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Home » Special Circumstances: Multiples, Adoption & Special Needs

Blessings on Our Meal: Parenting a Child with Severe Feeding Issues

Submitted by on Tuesday, October 20 20093 Comments

By Jonna Higgins-Freese

Jonna and her children

Jonna and her children

I’m making breakfast for my two-year-old son who stands on a stool next to me. Oatmeal simmers on the stove. “Lid!” Reuben says, pointing to the rattling pan and signing that he hears something. I turn off the flame, then slice an avocado, which I slide into the Vitamix blender. I add half a cup of oatmeal, an ounce of last night’s Parmesan pan-fried pork, applesauce, carrots, and milk. “Mix!” Reuben says, smiling up at me happily as I start the machine.

“Okay, buddy, let’s have breakfast,” I say, strapping Reuben into his high chair. I open the tab of his Mic-Key button, which looks like a beach ball valve on his abdomen, screw in the extension tube, and insert the tip of a syringe filled with the food I’ve just made. I sit down next to Reuben and push ten milliliters, about the volume of an oral bite, directly into his stomach through the tube. Meanwhile, I offer him banana slices and cereal, but he leaves them on his tray.

Reuben’s unusual relationship to food wasn’t always such a comfortable part of our routine.

“Oh, I know,” Other parents say, “my Jimmy is a picky eater, too.” I don’t want to be obnoxious, so I don’t say what I’m thinking: Reuben isn’t picky — it’s that he’s not an eater.

In the Beginning

Reuben’s feeding issues stem from medical complications that arose during birth. He spent 11 weeks in the neonatal intensive care unit, undergoing increasingly invasive treatments to save his life. I could not feed him, talk to him, or touch him. (Unlike some critically ill infants who thrive when touched, Reuben’s blood oxygen levels dropped with any stimulation). But I could pump breastmilk for him. Even though he was so ill that he received only a few milliliters of it each day through a tube into his stomach, pumping became my way of connecting with him and embodying my faith that he would recover.

The doctors warned us that feeding difficulties were often a side-effect of the treatment, but my husband and I assumed that once Reuben was allowed to eat, he would.

He did not.

Common Feeding Difficulties

Oral Aversion
Oral aversion occurs when a child is reluctant or refuses to be breastfed, bottle-fed, or eat. The child may have negative associations with food or other objects near or in his mouth, or, in some cases, a child develops oral aversion when she strongly dislikes the texture of certain foods. This often happens when a child has been tube-fed for a long time due to illness or prematurity.

Dysphagia
Dysphagia is when the swallowing of food causes it to not pass easily from the mouth to the stomach, which may cause food to get stuck in the lungs and throat. Children with this disorder may also begin to refuse food. This disorder often occurs as the result of another condition, such as prematurity, cleft lip or palate, and large tongue or tonsils.

Comfort in Breastfeeding

We started by offering to nurse him several times each day. Although he never ate enough to allow us to decrease his tube feedings, breastfeeding did give him some practice at sucking and swallowing, and provided him with positive oral experiences. Each time, he would shake his head excitedly, say “ah-ah-ah,” and dive toward me. Then, he would close his eyes and raise his eyebrows in an expression of deep contentment as he settled in. Now, at nearly three, he still asks for nummies as a way to reconnect when I return from work, or when he is particularly tired or upset. He barely latches on, but finds comfort in snuggling.

Through the time that I pumped breast milk for Reuben and he recreationally nursed, I sometimes felt criticized by people on both ends of the spectrum of parenting philosophy. Some people couldn’t understand why I would make the monumental effort to pump milk for 19 months. At other times, I felt pressure from exclusively breastfeeding mothers because Reuben used a nipple shield, didn’t get his nutrition “from the breast,” and received breastmilk calorie-enriched with formula. I had to learn to trust my own instincts, knowing that I was providing the best mix of experiences and nutrition for his unique needs.

Reality Sets In

The doctors reassured us that Reuben would learn to eat when we introduced a bottle or solids. But he did not. Months went by, and the tube remained in his nose; then, the day after his first birthday, it was replaced by one in his stomach. Some family and friends couldn’t understand why Reuben did not eat by mouth, suggesting that the problem would be solved if we simply held his tube feedings and offered only the bottle. They shared stories of breastfed babies who were forced into taking the bottle at day care. We knew this wouldn’t work, even if we had been willing to try it. Babies like Reuben have been traumatized by their oral experiences. They are so out of touch with their bodies’ signals of hunger and fullness, and so lacking in the basic motor skills needed to suck and swallow, that they will starve to death without tube feedings.

But I also understood their discomfort. Eating is central to daily life, social interaction, and celebration. Reuben’s refusal to eat felt deeply strange. More than once, even though we knew all of the medical reasons for Reuben’s behavior, Eric and I asked each other in frustration, “Why won’t he just eat?”

At each meal, I prepared a bottle and a bit of food, knowing in advance that the food would ultimately go in the garbage, and the contents of the bottle would be poured into his feeding tube. “Try to relax,” my husband advised. “Sometimes you focus on the negative, and I’m sure Reuben picks up on that.” He was right, but I wasn’t sure how to remain consistently cheerful when I prepared three meals a day for a child who refused to put them in his mouth.

Easy to Love, Difficult to Discipline by Becky Bailey helped me realize that we can’t ever force another person to do anything; all we can do is set up the situation so it’s easier for them to choose what is safe, healthy, or polite. Or, in the words of one specialized feeding program we researched, “We teach our families the proper division of eating responsibility; it is the child’s responsibility to eat, and it is the family’s responsibility to provide the right environment, foods, and opportunities to eat.”

Easy to Love, Difficult to Discipline
By Becky Bailey

Easy to Love, Difficult to DisciplineEasy to Love, Difficult to Discipline provides parents with seven basic skills to turn conflict into cooperation through development of self-control and self-confidence on the part of both the parent and child. The focus of the book is to teach parents to learn to understand both their and their child’s motivations for certain behaviors and then how to help their child and themselves to improve.

Seeking Treatment

As our knowledge of feeding issues and confidence as parents increased, we became evermore frustrated with the hospital feeding specialist’s behavioral approach, which didn’t seem to work for Reuben or our family. He suggested we strive to “increase Reuben’s compliance with the spoon” and instructed us to set a timer for a three-minute “meal,” then touch the spoon to Reuben’s lips and say “bite” every 30 seconds. To our surprise, this worked well — for three meals. After that, Reuben screamed and sobbed, turning his head away from the spoon. Although we didn’t know the phrase “feeding with love and respect” at that time, we instinctively felt that seeking “compliance” was not compatible with our parenting philosophy.

When we consulted a different specialist, I immediately felt more comfortable. She approached Reuben and greeted him gently, getting to know him first as a person. She watched me feed him, then sat down to offer carrot sticks and Gerber Puffs and observe his reactions. She explained that she saw eating as a complex skill with sensory, psychological, behavioral, and biological components.

With her help, we discovered that Reuben was not comfortable with the preliminary sensory processing required for eating: He hated to have food on his face. She showed us how to work with carrot sticks and dip, as well as vibrating tools, to help him learn to tolerate sensations in and around his mouth.

She also suggested that Reuben requires strong flavors in order to locate food in his mouth. Refried beans and roasted carrot puree loaded with garlic and tahini became early favorite foods. Still, he only ate a bite or two of these foods at each meal.

Tips to Feeding with Love and Respect in Special Circumstances:

  • Let go of your sense of how things should be, and accept your child for who she is.
  • Approach your child’s doctors and other care providers as members of the team. They are experts on particular medical procedures, treatments, and diseases; you are an expert on your child. You should expect that medical professionals will listen to your experience and opinions. It is okay to ask questions like, “What other options are there for treatment?” or “What therapies are offered at other facilities?”
  • Seek out other parents and families in similar situations for support, advice, and alternative options.
  • Accept whatever is possible in your interactions with your child around food, whether it is making that food from your body or opening a can of formula with love.
  • Forgive yourself. Whatever decisions you made were based on the best available knowledge you had.
  • Trust your own intuition and your knowledge about your child. Be cautious of being influenced by those who see your decisions as either too child-focused or insufficiently pure from an ideological perspective.
  • Abandon any expectation that you will follow some perfect or pure set of principles.
  • Focus on the social, psychological, and behavioral aspects of mealtime and the possibilities for bonding they provide.

Relying on Other AP Practices, Too

Because feedings were complicated and sometimes tense, we found that other aspects of Attachment Parenting helped us maintain a secure bond with Reuben. I don’t own as many different wraps or know as many different ways to tie one as some people, but I consider myself a babywearing expert because I can get a baby into and out of a sling without dislodging a feeding tube from his nose — and have, on occasion, administered feedings while wearing the baby.

Cosleeping allowed us to ensure that Reuben didn’t become tangled in his tubes during the overnight portion of his feedings. Through soggy experiences, we learned all the ways the feeding tube could leak — once all in one night. First, I was awakened by cold wetness on my backside when the tube connected to Reuben disconnected from the bag containing his food. Two hours and a sheet change later, the medical port on the tube slipped open. This time we put a towel over the wet spot and went back to sleep, only to be awakened again when Reuben squirmed the tube extension off the button on his stomach.

People who say eating in bed is messy have no idea.

Feeding with Love and Respect in Special Circumstances

Over time, we have found ways to make Reuben’s tube feedings a nurturing and respectful experience for all of us. I choose the content of Reuben’s diet when I make his homemade blended formula (though we also use canned formula). Context is also an important part of eating, and we have learned to integrate Reuben’s tube feedings into our family meal time. We put whatever we are eating on Reuben’s plate, and he usually chews at least some of it. Eric pushes Reuben’s tube feeding while we all talk about our day. Before we start, we hold hands and say something for which we’re grateful. Then I smile at Reuben and ask, “Now what?” and he grins broadly as he says, “Blessings on our meal.”

Someday, the doctors assure us, Reuben will move to eating all of his calories by mouth and I will complain with the mothers of other teenage boys about the difficulty of keeping food in the refrigerator. Until then, we have learned that every kind of meal, whether intravenous or tube-fed, hung or pushed or pumped, eaten by mouth from the breast or the hand or the spoon – all of these are a blessing.

Family Resources

  • MealtimeConnections.com provides feeding therapy and consultation focused on developing a positive partnership between therapists and families, as well feeding in the context of a positive parent-child relationship. I especially recommend their “Mealtime Notions,” which are feeding aids based on the Mealtime Connections philosophy that “feeding is first and foremost a special relationship between the child and the feeder”; and the Homemade Blended Formula Handbook, an indispensable philosophical and practical reference for families of tube-fed children.
  • The Pediatric Encouragement Feeding Program at Kluge Children’s Rehabilitation Center is an intensive, interdisciplinary program focused on weaning children from tube feedings in a supportive environment.

3 Comments »

  • Stephanie says:

    Congratulations to you on the wonderful job you are doing with Reuben. I am so impressed with your dedication and perseverance.

  • Michele B. says:

    So awesome the work you do for your boy – and it is work! – and the love you show him by respecting him. It was SO enlightening reading about your experience. My own son is categorized as failure to thrive (he runs around and screams and yells and does everything any other 2 year old has done). He just weighs almost the same as he did at age 1, probably only 5 pounds heavier.

    Congratulations – and you are so lucky to have discovered AP at an earlier age than we did!

  • Hi, I like your blog. This is a informative site and I wanted to post a little note to let you know, great job!
    Thanks,
    Meme

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