Tube weaning

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!

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.

Meet Diego

Posted on by amberhj

Back in mid-November, when Stella’s NG tube was put into her cute nose and down into her then-hungry and confused tummy, I was understandably freaked out. I wondered if it was the right thing to do. I worried about how it would affect her. So I did the worst possible thing I could do. I turned to the internet for answers. What I found, mainly on message boards and on random, unofficial-looking “medical” websites, was horror story upon horror story about how NG tubes make feeding aversions worse. How they lead to complete oral aversions, make reflux worse and pave the way to surgically inserted g-tubes. I was so scared.

Rocio and Diego, bonding not long after his premature birth.

Rocio and her precious and miraculous Diego, bonding not long after his premature birth.

I did have the good sense to realize that the people most likely to turn to the web are those who, like myself at the time, are struggling. If things are going well with your child, or if you’ve overcome an issue and are no longer in it, you’re less motivated to go to the web and tell your story. You don’t need answers and support. You’re not desperate for any tidbit of information you can get. I knew that out in the real world, there were probably lots of babies who’d been on NG tubes for a short time and then resumed normal eating. Through my occupational therapist, I learned about the amazing Libby. And then, one night, through comments she left here on this blog, I met an incredible mother named Rocio and her son Diego.

That evening, Rocio did what I had done. She felt a rising sense of panic after reading terrible anecdotes about NG tubes online. She then came across Stella’s story and was encouraged to see that Stella was making progress with eating. Rocio and I began to communicate regularly via email. In a sense, it felt like we were in this together. This woman I had never met who understood everything I was going through and vice versa. We were going to get our babies off the tube. And no other outcome was acceptable. As scared as we were, we knew they could do it.

Rocio’s son Diego was born prematurely, at 28 5/7 weeks gestation. He was tube-fed from birth, first through his mouth, then, after graduating to “level 2” in the NICU, through his nose via a nasogastric (NG) tube, just like the one Stella had. As Rocio explained, Diego developed reflux while learning how to eat, which set him back. As in Stella’s case, the pain all but eliminated his desire to eat. After spending three months in the hospital, Rocio pushed to have Diego sent home, so that he could enjoy a more comfortable, cozy, non-medicalized environment. So, Rocio and her husband bravely learned how to maintain the NG tube, and headed home with their son, unsure about what the future held.

Like Stella, Diego had a Merry first Christmas--even with the NG tube.

Like Stella, Diego had a Merry first Christmas--even with the NG tube.

Rocio was on the same nauseating rollercoaster we had ridden. So many ups and downs. Exhilarating upswings of hope followed by crushing disappointments. Early on in our communications, at the very end of December, she told me, Diego was “not passing the 25 to 30 cc mark of drinking his bottle per feeding.” (There are about 30 cc’s or mls per ounce.) It was a tough time. But once in a while, he finished entire bottles–it took over an hour, but he was FINISHING them. And more progress quickly followed. One day, she told me that Diego took 90 mls in 45 minutes. He was showing that he could do it.

On February 4th, I received an unforgettable, elated email from Rocio. She told me that Diego had been without a tube for three weeks, and that he was thriving. In fact, he was gaining approximately one ounce  per day! Based on all the research I’ve done and my learning from the director of the Austrian tube weaning clinic, I know that this is amazing weight gain, especially so soon after the tube’s removal. Rocio was thrilled, and I truly felt her joy.

A GI doctor confirmed that Diego’s tube was gone for good. At this point, Stella had been without a tube for exactly one month, and it was also clear that her tube was gone for good. We’d done it.

Like Stella, Diego still had some difficulty swallowing. For us, thickening Stella’s formula did the trick. Last I heard from Rocio, Diego was going to have “ECI (Early Childhood Intervention) therapy because the swallowing study projected that he still needs to learn how to swallow better.”

I asked Rocio what she believed was the key to Diego’s success. Her answer was simple. First, Diego needed time to mature. Having been born so early, he didn’t have enough practice. (Babies learn to swallow in the womb.) Then, Rocio needed to get over her fear. Naturally, she worried that he would get sick or be undernourished upon the tube’s removal–even if a deeper part of her knew he no longer needed it. Lastly, she pointed to the removal of the tube as the most important aspect of his feeding progress. Rocio explained, “Pray and have faith. Babies will eat without [the tube] once they feel the need and understand that if they do not want to eat the regular way, they will have no other way to do so.”

With his tube days behind him, Diego is radiant and thriving!

With his tube days behind him, Diego is radiant and thriving!

Rocio fought for Diego. She faced incredibly challenging circumstances with Diego’s premature birth and extended hospital stay. She had to push just to take him home. Then she found the support and therapy he needed. Then she made the big decision to follow her instincts and take out the tube. This is a beautiful, healthy boy who has overcome some daunting odds. And he’s very lucky to have Rocio as his mother.

Whenever I think about Stella’s challenges with eating, that very trying time in our lives and how we overcame it all, I’ll think of Rocio and Diego, too.

My other resume

Posted on by amberhj

I’ve jumped back into the freelance writing life in an effort to make a bit of money while I stay home with Stella Bella. This, of course, necessitated the updating of my resume.

It got me thinking. Some of my most impressive achievements and abilities will never grace the pages of this supposedly all-important document. And it seems like a shame. I am referring, of course, to motherhood–all that it requires. And with that, I present my other resume…

EXPERIENCE

Mother, 8/17/08–present (lifetime commitment)

  • Collaborate with Stella Eleanor’s father (my husband) to ensure that she grows and thrives; oversee everything from basic maintenance, such as diaper changes and feeding, to high-level development including babbling, drooling, sitting up, laughing, and rolling/tummy time, with plans to teach her how to be kind, walk, use the toilet and drive
  • Provide attention, protection, guidance and full range of entertainment services including peek-a-boo, tickling, general zaniness and impromptu songs, stories and farting noises
  • Willingly put my daughter’s needs before my own while still taking care of self and providing excellent example of how to live life to the fullest
  • Manage public relations; handle photography and mailing of seasonal cards and wellness updates; manage upkeep of Flickr account with near-daily shots of Stella to prevent extended family from suffering cuteness withdrawal
  • Love that girl with all my heart, 24 hours a day, seven days a week, 52 weeks a year–even when her yelling reaches peak annoy-ability levels

Giver of Life, 8/15/08–8/17/08

  • Gave birth to baby girl weighing 7 pounds and 7 ounces; filled with pure joy upon her arrival
  • Kicked ass throughout 32-hour un-medicated labor during which baby’s head was transverse (sideways)
  • Nearly broke husband’s hands with vice-like grip; will try harder next time

Grower of Human Being, 11/08–8/09

  • Provided egg for successful fertilization; worried endlessly about fetus from moment of conception
  • Attended prenatal yoga, birthing and parenting classes despite overwhelming exhaustion and overwhelmed bladder
  • Ate enough cheese to feed all of Wisconsin for three years; consumed record amounts of grapefruit juice
  • Tolerated the shooting of sharp pains up my rear-end for several months; withstood debilitating hip pain and baby’s roundhouse kicks
  • Enjoyed pregnancy despite all of the above

Warrior, 10/08–02/09

  • Assembled and coordinated a top-tier team of Seattle doctors, as well as two lactation consultants, an occupational therapist, nutritionist, dietitian and cranial osteopath
  • Managed to maintain sanity when baby refused to eat; chugged olive oil and ate bacon in a valiant attempt to fatten starving, anxiety-ridden self and improve quality and caloric value of breast milk
  • Mastered use of Supplemental Nursing System while successfully limiting use of the “f-word” to 400 times per day; managed insertion and maintenance of god-forsaken nasogastric feeding tube and associated god-damned pump and evil face tape and crap-tastic peripherals; sacrificed small but previously perky boobs to hospital grade breast pump
  • Navigated labyrinth of hospital and health care challenges; slashed red tape and improved child’s outcome by 1000%; successfully argued case for the removal of nasogastric tube and executed successful tube weaning; produced a happier child and family as a result of round-the-clock efforts
  • Analyzed growth charts, lab results and intake levels; conducted in-depth, terrifying online research on daughter’s condition and treatment

EDUCATION

The Parental Institution of Barbara and Gregory Hescock

  • Coursework in everything, with an emphasis on love, the value hard work, and a good sense of humor

School of Hard Knocks

  • Classes included Terrible Mistakes, Bad Relationships 101, and The Awkwardness of Middle School

Sink or Swim Academy

  • Curriculum revolved around parenting without anything resembling adequate preparation

SKILLS SUMMARY

General: Expert-level nurturing, crisis and conflict management, hazardous waste handling and sanitation, budgeting, soothing, teaching life skills and morals, child safety, nursery decorating, baby-wearing, silly face and nonsensical sounds mastery

Technical: Milk production, human creation, swaddling, rocking, one-handed diapering (experience with both formula and breast milk poop platforms), bottle maintenance, reflux abatement

COMMUNITY SERVICE

  • Contributed a new member to the human race
  • Responsible raising of a kind, compassionate, contributing citizen
  • Adept removal of screeching baby from public places, ensuring a peaceful community
  • Addition to the world of a love that grows by leaps and bounds each and every day

Please no.

Posted on by amberhj

Stella has been getting more and more difficult around eating again and I am starting to freak out about it.

She is starting to refuse the bottle more and more. She doesn’t want to eat upon waking up after sleeping for 10 to 11 hours. We now wait an hour after she wakes up, and even then she only takes 100 mls. Prior to this rough patch, she was taking 150-190 from all bottles. Spoon feeding is really challenging–it’s not her lack of interest that bothers me, it’s that she gets so upset when you offer it to her. She will take some if she holds the spoon, however.

I am really concerned. To be honest, I am feeling like I physically can’t continue to worry about and deal with the trials of this feeding issue. We’ve been through so much already! I feel such a sense of dread. It’s just so frustrating and draining and worrisome. I was so sure that she was on solid ground. Now the earth is crumbling beneath us.

I thought we were past all this.

I really hope that this is a fluke. Or that a tooth is coming in. Or something innocuous explains this behavior. Perhaps reflux is flaring up and we need to up her dosage. Maybe we need more cranial osteopathy sessions. I can’t wait to get on the phone with Robin, her occupational therapist, and talk about it. This is tearing me apart. My mind races with worry. I feel a bit sick to my stomach again.

Wish us luck…. thank you.

A freakout. A rant. And endless gratitude.

Posted on by amberhj

Don't worry, it's just prunes.

Don't worry, it's just prunes.

Early this afternoon, Stella got upset and took only 100 mls from the bottle. It was really weird. All my fears and worries came rushing back.

Granted, she took around 180 before and after that. But what a scare. I was so upset, I yelled at Cody like a maniac. He was holding her because he wanted to try feeding her again, after I told him what had happened and how she didn’t seem to want to eat and was getting fussy about it, but all she did was cry and cry so finally I screamed from the other room, “JUST GIVE HER THE PACIFIER!!!” The idea of trying to feed her when she clearly did not want to sent up an army of angry red flags. Forcing it never works–it makes her want to eat less. Not that he was really forcing it, but he was nearing that old territory in my mind and I could not handle it.

It will take a while for me to really accept that she will not always take what I expect and that this is okay.

In the background, I am feeling nervous about her six-month “well child” visit with her pediatrician. He hasn’t seemed to have fully understood how well she is doing. How huge it was for her to start enjoying eating and to not only not lose weight but to start to gain a decent amount after just three weeks without the tube. I mean, it doesn’t really matter what he thinks. And there is no chance of Stella the Tube Girl II showing in theaters–ever. That sequel will never be made. But still. The last couple of times I’ve left his office feeling pretty crestfallen. Like the feeling of letdown when you go on a great first date, then have a terrible second date. You just feel so deflated. The neurotic me (well, maybe that just is me) is afraid that if Stella doesn’t gain an insane amount of weight, he’ll act all concerned and I’ll get all riled up and strongly disagree with him and stand my ground but then secretly, after we leave, I will worry about everything he said and fall apart and it will be unpleasant for all.

So I weighed her today. It was totally unnecessary and probably counter-productive. But I just had to. She weighed in at 15 pounds, 14.5 ounces. So by our count, she’s gained about 8 ounces in ten days. It’s great! Of course, I hear the doctor’s voice in the background saying how he likes to see an ounce a day. But from what I understand, around this age, the rate of gain slows down naturally. And really, she’s happy and healthy and clearly gaining an appropriate amount of weight so who cares!

She’s a week away from her 6-month birthday and when she hits 16 pounds, and clearly she will surpass it by several ounces, she will be above the 50th percentile curve, I think. She was in the 50th when she was born. I will remind the good doctor of this if need be. Have I told you how much I hate percentiles? They drive me nuts. I think that unless a baby is in trouble, no parent should even know the percentile. What’s the point? There are chubba-butt babies that are completely off the charts and their parents know they are big babies. There are babies that are petite–I have a feeling their parents know they are small having looked at them every moment of every day–and very content in the 3rd percentile. And the vast majority of these babies, all over the spectrum, are healthy. So what’s with the percentile obsession? The growth percentile calculator on BabyCenter says, “See how your child’s growth compares.” So there we go, comparing our babies with their peers right out of the womb based on some number that, for the most part, means nothing. I doubt my parents knew what height/weight percentile my sisters and I were in. And I KNOW they didn’t chart our head circumferences! They just knew we were eating, pooping, sleeping and, overall, happy and healthy. That was enough! And it should be for today’s parents. Rant over.

Yesterday’s occupational therapy appointment went very well. Stella ate beforehand, so Robin didn’t get to see how fabulously she eats, but we were able to discuss her amazing progress, affirm the whole journey, and get some questions answered. We got some great tips on how to encourage her to get more comfortable on her tummy and with rolling and sitting up. We learned that we should definitely proceed with spoon feeding full steam ahead and not worry about it adversely affecting bottle feeding. We have some other decisions to make–like when to switch to 20-calorie-per-ounce formula and whether we want to see if the baby food in the bottle really is making it more appealing or if it was just coincidence. I think Cody and I are reticent to switch anything up just yet, but we probably will at least switch her to 20-calorie-per-ounce concentration, as it is the standard for breast milk and formula and may better allow Stella to regulate her intake.

I gave Robin a “thank you” card and photo to remember Stella by–one in which she is clutching a bottle the way Gollum held the ring. I remember our first meeting with her well. We were so thrilled to be there. To finally be getting the help we needed, from the best of the best. (Robin is a renowned feeding specialist.) I’d been trying so hard to get Stella to eat for at least a month at that point and I was falling apart. No one had been able to figure out what was wrong, and they didn’t see the daily struggle and didn’t have the sense of urgency that was needed to move things forward. I felt so alone and hopeless and worn down. During that appointment Robin said with such confidence, “I’m going to see you through this.” And she did. As I reminded her in the card, she listened to me cry and rant. She calmed me down, educated me and backed me up. I am forever grateful.

And that reminds me of all of the incredible people who helped us weather the storm…

Barbara Hescock, my mother, who stayed with us for almost three whole weeks and spent Thanksgiving cooking for three, two of them severely depressed, in our crappy kitchen instead of her new wonderful one with a crowd of eager company as she’d planned long before… she arrived during our stay at Children’s and got me through the worst days of my life, helped me rise to the challenge of dealing with the difficulties of the tube while feeding me (everything made from SCRATCH–even tomato sauce–with so much love) so I didn’t disappear just as she so graciously did during Stella’s first weeks–she was the hands behind my hands, just what every new mom truly needs–and who even tolerated me snapping at her a couple times without holding it against me

Robin Glass, MS, OTR, IBCLC, occupational therapist, who, as I just mentioned, was our rock and provider of wisdom, sanity and hope!

Devorah Steinecker, MD, cranial osteopath who treated Stella about a dozen times and helped to greatly decrease Stella’s reflux and aversion, who was 100% confident that Stella would get better and became one of our biggest supporters when we removed the tube, a time when we really needed positive voices around us

Sarah Tyack, RN, lactation consultant with whom I met several times who helped identify Stella’s reflux, a major breakthrough, and who saw me at my worst and instead of judging me, connected me with the help I needed to cope and the help Stella needed to recover

Janet Whalley, RN, co-author of Pregnancy, Childbirth, and the Newborn: The Complete Guide and lactation consultant that I met with several times who became a mentor and person to call when I got worried, who was always so understanding and concerned about us and provided any and all ideas and information she had

Ann Keppler, RN, co-author of Pregnancy, Childbirth, and the Newborn: The Complete Guide and very well known in Seattle for her mindblowingly helpful First Weeks seminars, she sent me the most amazingly supportive and helpful email in response to my random, frantic email to her

Judy Herrigel, RN, founder of First Weeks and longtime lactaction consultant to whom I reached and talked to about Stella’s issues and who expressed much compassion and understanding

Dr. Trish Raymer, one of Seattle’s VERY BEST family practitioners–my doctor and was Stella’s doctor until we switched to Numrych who had instant access to all of Stella’s lab results, appointment info, etc. at Children’s Hospital which made our lives easier–who got Stella in to see Robin and who admitted us to Children’s when she saw that we needed urgent help, and who was always so delighted to see Stella that it warmed my heart even on my soul’s coldest days

Dr. Thomas Numrych, Stella’s current pediatrician, who returns my emails and calls and spent a lot of time talking to me during our toughest days… I have been complaining about him a bit,sure, but I think he’s a good person and good doctor

Dr. Marguerite Dunitz-Scheer, director of the tube weaning clinic in Graz, Austria who always knew that Stella could do this and who helped convince me to let go of at least some of my fear

Kathleen Kendall-Tackett, Ph.D., IBCLC, a breastfeeding expert—whom I’d heard talk about postpartum depression and breastfeeding issues in a podcast and emailed out of the blue–who talked to me for quite a while on the phone trying to troubleshoot our issues and provide encouragement

Dr. Jessica Bloom, cousin who just so happens to be a pediatrician, who talked me down from ledges and watched Stella for a whole day (after all, if you can’t let a relative who is a pediatrician watch your child, then you are hopeless!), when I was really low and about to starve to death from anxiety

Barbara Reilly, a wonderful, funny, compassionate friend who provided much needed food on multiple occasions and insisted on watching Stella, allowing us to get dressed up and go out for five whole hours!

Susie Estok, a fellow writer and kick-ass friend who watched Stella while I got my hair cut then spent the day with us, making me feel a lot less lonely and lot more hopeful

Maureen Devine, a friend and co-worker with the most amazing heart who stepped up to provide nourishment and support

Rocio Carballo, a mom who was in the same boat with the same fears who contacted me through the blog… we were able to relate and helped pick each other up when we were down and I’m so happy to say that her precious Diego is also tube-free and eating like a champ!

Dr. Stephanie Farrell, an engineer and professor that I don’t know at all and emailed out of the blue about her experiences with tube weaning her own daughter and who sent me the most supportive, wonderful reply

Trish Norton, a mom (to whom I was connected through Robin Glass) who went through very similar struggles with her daughter Libby and who took time to talk to me, a complete stranger, honestly and openly about her experiences and how she got through it, making me feel so much more normal and less crazy and alone

I will always think of these people with such fondness and gratitude. When Stella was not gaining weight, before we had any idea of what was bothering her, that growth percentile curve felt like a cliff. We were careening around a narrow corner and about to fall into a deep, dark abyss when one by one, Team Stella stepped into our lives, and gently but firmly pulled us away from the edge.

Yes, these people are Team Stella, forever!

Thank you.

Toes company

Posted on by amberhj

Stella would be very happy if left naked and able to nibble on her toes all day long. That’s right. Today, she finally, after many past efforts, put her foot in her mouth, and chomped on her big toe. And then she kept doing it. Over and over.

She is talking more and more. Making a wider variety of sounds, including one very wordy sounding verbal concoction that sounded something like, “a-GOW-ya-ma.” Though, she mostly sticks to the basics: motorboat noises, monster growling, and the simple but timeless classic, hollering (at the top of her lungs). Also, she laughs and squeals. A lot. It’s delightful.

Stella and I enjoy some lovely conversation after eating brunch at Tom's.

Stella and I enjoy some lovely conversation after eating brunch at Tom's.

Stella had a ball with Phyllis and Josh today at Tom's! Stella only yanked on Phyllis' hair once--not bad!

Stella had a ball with Phyllis and Josh today at Tom's! Stella only yanked on Phyllis' hair once--not bad!

We had brunch at Tom’s today. We were able to time our visit between feedings and naps and it worked out perfectly. Stella really enjoyed it for the most part! A few people held her and she was cool with it. At one point though, due to teething or sunshine in her facem, she wailed briefly. Tom’s new dog immediately chimed in, howling along with her. It was so cute I almost threw up my waffles and bacon onto the table.

We have ceased to measure how many milliliters she takes from the bottle each day. I knew by a rough mental count that she would up around 1,000 yesterday, but I didn’t write anything down or keep anything resembling close track. There is no need to obsess about it anymore. Actually, the need has been gone for a while now, but until this weekend, I was still very much compelled to write it all down. Every little ml. It was a total compulsion. An ingrained habit. Throughout Stella’s feeding aversion and time with the tube, I think that writing things down gave me a feeling of control. That somehow, by recording it all, I could see the problem more clearly and make it better. There was a lot of love and fear in those notebooks and Excel spreadsheets… exhibits A through Z in making a case for getting her the help she needed. But she’s beyond that now. We all are.

Tomorrow, we will visit Stella’s occupational therapist, Robin Glass at Seattle Children’s, probably for the last time. We have some questions for her. We would love some guidance on how to fit in baby food amid her bottles, which she has just recently come to love. We are putting baby food in her bottles, so that may affect how much baby food we can offer by spoon. We’ll see. I’m really looking forward to seeing Robin and thanking her from the bottom of my heart, feet, soul and gallbladder.

Stella will be six months old in nine days, on February 17th. I can’t yet fathom this. We will definitely be celebrating her half-year mark with half a cake and plenty of champagne. Rose champagne, of course.

Days 22 through 25: Stella got her groove back

Posted on by amberhj

As Stella’s occupational therapist put it, “Stella has internalized the joy of eating.”

Her feeding aversion is, well, history. A memory. Though not a distant memory, of course. We still get nervous if she goes for a long stretch without eating. We still watch her eating behavior like mama and papa hawks, and breathe a sigh of relief when she finishes a bottle. But mostly, we are in complete awe of Stella’s incredible appetite. Her ability to down six ounces in less than five minutes. It’s nothing short of a miracle. But then, miracles don’t come easy. You have to work for them. You have to be patient. And you have to believe. There were moments when this wonderful outcome didn’t seem possible. But deep down, we always knew she could do it. That the tube had to go. There was no question.

Stella’s intake for the last week has been between 770 to 875 mls a day. Of course, her formula is made at a 20% higher caloric concentration than typical breastmilk or formula. So she’s getting quite a lot of nourishment, which is quite evident in her diapers! The really crazy part, for us, is that she now takes in 160-180 mls at a time. We remember the days of her taking only 20 to 45 mls, and thinking, “Well, that’s good! She’s eating, and we can build on that!” Then we were absolutely thrilled when she showed she could take 100 mls on occasion. We remember her screaming at the sight of the bottle, arching her back and tossing her head back when the bottle was offered. Now she lunges toward the bottle and pulls it to her mouth. She cries UNTIL she sees the bottle. It’s just astounding.

I remember driving one day, during a wind storm that hit at the height of Stella’s eating troubles, listening to Patty Griffin’s “Love Throw a Line” and singing and crying. This was back when I was so sick with worry, and so overwhelmed, that I couldn’t eat or sleep.  I stopped at a light and looked up to see a mighty, towering evergreen tree whipped up into a frenzy by the wind. The trunk was bending and swaying and the bows were being tossed about so vigorously that the tree looked angry, as if it were fighting back at the storm. Yet, it was clear that this tree could handle the winds. In fact, it was designed to withstand such a storm and had lived through hundreds of them. I saw myself in the tree and its wild, fitful dance. In that moment, even though I’d been feeling like I was losing my grip, I knew I could handle it. That I would help Stella recover, and that we would be okay. Even as Stella and I struggled, we were staying strong at the same time. Just like that tree. I’ll always remember it.

Yes, we’ve weathered a storm. That said, during our stay at Seattle Children’s Hospital, I was struck by how incredibly lucky we are to have Stella–a healthy, happy child, who had a temporary, treatable issue with eating. There are so many children and babies just struggling to survive. Babies like Kayleigh Freeman, who was born weighing just one pound and who has defied all the odds, and bounced back after countless surgeries and trials. (We bought bracelets to support her and will wear them with pride when they arrive!) This experience with Stella has truly opened my heart. I already loved all babies and children, but now there is a whole new layer to that love. A compelling urge to help little ones in need. Cody and I already sponsored a child, and recently, I signed us up to sponsor another little girl–her name is Anyi and she lives in Honduras.

We’ve learned and grown so much over the past five months. (Can you believe she is five months old???) We are truly blessed. Stella is thriving and, as always, an absolute joy. I want to help other parents find the same feeling of  happiness and relief that we have experienced. In the coming weeks, I will find a way to put my strengths, talents and passion to work for children who are struggling. If I can make life even just a little bit better for even just one other baby, well, it would make our experiences all the more meaningful.

You know that feeling after a storm has passed? Quiet and calm settles in over everything. There is a striking stillness in things recently battered by what seemed like relentless winds. The scents and colors of the earth are more vibrant thanks to the rain. That’s what it’s like around here now. Brighter and more peaceful. Except for the teething.

Ha! Now we get to focus more on all the “normal” baby challenges and happenings. Every time I bend down to pick up the teether toy that Stella has dropped for the thousandth time, I smile.

Days 18, 19 and 20: Stella turns a corner!

Posted on by amberhj

Finally, we can all relax.

Finally, we can all relax.

I love Christmas. A tree is a must, of course. In fact, a Christmas tree really has to be at least six feet tall for it to feel right to me. I’ve been collecting ornaments for years and love every one of them. Now that we live in a house, I wanted to decorate the porch with lights so that our home was as festive on the outside as it was on the inside. I bought many more strings of lights than was necessary, put them up with care, plugged them in, and–nothing happened. The lights worked when I plugged them in indoors, but the outdoor socket was a dud, apparently. I was disappointed, but quickly moved on. Both lazy and distracted by the goings on with Stella, I just left the lights hanging up out there, an ineffectual tribute to my holiday spirit. Or so I thought.

Last weekend, Cody and I attended his company’s holiday party, delayed due to Seattle’s crazy holiday weather. We were gone for five hours, and, yes, we did manage to find topics of conversation other than Stella–though of course we talked about her eating, poop, and cuteness at least a few times each. Upon arriving home, I believe we were arguing about some petty little thing that I can’t recall when we looked up and noticed that the Christmas lights on our front porch were ON. The festive, unexpected sight stopped us in our tracks.

We still have no idea how it happened. Neither does our friend Barb, who was watching Stella that evening, or our landlord. We flipped every switch we could find to see if we could figure out what had given them power. We never found an answer. So, we have chaulked it up as a “post-Christmas” miracle. A sign.

Yes, it may be magical thinking and total conicidence, but since the icicle lights’ spontaneous illumination, Stella’s eating has steadily improved. She didn’t eat much while we were at the party, but she did take 200 mls from Cody before bed that night–a lot in a short amount of time. In fact, since that mini-miracle, feeding has become enjoyable for all of us! Something has changed in Stella. And THAT is truly miraculous. 

We don’t want to get ahead of ourselves. There could very well be more ups and downs as Stella continues to adjust to life without the tube. Actually, I’m sure there will be. But what really, really amazes us is the shift in her mindset and behavior around eating. Over the last couple of days, Stella has decided that she WANTS TO EAT. She gets hungry often, and when she sees the bottle, she LUNGES toward it, grabbing it with both hands, pulling it to her mouth and sucking on the nipple before we have a chance to settle into our new, seated, comfortable, relaxed, unswaddled feeding position. I can’t tell you how incredible this is. We are in awe.

The numbers aren’t as important as what I’ve just described. However… on Thursday, she took 700 mls. Friday, she took it up a notch to 725. Saturday, she upped the ante to 770. And today, she ate a whopping 875–with gusto! Stella has left no doubt. She can do this. She IS doing this.

There is a new energy in our household. Joy? No, that was always there, surrounding Stella, even with the tube. I think it’s relaxation. After so many months of worry, it’s another little miracle to savor.