tube feeding

Day 7, Story 7: The Hunger

Posted on by amberhj

A short memoir in 3 parts.

My wonderful daughter, Stella. (Taken during her first Christmas season.)

This story is dedicated to Erin, Sylvia, Rocio, and Hatice.

Introduction

At 31, I was the neurodivergent mother of a neurodivergent baby. But I didn’t know that. Not about my daughter and not about me.

She nursed just as the books say a baby should, for about a week. Then she battled. The breast, the bottle, me. 

My sanity frayed because I knew there was a problem that no one else could see.

I craved empathy like a drug addict in withdrawal. I searched day and night and found it nowhere. Not even for sale. Therapists, several lactation consultants, a postpartum doula for Seattle rockstars—we couldn’t have afforded her anyway—seemed to serve only judgment. So that’s all I ate.

We both starved. 

Sick with anxiety, I lost 30 pounds in the first two months of my daughter’s life. I tried drinking olive oil. Straight up. Part calorie loading, part penance. I gagged and spit it up. Just like my baby when I tried to feed her. 

It felt as though a lifetime of not-quite-rightness manifested in an inability to feed my own baby. In the early days, when not alone, I faced doubting doctors, and well-meaning but dismissive or outright annoyed others.

I became a mom not when I gave birth to my daughter, but when I pushed through to the other side of despair, for her.

*

Part 1: The Tube

Stella was born in August. Four months later, baby’s first Christmas was different than I expected. 

Stella’s cheeks were red and raw due to frequent attaching and removal of various medical tapes. I tried different types, hoping to secure her nasogastric feeding tube to her face while inflicting the least possible amount of dermatological and psychological damage.

Meals were not bonding moments. They were medicalized ordeals. Picture, if you will, a portable pump. Like an old school gaming system with a few buttons and a digital read out–but you only win if you can stop playing. 

Along with the pump there were large syringes for gravity feeds, plastic IV-style bags that connected to the pump and smelled like new shower curtains, and hypoallergenic formula that soured quickly. 

The nasogastric tube went down Stella’s throat and into her stomach. When I tube-fed her, I felt more like a surgeon than a mother. Before each tube feeding began, I used a stethoscope to listen as I sent a puff of air, from an empty syringe, down the tube. A telltale popping sound would indicate that the tube was in her stomach. Rather than a lung. 

Then it was time to hook up the tube and run the pump. I’d monitor Stella carefully for any gagging or gurgling. 

Mishaps were common. Sources of trauma. Stomach contents would come up and out of the tube. Blood would surround the tube in Stella’s little nostril. The pump would malfunction and feedings would need to be started all over again. 

The worst of the worst parts was that the tube would come out regularly. It’s astonishing to me, in hindsight, that the emergency room was the only available source of help. Not only were these constant hospital visits expensive, they were time-consuming, exhausting, and traumatizing for my daughter.

After all the waiting, tiny Stella would lay on a hard bed in the harsh light of an exam room. With masked strangers hovering over and holding her down, the tube would be replaced while she screamed. The kind of scream that alerts a mother’s brain to a threat to life and limb. 

The tube would then come out again the next day, maybe the day after. 

So I learned how to put the tube in myself. This process requires planning and calm. First, you lubricate the tube, then you force it down the throat, somehow hold it in place with one hand while making sure baby doesn’t grab or pull the tube and also taping the end of the tube to baby’s face with the other. Finally, you check the tube’s placement with the stethoscope and puff of air and popping sound.

During one replacement effort, my nerves and her screams caused the tube to go in her nose and out her mouth. A little jolt of horror. I tried to insert the tube while she slept. It half-worked once.

To get enough nutrition from a tube, a baby becomes a machine. Stella needed to be fed every three hours, and feeding could take up to an hour. I worried that my extreme tiredness would lead to mistakes. What if the tube wound up in her lung? 

I lived with the fact that this whole disaster unfolded because my milk caused my baby pain. Every time she nursed, she wound up in agony. She would cry and turn away. In hindsight I realize she was fighting for her life. We both were. 

Instead of feeding, she would gnaw her fingers, which smelled of stomach acid.

I worked around the clock to get enough calories into her. I used a spoon, a tiny cup, a small syringe, causing it to simply run down her throat. This wasn’t “feeding.”

Thanks to this continuous labor, she “ate” just enough to get by, before the tube. She didn’t lose much weight, and she did grow longer, but she didn’t gain any weight either. 

I just needed to try harder. ‘You have to hold her like this,’ said one lactation consultant. ‘You haven’t established a proper latch,’ said another. ‘You don’t seem comfortable. Let her come to you instead of leaning toward her,’ said yet another.

Later I would realize that one of them was at least partially right. Being neurodivergent, I was so used to following the lead of others, so used to being wrong, I couldn’t relax and let someone come to me. Not even my own baby. I felt I had to bend over backward, or forward in the case of nursing, to keep an interaction from falling apart.

At first, no one believed me. But then she started to look pale, even a bit gaunt, with a grayish cast. Her resistance to nursing or bottle-feeding turned into an all-out aversion. By then, the problem was so severe that a feeding tube was necessary. It wasn’t inevitable. 

With the benefit of hindsight, I sometimes wonder how it all would have played out if I was neurotypical and communicated neurotypically? What if I was more reasonable, less brutally honest? More clear, less direct?

“We just have to get her through this,” I would think constantly. After all, she was a healthy baby. She just hated to “eat.” That’s all.

Meanwhile, my daughter and I were alone for up to 12 hours a day, five days a week. Compared to my pre-pregnancy self, I was skin and bones. I couldn’t take care of myself. I really couldn’t.

We didn’t have access to a car most days. Freedom came from taking walks, between tube feeds, through the park and by the shops along the strip near our rented house. Stella and I would stop in just about every day at my favorite coffee joint and paper goods boutique, and the grocery store. 

Here and there, as usual in an area of Seattle so close to downtown, I’d see syringes on the ground during our long walks. They were wedged into the cracks of sidewalks or nestled in the mulch of garden beds. Part of the infrastructure. 

These syringes were functionally different from those I used to feed my baby, but syringes all the same. I noticed that my reaction to seeing discarded needles on the ground was no longer involuntary disgust or general frustration with a system that doesn’t care for people. Concern became visceral rather than abstract. I thought, “That’s someone’s child.” 

Stella and I venture out for one of our walks.

*

Part 2: The Choice

In the thick of the tube feeding haze, Christmas season in full swing, I watched television while Stella napped. A holiday-themed diaper commercial showed angelic infants dreaming in their bassinets with a carol-turned-lullaby as soundtrack. Their smooth, round cheeks were unmarred. Their peacefulness complete. Against my will, bitter tears burned my eyes. I found my entire self twisted with envy, boiling with rage.

Until one week before Stella’s birth, I worked as a copywriter at an ad agency. I’d written prose about large cinnamon rolls and slightly larger ski resorts. I could imagine the creative brief, concept, pitch–the entire process that resulted in that carefully targeted manipulation. But the nerve hit was so deep, beyond the reach of rationality. In the part of me that knew I was defective.

Since then, there have been so many revelations and reversed courses in my path through motherhood, far from any well-worn route. But I now look back to this low, just me sitting alone in the artificial glow of an overwrought diaper commercial, as a catalyst.

During that moment, I knew I couldn’t stay there, in that dark place. Jealousy doesn’t sustain you. It drains you. Anger isn’t nourishing. It eats you. 

I sat in my fury and envy. Confronting the ugliness, I made a choice to not feed it with self pity. It was not going to be easy. I didn’t know how. I just knew something had to change. If not for my sake, then for Stella’s. It was a start, or a promise to start.

That decision soon led me to write. I’d started a blog, half-heartedly. Perhaps I could use it to keep my feelings, unlike the formula, from turning rancid. 

I shared updates with the family on how Stella was faring and how we were managing. Her latest milestone, most recent medical appointment, and how much she was taking in by tube–each milliliter accounted for in a spreadsheet I referenced in reports to Stella’s doctors. Increasingly, I also shared my experience in the struggle.

In the weeks that followed, the blog became a beacon. I began hearing from mothers, across my city and around the globe, who’d found our story. Their babies, too, refused to eat and were given feeding tubes with no plan for weaning from the tubes. No end in sight.

I got to know several of these women, sharing phone calls and emails, desperation and encouragement. We did the same anxious things and thought the same anxious thoughts. Our feelings, stories, and longings were not just similar, but practically identical, despite our differences in cultures and backgrounds.

There was Erin with her grace, sense of humor, and a baby boy who seemed a lot like Stella and was born within days of her. Hatice was passionate, honest, and generous, and even sent Stella presents from Singapore. With Sylvia, originally from Costa Rica, her soul was so torn apart that it made her courage all the more moving. Rocio showed such depth of devotion and commitment to her premature son, helping him overcome his feeding aversion after months in the NICU.

I still marvel at how we were all able to connect on a little virtual island in the middle of the internet ocean. Alone, together.

Thanks to them, I began to realize that I wasn’t a failure or problematic or a pain in the ass for complaining to doctors constantly. I was a mom, doing her best in a challenging, isolating situation. 

We had empathy for each other. And soon I started to develop empathy for myself. When perceiving an absence of empathy from others, I no longer experienced a free fall into anger, allowing me to be more present. I now had a foundation to stand on.

By the time Christmas came around, I had developed a bit more confidence. I found moments of peace even in the face of the same tube-centered reality. I started to tune into Stella and trust my instincts, rather than look to “experts.” That’s when things started to change.

*

Vintage “Happy New Year” card

Part 3: The Leap

After months of tube feeding, Stella hit a plateau. She never took more than about half of what she needed calorically for the day by mouth, the other half by tube. And aside from some anomalies, that’s where she stayed.

I knew that the tube had to come out. The pain that caused Stella’s feeding aversion was gone. Also eliminated was the pressure from me in trying so hard to get her to nurse, which worsened the aversion. She’d had time to learn that eating was not a threat, not a precursor to pain.

The tube had become more of a hindrance than a help. Making swallowing difficult and allowing a gateway for reflux. Overfeeding was easy, since there was no hunger gauge and only a prescribed amount of formula per day, so vomiting was common. Yet most of her doctors seemed to believe that one day, Stella would miraculously take all calories orally, and only then would the tube be removed. I disagreed. I found research to support my gut.

This situation has become more common. Tube feeding of babies, and resulting tube dependency, has exploded. This is partly due to an increase in premature births, with babies needing more time to gain the strength and oral motor skills that typically develop during a full-term pregnancy.

Also, it’s now easier for hospitals to send parents home with tube-fed babies. The digital pumps are small and portable. But technology advances so much faster than our understanding of its human impact. 

Many babies similar to Stella, following resolution of reflux, milk protein intolerance, or whatever caused eating refusal, remain on tubes. Sometimes for years and years. I knew we had to give her a chance. We had to remove the tube, and see if she would reconnect with hunger and eat enough to thrive all on her own. 

Just after New Year’s, we took the leap. I remember Stella’s smiling, tube-free face that day. How nervous I was, but also hopeful. There was only one thing for me to do–offer the bottle when she showed hunger cues. The rest was in Stella’s hands. No more battles. 

In those first days, she did take more from the bottle. But not what a baby needs to grow and stay healthy. 

After two weeks without the tube, she hadn’t gained weight and Stella’s pediatrician leaned toward putting the tube back in. Panic coursed through my veins and, heart pounding, I told him that she needed more time. He agreed to support one more week without the tube.

Right around the three-week mark, it happened. Seemingly all at once. 

Whereas previously Stella would scream, cry, and panic at the sight of a bottle, she started to lunge and grab at the bottle. She’d even cry when it was taken away empty. Stella drank more than double the amount of formula in one day than she ever had before.

Her occupational therapist declared, “Stella has internalized the joy of eating.”

Trauma leaves a mark, but so does the experience of pushing through. After Stella’s dramatic turnaround, on those days when she ate less, I’d still worry despite knowing all babies are in fact not machines but humans whose hunger varies from day to day. Yet I also fundamentally trusted myself to handle challenges and fulfill the needs of my child. That may have been the biggest miracle of all.

The change was thanks to a baby who knew what she needed, an overwrought Christmas diaper commercial, a largely unknown blog, and fellow mothers who gifted me with understanding. 

The tube was gone. Stella wasn’t hungry anymore, and neither was I.

Not the end (just the beginning)

(Note: Remaining holiday stories can be found here as they are released each day through 12/24, and ever after.)

On my parenting journey, and “Far from the Tree.”

Posted on by amberhj

My child is strong and healthy. That said, at just four years of age, she has already taken part in occupational therapy (OT), vision therapy (VT), cranial sacral therapy, and yoga therapy (also called Integrated Movement Therapy or IMT). Her vision conditions, and early feeding aversion, have presented us with atypical challenges. Yet there is nothing “wrong” with Stella. No affliction that will define who she is. Deeply grateful for her essential wellbeing, I am always striving to provide the support she needs. An odd and awkward balancing act, at times.

I’ll admit that during her tube-fed days, while entertaining the worst possible outcome, I told myself that if she had to live her life with a feeding tube, the intervention could inform positive trajectories. I dared imagine her future as a groundbreaking artist exploring the increasingly common intersection of biology and technology. Or perhaps she could come to value food more than any average, orally eating person, and find renown as a chef who never enjoys more than a fleeting taste on the tongue but whose culinary innovations leave the ordinary far behind. These ideas seem foolishly focused on fame and success, but in my darkest postpartum, tube-feeding moments, they allowed me to envision a happy future for her wherein her difference was not just a detriment. I took comfort in knowing that the most inspiring people often have the most trying backgrounds. After a successful tube wean at just a few months old, she became an eater in short order. She is now four, and her sizable appetite won kudos this Thanksgiving from Cody’s 94-year-old grandmother. I can’t lie: I wear that compliment like a gleaming badge of honor. If Stella had needed her tube indefinitely, though, I like to think that we would’ve embraced it yet not let it dominate her identity.

I have worried about her far too much, and still do. More VT and OT are on the near horizon. Strabismus and amblyopia can affect motor skills, so the VT and OT are linked. When Stella’s eyes aren’t working together well, our world becomes less stable along with her binocular vision, and tantrums skyrocket. I question myself, my personality, my attitude, my words, my own diagnosed deficits, and then I question doctors, and PubMed.gov, and Google, to the point of black-hole depression. Instinctively, I blame myself for Stella’s every struggle. I prepare myself for the worst while researching, hoping, and double-checking in pursuit of the best.

My experience with motherhood is a soft, tropical breeze compared to the realities faced by the parents featured in Andrew Solomon‘s incredible and essential book, Far From the Tree: Parents, Children, and the Search for Identity. But then, toward the end of this gripping tome about parents of exceptional or “different” children,  he notes that a couple in London chose to screen embryos, essentially genetically engineering their child, so as to avoid the father’s severe squint. (For those with stereoscopically typical selves and kids, “squint” refers to strabismus or misaligned eyes.) This particular anecdote helped bring the entire book home for me, and felt like a sucker punch to the gut. I imagined their alternate-reality, unscreened child, much like Stella or perhaps the inspiring Stereo Sue, who would have been born cross-eyed. Surgery, glasses, and vision therapy could have corrected it, with much joy and love to be had in the meantime. Yet, strabismus was deemed too much of a burden. What an ugly and spiritually impoverished world, I thought, in which technology eliminates differences. What a waste of potential and perspective. What a horrible message to send: “We only want a ‘perfect’ child.” As if that exists! Then I think of the four eye doctor appointments we recently attended in less than two weeks, and I’d be lying if I said I didn’t wish to spare her from stingy eye drops, and double vision, and headaches, and frustration, and eye patches, and exhausting daily vision exercises. But you can’t take the squint from Stella. It’s part of who she is. To cut that out of the picture would be to paint a completely different child, the thought of which is dark, insane, and brutalizing in the light of our love for her.

Stella’s vision and the severe pain from my milk, and subsequent trauma from repeated insertion of an NG tube by ER professionals and yours truly, have likely affected her personality or personhood. We’ll never know to what degree. To assume that the impact is solely negative is a biased, ignorant, and even dangerous assumption. Among many other strengths too numerous to name here, I see a child who is an incredibly strong and increasingly eloquent self-advocate and self-starter, and who is very in tune with how she feels and what she needs. (She is the opposite of a doormat–not angry, but aware and, well, adamant!) It’s possible that these building blocks could lead her to become a defender of others’ rights and wellbeing as well.

As I marvel at Stella’s abilities and resiliency and simply enjoy mothering and being with her, I am anxious about possible gaps in development and the winding road stretched out before us. As children grow, visual demands increase. More “near work” and expectations of longer attention spans. Learning to read and write. Using scissors. Making friends and maintaining eye contact and higher level relationships with them. With bifocals and a year of vision therapy (undertaken at age two) under her belt, Stella’s visual abilities have served her well until recently. Her visual system apparently has begun to reach its coping capacity and needs help in order to support her continued development. She will benefit from an increased eyeglasses prescription, and an OT evaluation to help create a more targeted approach to vision therapy. In the meantime, I pray surgery won’t be needed and wrestle with uncertainty about whether she should go to Kindergarten next year, as vision issues flare, and her birth date just a week before the cut-off for Kindergarten acceptance.

For the sake of sanity and enjoyment, I longed to read something other than strabismus-oriented studies, optometrist’s blogs, and medical journals. But I wanted meaning and relevancy, not fluff. Far from the Tree was the answer, and led to some sleepy days for me. I read all 700+ pages almost compulsively. Filled with the stories of parents of children with Down’s Syndrome, autism, dwarfism, criminal behavior, and more, the book is sometimes harrowing but always heartening. I found it a welcome relief from typical parenting fare, which tends only to feed modern parental neuroses and our fear-driven obsession with perfection. Most of the parents featured in this book love their children with a depth they may not have achieved outside of their unexpected journey. The line between difference and disability is often blurry, and in that gray area lie gifts for those open to seeing and receiving them. The vibrancy of deaf culture and the contributions of Temple Grandin are good examples, among many, many others poignantly detailed by Solomon.

I feel differently about my role and experiences as a parent, thanks to Far from the Tree. I was affirmed by the book, and I think just about any parent would be. Current turmoil and all, I am more determined to do whatever I can for Stella’s vision, yet less destructively worried. And this mindset may fuel better decision-making. Check out this passage from page 22, which brought me to tears:

“The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies. Unfortunately, it does not save anyone’s children; it only destroys some people’s parents, who either crumble under the strain of undue censure or rush to blame themselves before anyone else has the time to accuse them.”

To Andrew Solomon, with whom, by the way, I share the dread-filled experience of waiting for the results of a baby’s head CT scan, thank you for writing this book. In regards to my daughter, I’ll inevitably worry, and wonder how much intervention is enough or too much, and blame myself at times. But as a parent, I move toward the challenges ahead with more grace, having read Far from the Tree.

Meet the brave and amazing Ava.

Posted on by amberhj

Clearly, Ava's pretty fabulous. (And she just so happens to be the #1 fan of Yo Gabba Gabba in all the world.)

I’d like to introduce you to Ava. For Ava and her family, tube feeding is a precious gift. I wanted to share her story with you all to show the other, positive side of tube feeding, and to try to help send more supporters her way. She and her mother deserve the biggest and most raucous cheering section possible.

I’ll let Ava’s mother handle the introduction. From Ava’s CaringBridge.org journal, updated regularly by her mom:

“Ava is a smiling, laughing, dancing 5 year old diagnosed with a mitochondrial disease.  She loves school and dogs, the computer, and her family, who love HER more than anything in the world.  She’s dealt with so much more than she should know, but takes it mostly in stride with an amazing attitude.”

Ava’s diagnosis came after four years of dealing with a host of serious issues and symptoms, from severe GERD to dysmotility to cardiac arrhythmia to hypotonia and on and on and on… a string of conditions that for so long had no concrete explanation. By then she’d experienced an incredible number of  invasive, life-saving procedures including placement of a G-tube in 2006, followed by a GJ the next year. Finally, a very specialized type of biopsy revealed her true diagnosis. Mitochondrial disease comes with a sweeping range of challenges. To hear the description of the condition is to be haunted by it. From umdf.org, the website of The United Mitochondrial Disease Foundation:

“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.”

Clearly, mitochondrial disease takes a vast toll, poses daunting and often heartbreaking questions, and total vigilance is required on the part of caretakers in a non-stop effort to maximize quality of life and encourage and prolong vitality and well-being. Tube feeding is one of many types of ongoing support that kids and adults with mitochondrial disease often require for survival. The type of strength and dedication and refusal to settle that Ava’s mother has demonstrated is impossible to capture in words. Ava enjoys the best possible quality of life given her condition, and tube feeding is essential to this. Look at the photos on her site and you’ll see a vibrant, adorable, happy child. And that smile! Oh my goodness. I imagine that to her mother, Ava’s wide-as-can-be grin is the sweetest reward, the best confirmation of her good efforts, the fuel that feeds her soul. Ava’s mother has continuously and tirelessly pushed for the very best options available, proactively searching out any and all treatments and therapies and support for her sweet child, and diving headfirst into the crusade for a cure through her involvement and leadership within The United Mitochondrial Disease Foundation.

This woman and her daughter are the kind of people that should be celebrated in our society. Why is it that with all the soundbites constantly buzzing at our ears and eyes, we never hear about the Avas of the world, nor their heroic mothers? Love this strong deserves a spotlight. I’m shining a little one on it, and I hope you’ll join me. Post a message of support in Ava’s guestbook–I dare you to resist that smile.

In closing, a well-chosen quote I found on Ava’s site, which seems to sum up her mother’s philosophy:

“Listen to the mustn’ts, child.  Listen to the don’ts.  Listen to the shouldn’ts, the impossibles, the won’ts.  Listen to the never haves, then listen close to me… Anything can happen, child.  Anything can be.”
— Shel Silverstein

New “tube weaning stories” page

Posted on by amberhj

Just a note to say that in this blog’s navigation I’ve replaced the “Stella’s Tube Wean” page with a more broad and helpful “Tube Weaning Stories” page. All of these children’s stories deserved to be more prominent, darn it! I plan to fill this page with links to dozens and dozens of weaning stories (with a brief note about the duration of and reason for tube feeding provided, as you’ll see), but for now you’ll find Stella, Zander, Heath, Frankie, and Diego highlighted there.

If you know of any tube weaning stories that are shared online, regardless of the weaning method or principles used, please let me know! I’d be grateful and will post the link as soon as possible.

Thank you!

More on the risks of NG tubes

Posted on by amberhj

A couple of things to share for now: A message I sent in an effort to get support for Stella’s wean, and an AAP study.

Below is the actual text of an email, including excerpts from research that I paid for, that I sent to Stella’s pediatrician and OT on January 4, 2009. The next day, they called to say that a two-week “trial” without the tube would be low risk and to go ahead with it. She never looked back and began eating large amounts at about the three-week mark. She would even have days in which she consumed 1,000 mls of 24-calorie-per-ounce formula. She was about four months old at the time, and before weaning had progressed to taking in 40-50% of her formula orally. But it was stuck there, and feeding her was still quite difficult. I simply don’t know how long tube feeding would’ve persisted otherwise. I’m thankful I was truly heard and that Stella was supported in learning to eat completely on her own.

***

Dear Tom and Robin,

Stella’s eating is regressing. The core issues seem to be reflux and difficulty swallowing. I strongly believe that the tube is worsening both of these, and that much longer use of the tube will cause more damage than benefit. Stella did not have this type of difficulty swallowing before the tube, I know that for sure. Her swallowing has gotten progressively worse over the last couple of months, during which time the tube has gone in and out many times. Her reflux is also still a problem and I strongly suspect that the tube is part of that. I found research which supports my intuition. See below. The cited papers are also attached.

*

From paper entitled, “Infants with swallowing problems” by Helen Cockerill, from Pediatrics and Child Health 18:12 (2008):

“The presence of a nasogastric tube may provide negative stimulation and impact on respiratory support for oral feeding. Long-term use has been associated with the development of later feeding aversion.”

From paper entitled, “Effects of Nasogastric Tubes on the Young, Normal Swallowing Mechanism” by Phillipa Sarah Huggins, MSc, Seppo Kalervo Tuomi, PhD and Christopher Young, MBBS, FRCS, FFRad(D)(SA), from Dysphagia 14:157–161 (1999):

“However, there are several disadvantages to nasogastric feeding, including nasal ulceration, laryngeal injury, and pharyngeal discomfort [5]. Nasogastric tubes may also precipitate gastroesophageal reflux, which can lead to aspiration [6]. Nasogastric tubes are frequently self-extubated, especially in elderly or restless patients. Reintubation is labor intensive and distressing for the patient [4].”

“Nasogastric tubes slow swallowing in young normal adults.” (My own thought on this: It seems logical that if it affects adults this way, babies would be as affected if not more so. Slowing of swallowing seems to be exactly what is happening to Stella–she is clearly uncomfortable swallowing now in many of her feeds.)

“Sensory accommodation to the tube may counteract the earlier pharyngeal response triggering seen in this study, whereas prolonged accommodation of the tube may delay triggering of the pharyngeal swallow. This may hinder recovery of normal swallowing patterns in people with swallowing impairments and increase the likelihood of aspiration.”

*

We are doing all we can to put weight on Stella to put us in a better position to go without the tube to see how she does. Are there any alternatives to the tube? Can we try cup feeding? Can we explore any other avenues (not including a G-tube which is not a route we are willing to go)? I believe that we treated her initial problems but that new problems may have arisen DUE in large part to the tube. Thank you for hearing me out and helping us resolve Stella’s feeding issue. You both have been so helpful.

I would like your honest thoughts on Stella’s progress (or lack thereof) and prognosis. We are very scared and want to know what we are up against. It’s starting to feel hopeless. We are doing out best to keep hope alive, but are desperate to seek out other ways of treating her.

Thank you,
Amber

***

This NG tube study, published in PEDIATRICS (The Official Journal of the American Academy of Pediatrics), is very telling, regarding of the distress caused by NG tubes. Some of the wording and terms used in assessing the pain are haunting: “Does Nebulized Lidocaine Reduce the Pain and Distress of Nasogastric Tube Insertion in Young Children? A Randomized, Double-Blind, Placebo-Controlled Trial.”

Taking a stand against tube-feeding crimes and negligence

Posted on by amberhj

Someone needs to say it: tube-fed children and their families are being neglected and often outright abused by a dehumanizing, misguided health “care” system.

If you don’t believe me, read on. Or at the very least, get a glimpse of a far superior alternative by viewing this tube weaning lecture delivered at Seattle Children’s Hospital by weaning expert Markus Wilken, during his visit from Germany. This video is an invaluable resource, which I highly endorse, as you’ll see at the closing of this overdue rant.

Our tube feeding days are far behind us, yet memories haunt us. Like the time I inserted Stella’s nasogatric (NG) tube into her nose, only to have it come out her mouth, instead of going down to the base of her esophagus as planned. Of waking up every two hours to feed her at night, fumbling in the dark with a stethoscope and large plastic syringe in order to confirm correct placement of the tube before setting up the pump to run for 45 minutes–desperately trying to stay awake while it ran, so as to be able to respond in the event of a pump malfunction or choking incident. The blood that, after the first month of tube feeding, consistently encrusted the tube in her tiny nostril. And, in soul-crushing fashion, the bottles of outrageously expensive Elecare, not covered by insurance, that Stella triumphantly downed on occasion, only to re-emerge in projectile fashion thanks to tube-triggered gagging.

Crazily enough, none of these incidents were the turning point for me. None of them woke me up to the immediate need for the tube’s removal. Though I did often wonder how long this would go on, as there was no plan for weaning. I was doing what I was told because it was supposedly medically and therapeutically necessary. I have another mother to thank for my awakening–a mother who didn’t see such a need and whose child paid a huge price.

Back when Stella’s little baby face was accessorized by medical tape securing a thin but lengthy yellow NG tube, we made one of many trips to Seattle Children’s Hospital. This time for an abdominal ultrasound. In the waiting room, two women struck up conversations with me about, what else, Stella’s tube. “She looks so healthy,” said one, whose child also had feeding issues and was headed toward a tube. Then she asked the inevitable question: “Why does she have a tube?” I explained, and we commiserated about the misery of trying to feed a child who simply does not want to eat. The other, with empty eyes and a tired smile for Stella, commented along the lines of, “My son had an NG tube until he was five. Good luck. She looks great. I hope you get her off of it.” Suddenly, my stomach felt as though it were full of rocks. In that moment, I sank to a very dark place. But while down there, I resolved to never, ever let that happen to Stella. I decided to fight.

So, just to make this astounding fact clear, I’ll repeat it: I met a woman whose son lived with a nasogastric feeding tube until he was five years old. Five years of a thick tube through his nose (no doubt causing nasal ulceration), his esophagus irritated, the sphincters held open (encouraging reflux), food administered on some dietian’s strict schedule and chart regardless of what he thought or felt. It’s a perfect illustration of why I’m so angry. Really, really angry. I have been for a while.

I’m outraged at the treatment that many tube-fed children and babies are receiving from doctors and therapists. G tubes, the next step after NG tubes (if eating does not progress) and a much kinder solution in cases of long-term feeding, are not without problems. They require surgery, which when not done properly can cause extreme suffering and even when correctly inserted can contribute to excessive vomiting. I believe that there are many children with G tubes that do not actually need them, and that if physically able but still unwilling to eat, they should be given a chance to wean before surgery is considered. At the very least,  thoughtful, individualized approach should be taken by an interdisciplinary team of doctors, as opposed to the reckless, disorganized decision-making that is now widespread.

Based on my experience with Stella, I’m particularly concerned about those with long-term NG tubes, tubes meant only for short-term use. It’s not okay. Scientific evidence (which I will present in a later post) and common sense tell us that NG tubes cause extreme discomfort and difficulty (slowing of) swallowing. The frequent removal and reinsertion of this tube is traumatic and damaging for child and parent. No matter what kind of tube is used, a complete disconnect with hunger and extinguishing of the desire to eat is practically inevitable. The tube itself fuels eating refusal and aversion, long after the initial issues prompting the tube’s insertion have been addressed. (This is very different from children for whom tube weaning is not an option at all and long-term tube feeding a clear life-saver.) Families are plunged into despair, their lives shrunk down by the oppression of tube feeding (though, sadly, this comes to feel normal for many families), the incessant vomiting, the stunted growth that the tube was supposed to prevent, and the hopelessness that arises due an absence of a weaning plan. Or any plan for that matter. For most of these children, there is no way out. This is, with no exaggeration, a crime.

And then there is the so-called “therapy” provided to these children. When I hear stories of children being force fed, and there are a lot of them, I literally become sick to my stomach. It’s wrong. It’s a disgrace. Yet it’s happening at leading clinics and children’s hospitals across the country. One of the barbaric techniques used: Puree is shoved aggressively into toddlers’ unwilling mouths, which are then held shut for as long as it takes. As long as it takes for them to swallow–and it can take a very long time to swallow when you are terrified of food. What horror! Stella’s occupational therapist noted that some “graduates” of such programs later have to be desensitized after enduring such trauma, the process of learning to enjoy rather than fear food begins again but on even shakier ground. How can a brute-force approach possibly help a scared child discover the joy of eating? It can’t. If the child does eat, it’s not because they want to. It’s because they have no choice and no other way to make the torment stop. The children are sometimes called “obstinate” by therapists and parents who buy into the crazy, unbelievably misguided belief that kids are refusing to eat because they are, essentially, being manipulative little jerks. The children are blamed, their trauma and autonomy completely disregarded. Parents are pitted against children, forced to play coercive games. This is absolute insanity.

There are far better ways to wean children from tubes, to awaken their appetites, hearts, and minds. These methods are infinitely more effective and humane. They are based on respect and compassion, which every child needs and deserves! Beyond that, every child for whom it is safe (mainly, the many tube-fed kids whose initial issues are resolved) deserves to be given a chance to eat. For many families, weaning is never even discussed! Because the child is not eating orally. But why would they? Why would they suddenly enjoy eating when every three hours, formula is pumped directly into their stomach, sometimes only to come back up again due to nausea and rampant overfeeding? When Stella had her tube, our pediatrician said she’d just “turn it around.” As if by magic. That was never, ever going to happen.

I’ve been perusing blogs and boards of parents with tube-fed children and my goal has been to offer support whenever I think my experience with Stella could be relevant. It feels good to provide support and resources, to help bring about positive change based on such a negative experience. But I’m not sure I can do it anymore. There are too many heartbreaking stories of renowned hospitals directing parents to disregard their instincts and squash the dignity of their child. It’s overwhelming. I’ll start to type a reply to certain posts, ones that reveal that a child is being forced to eat in some fashion, only to delete it, because my thoughts are all over the place. My words too angry.  I wonder where to begin. How can I convince someone that the entire medical establishment is harming their child on a root level, rather than helping? There is too much ground to cover, too much fundamental education and changing of minds to do–more than can be conveyed in a comment box. I’m at a loss.

I have such compassion for the parents, yet feel such angst when I see the failure to question the clearly ineffective and detrimental status quo. You have to stand up for your child. No one else will. You have to call bullshit on doctors’ cavalier attitudes toward tube feeding, not to mention their lack of actual knowledge on the subject. You have to challenge therapists whose tactics perpetuate the feeding battle, rather than bringing it to a peaceful end.

But I know. I know these parents are ground down by the stress, loneliness, and sorrow that comes with not being able to nourish your own child—the nightmare that is tube feeding. I know from my own experience that some parents become so desperate that they no longer trust themselves and find themselves willing to follow whatever directions they’re given, perpetuating their own hell, despite the nagging voice inside that tells them it’s all wrong. Or who are tossed back and forth from one expert “opinion” to another, with no one ever offering a real plan for moving towards normalcy and health. Parents are victims of unnecessarily extended tube feeding as well, and the failure to recognize the deep trauma of both parent and child, and how it contributes to disordered feeding, is another gaping hole in the “care” received.

I have by now heard about, and even helped in some small way through this blog to bring about, dozens of successful tube weans. I know some children require tubes for survival. But many others are simply trapped with no visible exit. In particular, I am intimately familiar with three tube weaning success stories: that of my daughter Stella, and those of Zander and Heath, the children of women who have become dear friends. These amazing triumphs were achieved thanks to parental intuition, constant and fearless questioning, and plain old ignoring of bad medical advice, plus exhaustive research and the shaken but intact inner belief that if given a chance, “my child can eat.” These weans required a lot of belief and trust in the child, not the doctors. They required a process of “letting go.” This is hard to do, not only for parents, but for a broken health care system that insists on monitoring and controlling every milliliter pumped through the tube, in order to cover its ass, all while ignoring the impact on quality of life.

Thankfully, there is an alternative, explored in the video below. Upon viewing it, I cried. They weren’t happy tears in response to the wonderful, validating, rare, evidence-based wisdom on tube weaning that the video unveils. I bawled because the speaker, a child psychologist and tube weaning expert from Germany, describes a higher, enlightened quality of care given to children in his country—a standard and mentality that simply does not exist here. Unexpectedly, I was overwhelmed with grief. By and large, Stella did not receive the respectful, mindful, effective and individual care that she deserved. And thousands of children are needlessly suffering right now.

If you’re angry too, looking for a way out of tube feeding, or want to follow your desire to treat your child with more compassion during their feeding journey, please grab a cup of coffee and watch this eye-opening, heartening lecture given by child psychologist Markus Wilken. He has past, direct experience with the Graz method, which he’s incorporated into ongoing weaning and tube management work in hospitals and clinics in Germany. Astoundingly, Markus has successfully weaned a diverse set of over 400 children. Perhaps, within his presentation, you’ll find the encouragement you need to believe in yourself and your child. To live a tube-free life! You can do it. Your child can do it. It’s time to fight.

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Here’s the link (some find that removing the “mms” prefix is necessary for successful viewing):

mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv

Meet fearless Frankie and her parents

Posted on by amberhj

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.

Stella Enters Single Digits

Posted on by amberhj

Stella turned one on Monday. I should probably say something really profound and eloquent and heartfelt but all I keep thinking to myself is “HOLY SHITBALLS!” Over and over and over.

The birthday girl.

The birthday girl.

Okay, I’ll say that after 12 mind-blowing months, it feels like heaven to see her thriving, running, throwing, walking, laughing, smiling, waving, chowing, bye-bye-ing and doing everything she is “supposed to” and more, especially after all we went through with her feeding issues and the entity referred to as The Tube. Perhaps I appreciate this milestone more–who knows, maybe a lot more–than I otherwise would have. There were days when I didn’t know if she’d grow again. I couldn’t see a way out for us–no light at the end of the tunnel. In fact, it wasn’t a tunnel. It was a deep hole and we were stuck in what seemed like mud but it was too dark to really know. There were nights when terror had me by the throat and I literally had trouble breathing because I loved her so much and that feeding tube was hell and totally unacceptable and the tyrannical, suffocating thought, “WHY WON’T SHE JUST EAT?” robbed me of my own appetite and mental stability (what little I had to begin with). The really sad part, I suppose, is that I know there were stretches of time during which worry over her unwillingness to eat, and knowledge of the pain she was in initially, and the resulting lack of weight gain robbed me of much of the enjoyment of some her early little triumphs–the ones that are actually incredibly huge–and anxiety sometimes prevented me from savoring that fleeting, precious time in her life. That’s what gets to me as I look back.

But now, here we are at one year old. We made it! We kicked some ass. Holy crap. We moved MOUNTAINS, we hit the three-pointer at the buzzer, we saved the world! (Our little corner of it, anyway.) I could not be more proud of her. And you know what? I’m proud of me too. I love where we are now. She is such a happy and active child and so strong and vibrant and resilient. She glows! Everyone sees it. I am tempted to quote Jack Nicholsen here, which seems inappropriate and perfect: “You make me want to be a better man.” Because she has inspired me to let go of what doesn’t matter and to cherish what does. Heck, if she is this awesome (and she really, really is–like when she spots her Cookie Monster doll across the room and lowers her voice several octaves and talks in scruffy baby talk all the way over to him), I must be pretty great. So, to be better, I don’t really have to do much at all, except be kinder and gentler toward myself. That’s the example I want to set for Stella.

Just after proving that guacamole has a calming effect.

Just after proving that guacamole has a calming effect.

We threw a very small, delightful and heartfelt party on Sunday (yes, it’s true, a party can be heartfelt). My parents were visiting from Boston, which made it all the more fun. I think we were all shocked when Stella refused to eat her cupcake. Wouldn’t even touch it. We got her to lick the candle, an attempt to help her enjoy some of the Trophy Cupcake frosting magic, but it must’ve been too sweet for her, because she reacted as if she’d been force-fed a heaping dollop of Vegemite. (I reacted the same way, when, during a soiree I attended amid my study abroad experience in Melbourne, I loaded up a cracker with what I thought was Nutella. Let’s just say that I’ve never been more wrong about anything in my life.) Total disgust. However, she eagerly ate my mom’s super fantastic guacamole, and had some flaky crust from one of the three types of quiche (crab, broccoli, and bacon-loaded Lorraine–all were superb).

She looked as adorable as ever, but, not at all used to wearing a floofy dress, she tried to undress herself constantly. Also not accustomed to so many people (and all were adults save for one toddler) crammed into our small abode, she got a bit clingy. I have to say I enjoyed that, because she’s usually far too busy sprinting around or doing headstands on the coffee table (trying to, anyway) to be held. Oh my, she WAILED when we sang “Happy Birthday.” It was funny, and got a big laugh (which probably didn’t help matters!) but I really felt for her. Actually, I set her up. I know full well that when you sing to her on your own, she’ll not only be mesmerized, but she’ll often sing along, or more likely try to one up you with her angelic singing voice when you’re done. But don’t you DARE sing with anyone else! Not even one other person! It is absolutely *terrifying* to this otherwise fearless girl. Cody and I learned this a few months ago. I was singing some old Cookie Monster song (that Cody taught me) while feeding Stella, when Cody chimed in. She looked at me with an expression of total horror, then looked at Cody, and back at me. And then, the tears and hysterics began. Sometimes we forget about this and absentmindedly join in if the other is singing and holy cow does our self esteem take a hit when she gives us the biggest and most terrified thumbs down you can imagine.

Cody made a bound hardcover photo album recapping Stella’s first year of life, as a surprise for me. It arrived yesterday, and it’s fabulous. I just love it. (Thank you very much, Cody!) Somewhere toward the middle, there’s a photograph from Christmas day. She’s on her tummy, wearing her green candy cane (striped) PJ’s, with her fists restly cutely under her chin. Her expression is priceless. She is clearly thrilled and her grin could not be any wider, but there is an undeniably devilish glint to her smile. She’s up to something. The tube is there with its horrible, all-too-temporary tape job, but at first, I didn’t even see it. All I saw was her beautiful face. And as I realized this, I was struck with how far we’ve come.

Stella, happy, happy birthday! You are a wonder to behold. We feel so lucky, so incredibly thankful to have you in our lives. I love you so much I would stand on my head all day long just to prove it to you, or even eat a whole tub of Vegemite. May your second year be as triumphant as your first, and even more joyful! We can’t wait to see what you do next.

Support and community for parents of tube-fed children

Posted on by amberhj

Trying to wean your child off of a tube? Bravo! You’ll find comfort, resources, and encouragement in this online support group:

Tube Fed Children Deserve to Eat

It’s a social network powered by Ning Grouply, with the purpose of “Connecting Parents of Children with Tube Feeding Issues.”  There you will find a wealth of information and wonderful people who are all going through (or have been through) your stressful situation!

Best of luck to you!

The truth about moms

Posted on by amberhj

On message boards across the web you can find, far too easily, cringe-inducing posts by moms skewering each other’s parenting styles and choices–battles over breastfeeding versus formula-feeding and catfights about co-sleeping and cribs, and that’s just the tip of the judgemental iceberg. This sad reality is partly why, even though it was necessary to ensure Stella’s wellbeing, the switch to hypoallergenic formula was so difficult.

I’ve thought a lot about all the guilt and shaming and I think that what it really boils down to is that today, there is no one clear way to raise a child. Somehow, with a constant flood of opinions, experts, and information, there are more questions than answers. Nothing is clear cut. We’re all so worried about making the “right choices” for our children that we cling tightly to our way of doing things, and they come to define us. It’s as if we are trying to convince ourselves, not just others, of their correctness. Defensiveness and insecurity can be the only explanation.

However. What I’ve learned through my experiences with this blog is that none of that matters. Not one bit. I’ve heard from mothers across the country and around the world–moms in Singapore, New Zealand, Ireland and Texas whose babies refuse to eat. We all do the same desperate things, ask the same questions, and think the same thoughts. Our feelings, stories and longings are not just similar, but identical. The fact that some of our babies enjoy breastmilk and some formula, and that some sleep nestled under our arms while others are tucked into lovingly adorned cribs, makes no difference whatsoever. These women span a diverse range of nationalities, but you’d never know it.

As I think about Hatice, Rocio, Erin and all of other moms who’ve contacted me, I am overcome with emotion. Not just because I’ve been where they are and know how gut-wrenching their struggles are. Not just because I know how terrifying it is to insert an NG tube, how the tape turns their scrumptious little cheek into a red, raw mess that seems to symbolize disfunction, and how an aversion comes to suffocate every other aspect of life. No. Really, my heart aches and expands when I think about them because they love their babies so very, very much–literally to the point of madness, sometimes. They would do anything at all, gladly handing over their own wellbeing and comfort, to ensure that their babies are happy and healthy. It’s that simple.

The truth about moms is that we are all incredibly alike, when it comes to what actually matters.

Me and Stella, all cozy and matchy matchy.

Me and Stella, all cozy and matchy matchy.