try it too. She ate 10-12 pieces yesterday and 6-10 pieces today while we watched Scooby Doo.

Slowly, we have removed many of Francesca’s toys, stashed them away for another day, and replaced them with edible projects. We have gingerbread houses (both large and miniature), gingerbread cookies in many different shapes, gum drops, bug shaped graham cracker cookies, miniature pink yogurt covered pretzels, gobs of frosting, gummy bears, dried fruit, and an array of food-jewelry in the family room. There is a bowl of cereal in her crib.

Francesca redecorated the house last night, smearing chocolate frosting all over the walls in several rooms. When we walk through the kitchen, dining room, or entry, our feet stick to the layers of fruit juice, peaches, maple syrup, and pears covering every surface. Pouring from container to container is no longer just a bath time activity, but an all day long activity. To keep up, we run the dishwasher two to three times a day.

All of Francesca’s food is served on princess-style tea dishes. Fortunately they are plastic, as she has recently begun to “clear the table” as soon as the food is ready. She removes the dishes one at a time, in silent protest, taking them to the garbage, dumping the contents, and delivering the dish to the sink. For her, it seems therapeutic and for us, discouraging.

In an attempt to add a few more calories, we added flavorless maltodextrin to her water, but found that it is only mostly flavorless. To a discernible palette, like Francesca’s, it is not only detectable, but also unacceptable. So, it will not be a successful method of decreasing her potential weight loss during these challenging days.

We bake something new every day…cinnamon rolls, cookies, loaves of french bread, banana bread. Francesca has tried many things with baked goods: smelling, disregarding, throwing, smashing, soaking, crumbling, ignoring, decorating, touching, disposing. We patiently await the moment when she will decide to try eating them (and we dare to hope she will get to the point where she cannot stop eating them, like her father).

The primary focus of each day is to make food available and interesting to Francesca. Beyond that, we do not ask, encourage, bribe, suggest, redirect, or recognize. The process is completely child-centered with free reign for her to explore (or ignore) her hunger pains and the properties of food. At the end of the sixth day of tube weaning, Francesca is a little lighter, our floors a little stickier, our eyelids a little heavier, and our hearts a little more hopeful.

Living on Love and Gummy Bears

The highlight of today was watching Francesca shove three gummy bears into her mouth, chew them, and spit them out on the floor. She followed-up with one coin shaped piece of carrot and a little piece of chocolate, both of which she actually swallowed. For the first time ever, Francesca looked like a typical toddler with sticky hands and food on her shirt.

In watching Francesca, I can tell that she is contemplating and processing her new circumstances. She seems to understand the premise of what is going on, but is not to the point of trusting and embracing food…yet. The most incredible part to me is that she is not angry or upset, just thoughtful and uncomfortable.

Today, Francesca went almost 24 hours without a tube feed (she threw-up her last feed at midnight last night). Her diapers are starting to hang on her little body. Her stomach has shrunk and she can no longer tolerate a six ounce tube feed in one sitting. She is too hungry to nap. But, she is also happy, energetic, agreeable, and excited to be exploring the world of food. We could not be more proud of her bravery and strength.

Thank you to all of our friends and family for their ongoing support, encouragement, and faith that Francesca will uncover the joy of eating. She is making critical steps in the right direction and the most important part is that it is on her terms. Today, Francesca choose to live on love and gummy bears (plus 50% of her normal tube feeds).

From the Science of Growth to the Art of Food

Alfie and I have often half-joked that Francesca is our “little science experiment.” We measure out medications and probiotics, mix them with water, and essentially inject them into her system. We methodically calculate how many calories are necessary in order to increase our success for catch-up growth (110 calories per kg). We do math equations to determine the best combination of time, volume of calories, minimum vomiting, and maximum growth. We take her to the doctor for weekly or monthly weight checks, depending on how things are going. We record every ounce that goes in and every ounce that comes out. We have taken daily stool samples to her gastroenterologist to be tested for any sign of blood. She has been forced to drink radioactive material of some sort so the doctors could analyze her gastric emptying. She has been strapped down under a machine to look directly at her digestive system twice, once to make sure that the tube had not perforated her stomach and another time to locate a missing part of her feeding tube. She has been poked, prodded, examined, and analyzed by pediatricians, gastroenterologists, endocrinologists, geneticists, allergists, naturopaths, acupressurists, speech pathologists, feeding therapists, occupational therapists, and sensory specialists. Some of these scientific efforts have yielded answers and others have labeled Francesca a “medical mystery.”

The culmination of our dedicated so-called “science project” has been the incredible fact that Francesca is back on the growth chart at a weight typical of other children her age. This monumental success was our intermediate goal.

And now, we have moved on to the culinary “art project” and our ultimate goal of helping Francesca develop a positive relationship with food. We just completed day three of the tube weaning process, under the guidance of Marguerite Dunitz-Scheer of the University Children’s Hospital Graz in Austria. There have been aspects that have been more challenging than expected and aspects that have been less challenging. The basic premise of the program is to decrease the calories that Francesca receives through her tube and increase her exposure to food through play. For the past three days, she has received 25% fewer calories through her tube feeds. Francesca has been incredibly resilient to these changes, even though we know she can sense that her whole world is shifting. We are challenging her reality and asking her to do something extremely difficult. She has needed extra comfort and has spent an atypical amount of time in my arms and on my lap. On the second day, she did have a complete crying, screaming hungry tantrum during which she tried to retch and gag to make herself vomit (something that has become a control mechanism for her). But for the most part, all of our efforts have been aimed at creating fun experiential learning opportunities for Francesca to explore food. We have “play picnics” using tea sets at noon, play peek-a-boo with mini sandwiches, build gingerbread houses, cut out cookies, cook meals together, fill the house with aromatic baked goods, and create jewelry using dried fruit, marshmallows, yogurt covered pretzels, and cereal (and…we wash lots of dishes).

To be honest, this process is shifting all of our perspectives as we slowly move towards Francesca’s first bite. Tomorrow, we drop her tube fed calories to 50%, increase our faith and trust, and continue to facilitate Francesca’s experiential learning as she creates another day’s worth of artistic culinary masterpieces.

The Most Important Questions

As I reflect on our first day of tube weaning, I am drawn to a quote that has recently kept me sane during challenging moments.

“i beg you…to have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. don’t search for the answers, which could not be given you now, because you would not be able to live them. and the point is, to live everything. live the questions now. perhaps then, someday far in the future, you will gradually, without ever noticing it, live your way into the answer…” (rainer maria rilke)

The Graz Netcoaching program puts it succinctly as “wait, watch, and wonder.” I am trying to transcend my need for information and answers, trying to let go of the obsession with measurements, charts, and statistics (which, by the way, Francesca was 22.9 pounds at her weight check today), trying to move past the memory of Francesca’s suffering and my anxiety about her health.

For now, the most important questions are… what does a pear smell like when you smash it up, how tall can we build a cookie tower, what looks best on a food necklace, can we make a princess out of rice krispies… And, the best part is that there does not have to be a right answer.

As Francesca uncovers the joy of eating, I just might uncover the joy of the question.

Just Keep Swimming

We celebrated Francesca’s 2nd birthday with a Finding Nemo themed party on Saturday! It was so much fun to be surrounded by friends and family. Francesca had a fabulous time being escorted by balloons, playing with her friends, watching excerpts from Finding Nemo, and blowing out the candle on her elaborate Nemo cake (twice)!

We picked Nemo as the theme for Francesca’s party based on the fact that she adores the movie. However, it was not until I started actually planning the details of the party that I realized exactly how meaningful the movie’s message had become for us.

To be perfectly honest, I normally skip the first scene where Nemo’s mother is eaten by a shark. This is only partially to protect Francesca and mostly to protect myself. I think that all parents go through an incredible and somewhat more intense than expected transformation the moment their first child is born.

The day Francesca entered the world, I became consumed with a love more powerful than I could have imagined and with that love came the equally powerful inverse of fear. Just like Marlin, every parent wants to protect their children from all harm. In the last two years, I have felt more depths of both rational and irrational fear than ever before.

There have been the more normal parenting fears of whether or not Francesca was meeting her developmental milestones, would end up throwing a temper tantrum in public, or was going to poop all over a relative stranger (which to my mortification really did happen).

And then, there have been the intense fears relating to Francesca’s health issues. From the incessant worry about her growth, caloric intake, and relationship with food to the moments of sheer panic (the kind where breathing becomes labored and everything moves in slow motion) as we sat in the hospital waiting for the nurse’s surgical report or listened to the siren of the ambulance from the inside or prayed that our infant would not have to undergo an emergency operation by a pediatric surgeon we had never met.

So, yes, I have all of Francesca’s doctors on speed dial.

As I planned Francesca’s party, I spent time laughing at and identifying with Marlin’s many parenting fears. And I realized that we are at the point of having been swallowed by a whale and a little voice is interpreting the “whale speak”, just as Dory did for Marlin and, in Dory’s words, that voice is saying “It’s time to let go! Everything’s gonna be all right!”

Today was our last normal day of tube feeding (if you can call tube feeding normal). Tomorrow we begin the tube weaning process. We are ready to let go of our fears. As I put Francesca to bed, I told her that tomorrow she was going to start to learn how to eat and I asked her if she was ready. She confidently answered “yes” (not a standard response from a two-year old). I told her that I could not be more proud.

With the help of Finding Nemo, our fundamental philosophy is to “Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.”

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The Reality of Chubby Cheeks

Francesca has chubby cheeks!  I wish I could claim they are from eating lots of fruits, vegetables, and lean meats…or even ice cream, pizza, and french fries, but unfortunately that has not been our reality.  Francesca has never eaten those foods or any food for that matter.  All of her nutritional needs have been met by a complete formula for tube-feeding and devoted, but exhausted parents.  Our reality has been regular weight checks, infinite doctor’s appointments, and inconclusive medical testing – every waking and sleeping moment consumed with getting Francesca to do something that comes naturally to other children: to grow.

We found out on November 10, 2009 that for the first time in twenty months, Francesca was back on the growth chart at twenty-one pounds and ten ounces, the third percentile for weight.  When our doctor turned her computer screen around to show us the proof, a little dot actually sitting on the line for normal growth, the room was filled with emotion.  All of our hearts swelled with relief and our eyes filled with tears.  Contained in that little dot were so many complexities of our struggle over the last two years (see “Francesca’s Story” for a more complete picture).

Francesca is currently 100% tube-fed through a small little port that goes directly into her stomach.  She eats virtually nothing by mouth.  In the past, she has occasionally (once a week, maybe) taken small nibbles of a few foods (apple, corn chips, carrots), but to be honest, they are microscopic and calorically completely insignificant.  Her feedings are regimented, according to a clock, every four hours.  We aim to maximize the volume of formula and minimize the amount of vomit.  Everything that has gone into her or come out of her over the last year is recorded on detailed spreadsheets.  Francesca has never experienced the joy of eating.

That little dot on the growth chart not only symbolized the relief of no longer having a malnourished child, but it also represented the potential of a new and daunting challenge.  We are ready to relinquish control and shift our focus from battling for every ounce of weight gain to endowing Francesca with the power to choose and trusting that she will listen to her body, overcome her fear, and be brave enough to uncover the joy of eating.  This process of letting go is going to be both terrifying and liberating for both Francesca and us, as her parents.

Francesca has attended several therapies weekly for the last 15 months and has made absolutely no progress on her oral intake.  In desperation, I have spent many late nights scouring the internet for information, success stories, and hope.  We finally found our solution in a clinic located in Graz, Austria that has specialized in the psychology of pediatric feeding disorders for the last 20 years.  They have staggering statistics, heart-moving success stories, and a logical therapeutic philosophy.  We know we will need endless strength, but have faith that with their guidance, Francesca will someday ask for seconds at the dinner table.

We completed our due diligence, talking to parents around the world, and found nothing but hope.  I have been moved to tears over and over again, listening to the successes (and challenges) of many  families whose children have finally internalized the joy of eating (See Blog Roll).  I have found support, encouragement, and testimony of it being the most difficult and also the best decision they ever made.  Without coverage by our insurance company, we have wired our registration fee, completed the intake paperwork, and scheduled a start date of January 4, 2010 to begin their netcoaching program (an online tube weaning program).

The program will likely take four weeks.  I plan to update this blog to share our moments of triumph and struggle.  Francesca is an incredibly bright, strong-willed, resilient, and independent character.  She has taught us so much about patience, sacrifice, strength, and love.  We are ready to take this leap of faith, knowing that as we jump, there will be moments where we have no ground beneath our feet, but that we will eventually land on the other side believing in Francesca, as she talks with her mouth full.  We appreciate your support as we prepare to embark on the journey to help Francesca uncover the joy of eating.

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