ng tube weaning success

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.)

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!

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.

********************

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

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.)

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!

Well nourished

Posted on by amberhj

Super Stella can eat a pancake in a single bite (practically).

Super Stella can eat a pancake in a single bite (practically).

Sometimes I worry (shocking, I know) that Stella and I don’t venture out often enough for grand adventures. You know, to the Woodland Park Zoo or Pike Place Market. But then I turn on the vacuum or open the refrigerator door, and she goes absolutely bonkers with joy and excitement, and suddenly I’m certain in the knowledge that she gets her share of thrills right here at home.

The fridge is by far her favorite destination at the moment. She’s developed a particular fondness for a large bottle of light dijon dressing. If there happens to be some Cava chilling in there (which is often the case), she’ll  make a beeline right toward it, and I’ll smile and think to myself that we are incredibly alike.

Food and drink remain a big focus of our days. But a shift is underway–a very healthy shift in thinking and eating. Stella is eating plenty of food via bottle, spoon and finger. I think–I really, really think–that she has finally convinced us to chill the F out. Really. This is big, and it’s about time. I mean, on how many occasions has she rebounded from eating “less than usual” to eating “more than usual”? Tons. How many bottles has she drained? Countless. How many Cheerios and pieces of tofu has she stuffed in her mouth? So many that her grocery bill is starting to rival mine and that is really saying something, people.

I purchased a horribly edited but very helpful and well intentioned book called Super Baby Food by Ruth Yaron. The purple tome has helped me change Stella’s diet for the better (and by “better” I mean healthier and fresher). The book is frustrating on one hand, because it confusingly cross-references itself to the point of eye-crossing ,book-hurling annoyance, but it’s also empowering in that, by patiently plugging through key parts of the book, I’ve established a real plan for giving Stella a complete, incredibly nutritious, age-appropriate diet. Until recently, I really felt like I was just winging it. I had the feeling I could do better. Also, Stella has enjoyed three nasty colds in as many months, so I’d been wondering if there was a way to boost her immunity, even just a little bit, through her diet.

In a nutshell, the book encourages you to make baby food yourself, using lots of “super foods”–not just fresh fruits, vegetables, grains and legumes, but with those that are especially jam-packed with nutrients. At the heart of Super Baby Food is Super Porridge, which should constitute the baby’s biggest and most hearty meal of the day. You make it by throwing grains into a blender (I’ve been using brown rice and millet this week), then cooking them in water. You make a few servings at a time and put them in individual containers in the fridge. Come meal time, you take out a serving of Super Porridge and add stuff to it. In ice cube trays, I’ve frozen portions of pureed fresh vegatables and fruits of the “super” variety (including kale and papaya). So I pop one or two of these veggie/fruit cubes in the porridge and microwave briefly, and mix it up with a bit of flaxseed oil and brewer’s (nutritional) yeast. Every other day, I add an egg yolk to the porridge, per the book’s suggestion. On Sunday, I hardboiled four eggs and put them in a sealed container in the fridge. I eat the egg white as I mash the yolk before dumping it into Stella’s porridge. And the shocking thing is, she likes it. She really really likes this porridge stuff. Her favorite seems to be Super Porridge with a cube of mashed avocado, a cube of mashed papaya and an egg yolk (the flax and yeast are givens). I make an effort to prepare the porridge in a way that is appetizing. I’m not down with making her food that is nutritious but unappealing–what fun is that?

According to the book, yogurt has enormous health benefits (big revelation there, right?) and should be the base of one meal per day. I haven’t full-on incorporated this into our routine yet, because Stella is not supposed to have dairy until one year of age. However, I do stir some rice yogurt into her morning fruit meal, and I plan to grab some soy yogurt at the grocery store. I’ll probably do my bowels a favor (I owe them one after months of Pagliacci Pizza, RoRo’s BBQ and Mighty O donut dependence) and stock up on some Greek yogurt for myself.

Super Porridge may sound a little crazy and, well, it is–when you compare it to our old mode of using Earth’s Best jarred baby food and cereal (which I still use here and there as I am not going to become militant about what Stella eats and want her to enjoy a wide variety of foods). Super Baby Food isn’t exactly “simple.” But the level of effort wasn’t too excruciating this first week. I get the sense that in another week or two, I’ll be in the flow of it, making only small batches here and there. I expect this plan to become a habit that doesn’t require the current level of thinking and deciphering. Besides, I feel so good about feeding Stella this way. I love knowing that even on days when Stella doesn’t eat much, each bite she takes is off-the-charts nourishing. At times I still want to chuck the book out a window because it’s such a convoluted read, but I am really grateful for the hearty bits of wisdom nestled within pages full of rampant bolding and italics, near-criminal use of indentation, and random tangents and unneccessary side notes. All told, I love the book and how it’s enabled me to boost the quality of Stella’s daily meals.

I am finally taking better care of myself. As I plan her meals in advance,  I find that I am doing the same for me. I eat when she eats. We eat together, and though feeding her used to feel like a dreaded chore, it’s becoming more fun. I wore earrings and a skirt yesterday, and felt somewhat cute for the first time in ages. Nothing fancy, mind you. But I brushed on a bit of my beloved Jane Iredale SPF 20 Warm Silk mineral foundation, thought for more than five seconds about my outfit, and even accessorized. I don’t want to get ahead of myself, but I may shave my legs soon. (It’s blond and fine so not very visible. At least, that’s what I’ve been telling myself.)

Maybe it’s because we visited Stella’s OT last week for pointers. Maybe it’s the weather or my improved attitude rubbing off on Stella. Maybe it’s a growth spurt or her new homemade super food. Perhaps it’s all of the above. For whatever reason, Stella is chowing down. She seems to enjoy eating more than ever before. I’ve said this before many times. But maybe now, after all these months, we can stop the counting and obsessing and begin a new era of enjoyment. It would be as nourishing for Stella, and myself, as anything I can put in a bowl or bottle.

Bon appetit!

Open wide

Posted on by amberhj

So, as I reported earlier, we visited Seattle Children’s Hospital this week to see Robin, Stella’s wonderful and very wise occupational therapist. We wanted to check in and see how Stella is doing with solids. We were worried because she wasn’t eating as much as a nine-month-old is “supposed to” by now. She had not been showing any aversive behavior, and once in a while she’d chow down on bananas, avocado or toast, but overall, her intake of solids seemed pretty low–maybe 1/4 of a cup for an entire day and a few bites of finger food. And it was taking *forever*.

Well, Robin assured us that Stella was just fine. In fact, Stella has no feeding problems anymore, at all. I knew this deep down, but it was an incredible relief to hear it from our trusted expert.

We realized that the problem was us–not Stella. Robin gave us some very valuable pointers on how to feed Stella more effectively. It turns out that we’d been so afraid to push Stella, based on early battles over breastfeeding and bottle-feeding, that we weren’t offering her enough via spoon. We were way too timid. Stella doesn’t need to be coddled. Ever since our meeting with Robin, we’ve pretty much been “shoveling it in” and Stella has been enjoying 1/4 to 1/2 cup of baby food plus a few bites of finger food at each of her three meals. Just like she is “supposed to.” It’s amazing!

She seems to really enjoy my homemade blueberry puree mixed with a bit of cereal, and that makes me so happy! That said, Stella has a nasty cold, which is making food less appealing to her–especially chunky things like finger foods. She’s thrown up immediately after some of her meals due to coughing fits, but it’s tapering off as the worst of her illness appears to be over. It hasn’t slowed her down too much, but I’m interested to see how eating goes when she feels better.

Stella had been taking enormous bottles, up to nine ounces at a time for a total of 30 ounces of formula a day. Contrast that to the days when when 3 and a half ounces was HUGE! So in the two and a half hours before her first nap, she was getting 400-450 mls (that’s up to 15 ounces in the first couple hours!). No wonder she wasn’t into solids. She was full! As a result, we’re in the midst of a schedule shift. I’m almost embarrassed to admit this, but it’s made me anxious.

We had our old schedule *down.* I knew roughly how much she would eat when, and it created a nice comfort zone–for me as much as Stella. Well, as she grows we need to adjust, and that’s what we are doing now. But a low-level panic infiltrated my day. By fitting in these larger meals of solids, we are messing with the timing and amounts of her bottles. She doesn’t seem hungry enough to take a bottle RIGHT after solids. I don’t know exactly when she’ll get her 24-30 ounces for the day and it makes me nervous. I have to watch for hunger cues more closely. So, I am officially out of the comfort zone, and am figuring out what works and what doesn’t. It’s a bit of a throw back to when Stella had her tube and when we were weaning her. I never really knew when she would want to eat. I just had to pay attention and wait–not my strong suit.

I’m giving myself pep talks, and they are effective.  They sound a little bit like this:

“If I can survive the anxiety of a newborn that won’t eat, pumping around the clock, mastering the use of a god damned supplemental nursing system, navigating the complexity and chaos of hospitals and healthcare, inserting and maintaining an NG tube, getting no more than three hours of sleep at a time for two months, weaning my baby off of the tube and curing her aversion without (completely) losing my mind, I think I can figure out a new feeding schedule. Damn it, I can do just about ANYTHING.

And so can Stella.”

Behold: Tube weaning research and guidelines

Posted on by amberhj

Invigorated by our walk

Back in her tube days.

When is the last time a research paper made you cry? Around the time of Stella’s wean, and since then, I’ve come across information that moved me on many levels. I’d like to pass along these sought-after papers to as many parents (of children and babies with feeding aversions and NG tubes or g-tubes) as possible.

Supremely helpful insights and guidance are offered in the article, “Prevention and treatment of tube dependency in infancy and early childhood.”

Details and analysis can be found in the research paper itself: “Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients.”

Update: Also, from Spectrum Pediatrics in Virginia, check out this pediatric feeding tube weaning case study! This case study breaks down exactly how a well-managed and supported wean takes place.

It is with great excitement that I share with this research on tube weaning. When Stella’s NG tube was placed, I immediately started researching the topic online and only found horror stories. I went into full-on panic mode immediately, because there was no helpful information. No hope. Only desperation and despair.

This is now.

Lean but healthy, and happily eating, just months later.

These resources seemed to illuminate our world, bringing light to what was previously a dark informational void. They completely validated my feelings and my husband’s feelings–our whole struggle, our crazy experiences, our obsession–surrounding Stella’s feeding aversion and tube placement. It’s fair to say that in this case, reading was healing. It’s so helpful to understand how calories are reduced and what a respectful, child-centered wean looks like.

Why are these papers such a big deal? Because so little research on tube weaning exists, and therefore most parents and doctors are really just “winging it.” Yes, some children require tubes for long-term survival and the authors of these papers fully acknowledge this, of course. But many children who are capable of eating on their own, whose core feeding or other issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life and impairs development. There’s a better way, and we need to spread the word.

Children and their parents are sent home from the hospital with feeding tubes in place, but without anything resembling a clear time-frame or plan for tube-feeding, and certainly no plan or support for weaning. Children and families deserve better than that.

I find these two excerpts from the tube weaning article and research to be particularly powerful:

“Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of gastric feeding. It is characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into insignificance besides the nightmare of a child who will not eat or drink. Nevertheless, tube dependency is not recognized as a problem by many pediatricians.”

“Parents of tube-fed children feel unhappy about their plight. If the duration of tube feeding exceeds the predicted period of time, they will wish to start tube weaning but lack the means to do so. A vicious circle of insecurity and desperation may result. Pressure and adult expectation build up, causing the child to resist any steps towards autonomy. Parents report feelings of anger, guilt and sadness at the sight of other children eating normally. In earlier studies (Lit 42,43) we reported that 86% of parents of tube-fed children suffered from overt depressive symptoms that disappeared after their children had begun to eat normally.”

The following excerpts should give you a quick, high-level view of the study (its purpose and outcome) as covered in the papers:

“Results: 203/221 patients (92%) were completely and sufficiently fed orally after treatment. Tube feeding was discontinued completely within a mean of 8 days, the mean time of treatment was 21.6 days.”

“The rationale for this retrospective study is to specify a successful tube weaning program in infancy. Many children remain tube dependent after successful healing of their underlying disease. Tube dependency often is accepted as ‘unintended side-effect’ of the treatment.”

“The main hypothesis of the study is: specialized treatment is highly effective and allows weaning severely impaired children even when numerous previous attempts had failed. The primary objective was complete weaning from long-term tube feeding based on sufficient, self-regulated oral intake.”

“The most important point of the model is the concept of full oral autonomy of the infant from birth and the implementation of this concept into the daily handling of parents and caregivers dealing with eating disorders, feeding disorders and tube-fed infants. Hunger is the main motivation for the attainment of self-regulated eating behavior.”

“[Tube] Placement must be preceded by clear criteria and a decision as to the indicated nutritional goal and time of use. The placement of a temporary tube must generate a plan covering maintenance issues including time, method and team for weaning. Aspects of tube feeding that go beyond purely medical and nutritional issues need to be considered in order to minimize the frequency and severity of unintended tube dependency in early childhood.”

In Spectrum Pediatrics’ detailed case study, you’ll see many references to honoring and respecting the child and being attentive to the child’s cues. The goal is to allow hunger while minimizing stress, and to create a situation wherein the child chooses to become an eater by mouth:

“The team members utilized intuition and developmental knowledge in order to read the “cues” of the patient to know what the child wanted to eat, as well as with whom and where. All of the eating scenarios were very relaxed and focused on fun and play. The tube weaning program team members were cognizant of ensuring an eating environment that was comfortable and low-anxiety. If the child was ever afraid to eat, the therapists and parents would return to enjoyable play activities. He was able to cope with his post-traumatic feeding disorder and its negative effects through play in the low-stress, enjoyable environment.”

“The patient continued to exhibit changes in his hunger and sleep cycle on the third and fourth day of the tube weaning program. He had difficulties with sleeping based on his new sensations with hunger and self-regulation. The team continued to make the eating situation as comfortable as possible for the patient by “following his lead”. This led to feedings of his most desired foods and in a variety of locations, including outdoors, indoors, on the floor, in the bathtub and in the car. The team also continued to provide water-dense foods, such as melon and cantaloupe, in order to ensure that he was keeping well hydrated. It was evident that he was growing in his familiarity with new sensations, foods, and oral motor skills.”

I hope these resources are as helpful to you as they were to me! Best weaning wishes.

Nine months

Posted on by amberhj

Stella's a little shy in the pool--at first.

Stella's a little shy in the pool--at first.

So, Stella has been outside the womb for just about as long as she was in it. This seems like a big milestone to me and my uterus.

Stells (that’s not a typo–it’s one of our nicknames for her) celebrated her nine-month birthday on Sunday. The occasion was marked with a Waterbabies class (with a stop at Bellevue’s Downtown Park beforehand), and a walk to Gasworks Park. The next day, we went in to Dr. N’s office for her nine-month check-up. Ah, yes. Time for those dreaded percentiles.

Cody and I let out a sigh of relief and our shoulders dropped about six inches upon seeing the number on the scale: 19 pounds, 2 ounces. We knew that if she wound up at 19 pounds or so, she’d be at or above the 50th percentile for weight. I know, I know. It doesn’t even matter. One look at Stella tells you how happy and healthy she is. But we’ve got a nasty, lingering case of feeding aversion/tube-induced PTSD  and are grateful for any extra reassurance.

After the measurements were taken, the doctor came in, shook our hands and started tapping away on his touchscreen. He’d plugged in Stella’s stats in order to show us her growth curves, charted electronically.

“Look at this beautiful curve, ” he said, highlighting the fact that Stella’s weight was right between the 50th and 75th percentiles, just as it had been at her six-month check-up. He continued, with a bit of sing-songy positivity in his voice (which I loved), “And this curve looks great…” We saw that, for length/height, she was in the 75th percentile, just like last time. We were flying high.

Then, pointing to a dot, adrift above the highest percentile curve, he noted, “And this is how smart your baby is.” He was kidding, of course, but her head size was clearly “off the charts,” as they say. Last time, it’d been on the highest curve. Her head circumference has risen by a few percentiles between each check-up apparently. It’s not uncommon, really, and not a concern. Unless it keeps going, of course. In which case learning to walk will be a lot more challenging.

In short, Stella is thriving. Her doctor told us to feed her solids three times a day (I’d limited it to two, fearing that she might not take enough from the bottle otherwise), and to stop tracking how much formula she takes outside of that. He also suggested changing her formula to the normal 20-calorie-per-ounce concentration, which we have done. At one point, in the wake of all this, I stuttered, worriedly, with what I’m sure was a look of concern and confusion, “Um, so, like, h-how much f-formula does she NEED now?” The doctor kindly told us that we’d worried enough, and that we could stop now. Worry had become like air to us. So we are pretty much adapting to life on a new planet.

He also pointed out that, in a way, we are allowing Stella to wean herself off of the Ranitidine by not upping the dose as she grows. It reminded me of the progress she’s made int hese last three months. She’d been on two reflux medications until a couple months ago. We’ve lowered the amount of Simply Thick we put in her bottles, with the goal of soon weaning her off of that, too. She is back to the “normal” caloric density for formula–just like I’d predicted (boldy, it felt at the time) in her early tube-free days.

And that brings me to my point. So often, these days, when I look at Stella’s impossibly beautiful, beaming face, I can’t help but cry. Especially when she laughs. I remember, somewhere in the dark, dark days of December, bawling at most commercials. Our situation and those post-partum hormones were brutal–even bland Sleep Country USA ads opened deep, previously forgotten psychic wounds, apparently. But there was something especially gripping about the “Peace on Earth” spot for Pampers. Those soft, gorgeous baby faces! Those cherubic, chubby cheeks! Yes, those cheeks. Those cheeks, free from evidence of medical intervention. Those perfect baby lips, moving as if the baby is nursing in her dreams. They tormented me. Because to Stella, eating was a nightmare, not a dream, and our view of her angel face was obscured by two kinds of tape and a long yellow tube. Those babies were chubby and sleeping in a sprawled out fashion–not being force-fed while sleeping swaddled and strapped into a giant foam wedge. That commercial just seemed cruel to me at the time.

I go into her room and look at Stella every night before I go to sleep–despite that fact that by doing so I risk letting our super creaky floor wake her up. I have to do it. How could I miss out on the most beautiful sight imaginable? It is a triumph, a joy and a reminder to be grateful. I just watched the Pampers commercial again. And I have to say, Stella would fit right in with that bunch of sleeping angels–those arrogant bastards.