feeding issue

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

Hooray for Heath, his mom, and inspiring tube weaning success!

Posted on by amberhj

Mighty Heath

Meet Heath. Ain't he sweet?

Remember Zander? Well he’s got company. (The tube-free ranks are growing.)

Sadly, I kept putting off this post because the hugeness of the triumph deserves a truly well written, heartfelt description. Which takes time and energy that I’ve been lacking, though I’ve so wanted to muster it! But then I realized that I can’t tell the story any better than Jenny, Heath’s mom, an incredible writer and an amazingly intelligent and unstoppable mother. So I’m just going to give you the highlights and point you toward the blog that documents Heath’s journey: The Crunchy and the Smooth.

Heath is 15 months old and was 100% tube fed until a couple weeks ago. The need for his g-tube (gastrostomy button) was prompted by his difficult birth and the immediate, medically intense aftermath. The fly-by overview, in Jenny’s words: “cord wrapped tight around his neck, Apgars of 0, ambulance transport from a country mouse hospital to a city mouse NICU, diagnosis: hypoxic brain injury.” As the result of many necessary and lifesaving but overwhelming and traumatizing medical procedures that took place in the area of his nose and mouth (mainly intubation and suctioning), Heath developed Posttraumatic Feeding Syndrome. Until recently, to defend himself from further invasions, he batted away any food presented to him. He was scared, and who could blame him? The answer, his parents realized, was to build trust, apply no pressure, and to let him feel hunger and interact with food on his own terms (play picnics, for example).

I want to pause here and clarify, because “brain injury” is vague and doesn’t paint an accurate picture of Heath. While motor areas of Heath’s brain suffered injury during his birth, Jenny explained to me that his brain is repairing itself thanks to the amazing processes enabled by infant neuroplasticity. The ongoing repairs are evident, as I’ve noticed leaps in his development in the short time I’ve known Heath.  Anyone who lays eyes on him can see that he is thriving in every way. He  is one of the happiest, sweetest, most engaged and engaging babies I’ve ever met. He’s got a sense of humor. He communicates and makes friends easily. His weight is great. He’s meeting developmental milestones a little later than most, but he’s getting there–at his own happy pace (just like all babies, really). Of course, his mother has sought out various ways to support him in his physical development, including occupational therapy, movement sessions and even yoga–and he’s way better than me, seriously.

After much research, various forms of therapy, eye-opening revelations, and inspiration from the Graz model, an intensive wean was planned. The journey began on May 9th, with hands-on support from Dr. Markus Wilken, a psychologist with specialized expertise on feeding adversity. He came to the U.S. to help wean Heath as well as two other tube-fed children, who began eating faster than anyone expected! (You can read about Kai and Rosie’s simultaneous weaning successes at The Crunchy and the Smooth, as well.) Over his career, Wilken has helped wean more than 400 children from their feeding tubes.  He leads the tube weaning program at Princess Margaret Hospital in Darmstadt, Germany and together with Martina Jotzo runs The Institute for Psychology and Psychosomatics of Early Childhood.

Jenny’s blog has all the weaning specifics, but I’ll say that it’s been quite a ride (as in nauseating ups and downs) for Heath and his parents, as most weans are. But, with no doubt, the weaning effort has been successful. The progress Heath has made is staggering. In short, and I am in complete awe though I never doubted he could do it, Heath has become an EATER. He is enjoying a diverse array of foods, with more and more being added to the menu each day. I’m smiling because Heath’s life is forever changed. And because any parent of a tube-fed child who reads this will experience the sensation of their heart doing a back flip within their chest. Brave Heath is going to help so many babies and kids escape from the limitations, pain and decreased quality of life (for the whole family) that comes from extended tube feeding–not just the physical and psychological effects of the tube itself but from the anxiety and helplessness of tube feeding with no end in sight, when your child has (often after much hard work, therapy, recovery) the ability but not the willingness to eat. The parents who stare into a proverbial black hole whenever they ask doctors or wonder to themselves about whether their child will ever be able to eat–they will discover hope in Heath.

To say that Heath’s mom deserves credit is such a vast understatement. The roller coaster ride she (and her wonderful husband) have been on since his birth, when Heath literally had to be brought back to life and the 35 terrifying days in the NICU that followed, is a testament to not only her strength, but her inestimable love and grace. I know why Heath smiles so much.

Practically speaking, this very smart woman is an accomplished journalist. You can tell by the quality of her writing–and the research and outreach to experts across the globe that she executed in her quest to empower Heath with the gift of autonomy and the joy of eating. So, parents of tube-fed children, please check out her Resources Page to hit the jackpot in terms of insights and data and all kinds of valuable, rare informational gems on the topics of tube weaning, tube feeding and associated trauma.

To everyone reading this… I hope you’ll go to The Crunchy and the Smooth and post a few cheerful and supportive words in the comments section. Heath has come a long, long way, but there is still patience and perseverance required by this family as they follow Heath’s lead and adjust to a whole new paradigm.

To Heath, Jenny and the man known as “Peanut”…  big love, loud applause and quiet, awestruck respect from me, Stella and Cody. Enjoy every lick, bite and gulp! (We know you will.)

Three cheers for Zander! Oh yeah, AND HIS MOM.

Posted on by amberhj

Today isn’t just another Tuesday. It’s a very important day. Today, February 9, 2010, is the day Alexander (Zander or Zandy to those who love him) left his G tube behind. For good! I can’t tell you how huge this is.

Due to one of the most severe cases of frank aspiration ever seen at Seattle Children’s Hospital, Zander required a feeding tube for a year and a half (very close to his entire life). Early on, it was discovered that most of the milk he swallowed ended up in his lungs. He started off with an ND tube (like an NG tube that goes further down, indicated only for short-term tube feeding), but it soon became clear that a longer-term J-G tube was needed. At that point, he couldn’t handle a G tube, inserted into the stomach, because food that high up in his system could be regurgitated and cause aspiration. The food had to go directly into his intestines, via G-J tube, to avoid the threat to his lungs. (Much later, though, he transitioned to a G tube.)

Any type of swallowing put sweet Zander in danger. When he got a mere cold, respiratory distress was pretty much inevitable. It was a terrifying journey for the whole family, with a most uncertain destination. They didn’t know where it would lead. They were stuck, in so many ways. Tube feeding has a way of cramping one’s mobility and social life and sanity.

Then it happened. Late last summer, Zander passed a swallow test. Finally. It was his fifth one. He’d failed the four prior, because he was still aspirating. Amazingly, he at last demonstrated the ability to swallow. But could he really EAT? Did he have the willingness? Not at first. He needed to build oral motor skills. He needed to learn to not be afraid of food. He needed to feel hunger, which tube feeding obscures or annihilates. He still had a road ahead of him. So they forged ahead. Unbelievably, there were just two occupational therapy sessions. The work was done at home. They made food “sexy,” conscious of being happy when they ate and letting Zander see them happily eating. They allowed him to touch, and — until he got teeth — gum at flavorful food. They dipped his pacifier into gravy, sauces and juice. Still uncertain, they were hopeful and proactive, even after all they’d been through.

Slowly but surely, Zander began to eat. At first, just a sip from a straw or a bite of a cracker. Breakthroughs seemed to happen when they were behind schedule, when hours had passed since his last tube-fed meal and he was overdue for his next one. On such an occasion, he grabbed his mother’s Jamba Juice and guzzled three ounces in what seemed like mere seconds. Confidence and ability grew in tandem. The percentage of his diet enjoyed orally grew ever so slightly over time, until it hovered at 50%. (That’s as far as Stella ever got, by the way.) That’s when Alexander’s mother, based on research and gut feelings and a few supportive voices, took an incredibly brave but wise leap of faith. She just stopped. She stopped using the tube, and let Zander take flight.

Thirty days later, that would be today, Zander had a check-up with his wonderfully thoughtful, appropriately cautious, yet totally reasonable pediatrician. She saw that since commencement of weaning, he’d gained a bit of weight, and grown taller. She looked at him and saw a happy, healthy, NORMAL boy. And she said that the tube could go. Zander’s mom removed it this afternoon. She still feels a bit dizzy. Makes sense, though. Her world is  spinning, in the best possible way.

Yes, I’ve met Zander’s mom and I liked her instantly. She’s got wisdom and laughter in her eyes. Yep. A killer sense of humor, and a shrewdness that could put any seasoned lawyer to shame. So, as big a day as this is for Zander, I find myself just as happy, if not more so, for her. She got him here. Her strength. Her determination. Her unwillingness to settle. Her ability to take a hit and get back up, in the face of anxiety. Oh, the anxiety. She didn’t let it stop her, and that’s something a lot of parents could learn from these days.

She’s been to hell and back, probably saved her kid’s life more times than she can count, yet she’s got enough energy left to fight for other little ones like Zander. She’s become their much-needed advocate. She’s already inspiring others, and pushing for change. Better care is needed for kids on tubes, a technology that is outpacing our understanding of its impact on children and their development. And, as she and I both learned, there is no end in sight. Kids and babies whose core issues are resolved remain tube-fed for years, because no one knows how to wean them. So few in the medical community are brave enough to at least give them a chance to eat on their own. Well, she’s stepping up to the plate.  But that’s just business as usual for her. I’m going to support her however I can.

Zander now has two “belly buttons”, the last evidence of his medical journey. It’s a new, tube-free world for this family. A time of joy and nervous transition to an alien concept called “normality.”

The next time your child savors mac and cheese, or any favorite food, take a minute to appreciate it. And raise your glass–hold it extra high–for Zander and his mom!

(Much respect.)

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.

Goodbye, breastfeeding guilt.

Posted on by amberhj

I destroyed the structural integrity of my boobs–what little there was–with an expensive, rented hospital grade breast pump in order to collect 500 ounces of milk that Stella would never drink. It sucked in every way.

Worse was the guilt and anxiety. None of it made any sense, but thankfully, it’s over. I was not able to breastfeed Stella past 11 and a half weeks and I am officially 100% okay with that. I feel a new sense of freedom and confidence. I really, really do. This can only be very good for me and Stella.

In an attempt to completely resolve any lingering bad feelings, I’ve been reading a blog called The Fearless Formula Feeder, where I found a link to this article in The Times. Against a backdrop of breastfeeding mania, this article is explosive. This exploration of the data (or lack thereof) behind breastfeeding’s benefits seems more comprehensive and credible and less emotive and debatable than Hanna Rosin’s notorious Atlantic article,  “The Case Against Breastfeeding”, which I also greatly appreciated. The bottom line is that it’s just not that big a deal. Breastfeeding is wonderful for some women and their babies, but its benefits have been greatly and widely overstated. Guilt and judgment toward formula-feeding moms has been unfair, out of control, and as it turns out, baseless.

I overthink things. So naturally, instead of letting go, I’d been doing a bit of research that helped chip away at my disappointment and breastmilk’s holy image. When you look closely at the actual studies, the mirage disappears almost completely. Of course there are some benefits to breastfeeding but they appear to be relatively small.  Furthermore, while there’s no way to know for sure, most of the benefits shown are likely due to the fact that breastfeeding moms are a self-selected population and are simply “the kind of moms” who tend to be more educated in general and in regards to childcare, more responsible, interested and engaged as a whole, and more financially ABLE to give their kids “the best” in many areas. It’s difficult if not impossible for studies to account for this.

The media tends to jump on any studies that suggest potential breastfeeding benefits, while completely ignoring the many, many studies that show no difference between breastfed and formula fed babies. Science has not been able to back up the “breastmilk as miracle cure” message. The main advantage of breastfeeding, in my experience, is that you don’t have to deal with the hassle of preparing and cleaning bottles, and you avoid the cost of formula. On the other hand, if you are frustrated with a feeding or parenthood in general, plastic bottles are great for throwing across the room–a major plus that can’t be overlooked. Ahem.

Like Rosin and the author of the Times article, the Fearless Formula Feeder is by no means anti-breastfeeding. She simply wants to defend formula feeders, and cleverly calls herself a “factivist.” It’s interesting to now look back and think about the “facts” I received about breastfeeding from all kinds of people and sources. I remember hearing in childcare and childbirth classes, in broad terms, that “breast was best.” This message is also plastered on every can of formula (thanks for rubbing it in, by the way). I was told that breastfed babies are smarter and healthier, and have better bonds with their mothers. More specifically, I heard that breastfed babies have fewer incidences of diarrhea and ear infections.

At the end of the day, I know my child better than any study. Here’s what I’ve experienced: Stella’s brilliant, ahead of the curve in every area. We share an incredibly close bond. She’s 14 months old and has never had an ear infection. And, drum roll, please… her eight-week bout of diarrhea STOPPED with her first bottle of formula. Just sayin’.

At this point, my only regret is that I didn’t stop breastfeeding sooner, so as to more quickly relieve her pain, prevent her feeding aversion, and end our stress and suffering. I was not able to stop until all hell broke loose and Stella wound up with a feeding tube. Why? Because of all the “facts” I heard about breastfeeding. It simply wasn’t possible that we could fail at breastfeeding, because breastfeeding is perfect and miraculous. I contacted a La Leche League leader and the very rude Jack Newman and several other breastfeeding experts over the phone or via email, and these well-known experts’ conclusion was that I must be doing something wrong. One supposedly all-knowing Ph.D. / IBCLC, after hearing the horrors of our situation, suggested, “Hold her more securely–don’t let her feet dangle. Babies need to feel secure.” If I could have punched her through the phone, I would have. Other high-profile experts said the problem was latch and that at Stella’s advanced age (10 weeks), it was too late to fix. This was stated with disapproval and disappointment, because clearly I hadn’t enforced proper latch. I cut out dairy and soy and tried even the dumbest suggestions. This led to a lot of crying and failure and desperation. To all that, I can now officially say, “BULLSHIT.”

I must  note that thankfully, at that difficult point in our lives, not all voices of authority shared an insane breastfeed-at-all-costs mentality. A renowned lactation consultant and a wonderful pediatrician helped me make the decision to stop breastfeeding. They said I may want to consider formula-feeding and that it would be okay. That breastfeeding’s toll was clearly too high, and that it simply wasn’t the be-all-end-all of child health. I didn’t believe them at first. But eventually, I was able to do what was best for us. I will always be grateful to them for being so sane, for being a voice of reason and compassion not just for Stella but for me, too. Thank you, thank you, thank you.

What would my mom and Kevin Garnett do?

Posted on by amberhj

I remember one day, having been home from college for a brief stint, my mother, who is a pretty wonderful kick-ass character, sensed that I was not doing so well. She drove me back to school, and as I reluctantly got out of the car, she suddenly put her hand on my arm and said, very seriously, “Don’t take crap from anybody.” I smiled all the way back to my dorm.

It looks as though I won’t need to give Stella this important lesson. Not any time soon, at least.

This is the child who decided she’d really rather not eat. At all. With each vehement refusal, I came to see just who I was dealing with. “No, thank you, mother. I’ve decided that eating is not in my best interest. Take your boob and shove it. The bottle can kiss my ass. Back off!” She was trying to tell me something and found a very effective way to get her message across. She would not back down. However frustrated and desperate I became, I respected her immensely.

She is a good eater and a toddler now. And she is starting to throw tantrums. Real tantrums. Formidable fits. She tosses herself with abandon. Cody calls them “trust falls,” and they’re not always done in times of anger or frustration, but she will throw her entire body on the ground, apparently expecting you to catch her, no matter where you happen to be at that moment. She will scream as if being physically attacked in the event that–God forbid–you don’t hand her that snack, piece of trash, or whatever it is that she wants immediately.

Frustration pose: Exhibit A

Rare photograph of Stella's frustration pose

For months, Stella would occasionally strike a very alarming pose. She balled up her fists tightly, stuck her arms straight out, made “crazy eyes” and clenched her jaw with all her might. This would last just for a couple of seconds, and then pass, leaving us bemused and mildly disturbed–she was obviously upset but we had no idea why. Many other parents had not witnessed such behavior in their babies. I now know that she did this because she wanted something but had absolutely no way of communicating to us the object of her desire. Stella has always known what she wants (and doesn’t want). This expression decreased in frequency when she began to point, a development that I savored because she would actually point to food she wanted to eat. It made me cry. I was so happy.

Anyway, last week, we went to the park. She would not let go of her beloved Snack Trap, so I let her walk around the playground with it. Now, my gut told me that this was a bad idea. She could fall and she might wind up with the handle in her eye. It might distract her and she may be more likely to run into something or someone. Or, it could set off World War III. Which it did.

A very friendly, smiley young lady, who had to be around 18 months of age, sauntered up to Stella in, as you’d expect, a very friendly, smiley fashion. She then gently, and I mean gently, reached for Stella’s snack trap. Stella took a step back. The girl then lunged for the goods, managing to stick a couple fingers into the cup’s opening–and as she did so, Stella yelled, clearly agitated. But she stayed put. The girl’s father and I tensed up slightly and moved closer to them, not sure how exactly to handle this but realizing that diplomatic intervention would likely be required.

He said something like, “That’s not yours, sweetie. You can’t take other people’s snacks.” She ignored that wise counsel, as warring factions often do, lured by the catnip-for-toddlers appeal of the Snack Trap, and lunged again. This time, Stella actually stepped toward the girl, and held her off with her free hand while screaming and violently waving the cup high over her head. It was so intense! And actually, rather impressive. It reminded me of basketball. A street game. And Stella was somehow a center, about to dunk on this girl’s head and then do something like this. The girl’s father smiled and said, “There  you go!” as if pleased that Stella had taken such decisive action.

This stand-off highlights for me that gray area that new parents struggle with. Should I have encouraged Stella to share? Stella is good at sharing. She spends most of her day handing things to people. But do I want other kids’ hands in her food? And aren’t we supposed to teach boundaries? These questions became more urgent a few days later, when a kiss-happy boy planted several smooches on Stella. The incident escalated to the point where his mouth was over Stella’s nose, and left it covered in saliva. Yeah. All I could think/say the whole time (nervously, with the pitch inching ever higher) was , “Um… um… um… um…” Stella didn’t react. At all. But I was sorta horrified. I expected the parent to reign the kid in, but that never happened. I understand not wanting to discourage such loving behavior, but isn’t there a limit?

This happens a lot. I guess it’s just part of being a toddler and enjoying that brief time in your life when you can walk up to total strangers and tongue them, rob them, share their food–all without saying a word, and it’s pretty much business as usual. Not cause for imprisonment or restraining orders.  We were at Seattle Children’s Hospital recently, waiting for Stella’s foll0w-up renal ultrasound a few weeks ago (it came back looking good, by the way–really more of a formality than anything). She was enjoying a snack in her stroller when a happy little boy came up and put his hands on Stella’s face. I wasn’t sure what to do. Oh they fool you with their glowing sweet faces and then BAM! Germ attack! I waited for his mother–standing right behind him–to intervene, but she did not. The kid then put his hand in Stella’s mouth, his fingers covered in her chewed up cracker. His mother did not do a thing. Again, we were at Children’s Hospital, a place were germs loom like deformed monsters! I did my best to brush it off because that mom looked like a depressed zombie. She was there for a reason… and it may’ve been a devastating one. I cut her some slack. What else was I going to do?

These days, Stella seems to know exactly where to draw the line, but I’m often not so sure. I want to heed my mother’s advice. I don’t want to permit misbehavior on Stella’s part, but she is too little to understand real discipline. I also don’t want either of us to take “crap” from anybody, but I don’t want to stifle Stella or instill mistrust and fear. I certainly don’t want my anxiety to rub off on her. It’s a balancing act. Balance isn’t exactly my strong suit but I’m working on it.

The next time Stella throws herself on the ground, I can, at the very least, admire her n0-holds-barred decisiveness. Her Kevin-Garnett-like intensity. It’s interesting. On the court, I was a guard, but it looks like Stella is more comfortable in the paint. Have I mentioned that she is now in the 90th percentile for height? I know, I know! Stop getting my hopes up about basketball! Tutus are ahead! Princesses, pixies and fairies. Oh my god–and pink fairy princesses in tutus sprinkling purple glitter pixie dust!

All I know for sure is that she’s got guts, that kid. And I love her all the more for it.

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.