feeding issue

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.

Tube-free Stella: Days 4 and 5

Posted on by amberhj

Stella’s appointment with her pediatrician went well yesterday. She weighed in at 14 pounds, 13 ounces. He said that she looks good and will see her in a week. He is optimistic and doesn’t even think she will lose any weight.

Still, I confess that I have been worried. Stella has eaten “only” about 5 times and taken in 410 mls today. I’m not supposed to count but with the numbers right there on the bottle, it seems impossible to avoid keeping a mental tally. The solution, I suppose, is to place no importance on the numbers. They just aren’t important right now.

I am in the midst of a major internal struggle. And my state of mind affects Stella. So I sat down just now and asked myself, “How can I stop worrying? What can I tell myself to shut down my negative, fearful internal voice and pump up the positive, hopeful, joyful voice?”

Well…

  • Stella is happy, healthy and energetic. She smiles a lot. She’s rolling like crazy. She is giving me every indication that she is more than fine.
  • Dr. Devorah Steinecker, Dr. Numrych, Robin Glass, Barb Schlick (new to team Stella, she is a dietician) and Dr. Marguerite Dunitz-Scheer, all medical professionals and/or renowned experts in the area of baby/childhood feeding issues, are very confident that she will resume normal eating and recover from her aversion. Honestly, what more than that could I possibly need to squash this worrying?
  • Stella has already made so much progress in the eating department. She’s shown that she can do this.
  • I have been warned that her weight gain my stop for a while or that she may lose a little weight. So a day like today is to be expected in the weaning process.
  • She could eat a lot more tomorrow. She could down a bunch of mls in an hour. She will eat more when she is ready. And it will likely be soon.
  • Stella is smart and capable of knowing what she needs and telling me just that.
  • It’s only been a few days since the tube came out. The tube was in for two months, and her aversion took three months to develop before that. Stella has just undergone a huge change and needs time to adjust.
  • In my heart, I know that she does NOT need the tube.
  • I have done everything I can for her. There is no point to the worry that I have been feeling. It won’t help Stella, it won’t improve the situation, so why do it?
  • Miracles happen every day and positive thinking encourages them.
  • You attract what you focus on. So I can focus on her successes, and help her have more of them.

In closing, I’ll share something Marguerite told me via email from Austria:

“All seems very well from my distant little eye. Keep up and enjoy life. Sometimes parents have been worrying for so long and so much that they find it hard not to have a target for worrying anymore. In such cases I say: buy a neurotic goldfish and try to get tied up about feeding it. Please stop trying to feed Stella at all. Just provide food, have it around and let her decide what and when and how much she wants.”

I may, in fact, buy a goldfish. Stella would probably enjoy seeing him swim. And it may serve to remind me of the incredible bits of wisdom that have been given to me by Robin Glass, Marguerite and Devorah. They all believe in Stella. So do I.

Tube-free Stella: Day 3

Posted on by amberhj

Stella is aptly named.

Today we received an effusive outpouring of support. From a stranger with whom we’d never spoken but who’d seen Stella with the tube and couldn’t stop gushing about how happy she was to see her without it. From two shop clerks whose eyes brightened at the sight of her tube-free face. And from our beloved Dr. Devorah, who helped Stella get to where she is and who today showered me with hugs and Stella with kisses. Robin Glass, Stella’s occupational therapist and an absolutely huge source of support and wisdom, emailed to check in, even though she doesn’t work on Thursdays. Joy is everywhere.

I know we’re not in the clear yet, but Stella is doing well.  She is happier than ever. We can’t help but feel celebratory. Already. There is still work to do, but it simply feels right. The worry and fear that held me in its grip is retreating, scurrying back to the dark quarters of the universe.

Tomorrow, we have an appointment with Stella’s pediatrician. When we last spoke over the phone, on the day Stella took out her tube, he said two or three tube-free weeks would be fine, and we’ll only be on day four when we see him. Still, I’m a little nervous and hope that his assessment of Stella is in line with ours.

That tube is not going back in. Not if I have anything to do with it!

Tube-free Stella: Day 2

Posted on by amberhj

Can’t sleep so I thought I’d write a quick update. Weaning seems to be going well. Stella is happy and eating pretty often. As is expected over the course of her complete transition from the tube to the bottle, her volume will increase over time. I am struggling to let go of my obsession with counting every milliliter she takes, despite strong encouragement from several camps to do so. While I’m still working on that, I am successfully ignoring the clock, so that’s a good step. My job is to watch for Stella’s hunger cues and feed her when she wants to eat. And I’m embracing this role! She is in charge of her intake, as she should be.

I consider it a great sign that on several occasions, she’ll whine due to hunger. Then I’ll show her the bottle, and she’ll stop whining and even smile. If I put the bottle out of sight, the whining begins again. The girl totally gets that food is good stuff. She is coming around.

Today, I learned the secret to rolling success for Stella: let her be naked for a while after a diaper change. As soon as the clothes come off, the rolling begins. It’s amazing! She has completely mastered back-to-belly rolling but is still working on belly-to-back rolling. She is close–just figuring out what to do with her arms (as am I half the time). Adding a touch of suspense is the ever-present possibility that she could poop or pee all over the place at any moment. Cody and I find this all incredibly entertaining. Who needs TV when you’ve got Stella?

I talked to Stella’s occupational therapist on the phone today and it was very affirming! Based on my account of Stella’s first day and a half without the tube, she confirmed my feeling that things were going well and addressed the minor worries and questions that lingered in my mind. Tomorrow, we’ll see Dr. Devorah for another session of Cranial Osteopathy. On Friday, we’ll visit her pediatrician. Other than that, we’re taking our walks, rolling around, reading books, listening to music, playing and enjoying our days free from the hassles, worries and snag-potential of the tube!

Speaking of our walks, I had the growing suspicion that Stella was becoming “The Tube Baby of Wallingford,” an adorable but medicalized mascot for this Seattle neighborhood. We enjoy a stroll or two every day, with Stella facing out in the Baby Bjorn and taking in the world around her, and along the way we see a lot of the same neighbors, clerks, walkers, joggers and baristas. Many seem taken with Stella and I had the feeling that she received some extra looks from some curious people because of the tube. It felt so good to visit our usual shops and see that people share in our excitement about the tube being gone.

We remain very optimistic. Focused on the mission at hand, but having fun, too. 

Thanks for following her progress. It means a lot to us. Stay tuned.

Tube-free Stella: Day 1

Posted on by amberhj

Taken just after the tube came out.

Taken just after the tube came out.

Stella is off and running. I am so proud of her. In short, she is responding well and our confidence is growing. She can do this.

It is expected that she will lose a little bit of weight. I am on strict instructions to NOT WORRY about how much she eats or when. To NOT PANIC if she goes a few hours without eating. That is the challenge. I am simply to trust her to know when she’s hungry and how much she needs. To know that she will tell me in her own way that she is okay–or if she’s not. This simple trust is a bit harder than it sounds, due to our scary experiences of a couple months ago.  But we are beyond all that now. I am ready and so is Stella. Her intake will increase as she adjusts.

The only remaining concern is her reflux and how much of an impact it has on her desire to eat. It definitely still bothers her sometimes. But I think she is comfortable enough to pull through it. I don’t think it will stop her.

This morning, we ventured over to Seattle Children’s Hospital for Stella’s occupational therapy appointment with Robin, who was incredibly helpful and reassuring as always. She is pretty central to this process and to Stella’s progress thus far. I am to call her tomorrow to check in. I feel very supported in this proces–by Robin, Stella’s pediatrician, and the Austrian doctor as well, who has been keeping in close email contact. It’s funny–the Austrian clinic’s approach to weaning is almost identical to what I’m hearing from Robin. It’s all coming together.

This is huge. The tube weaning process is no cake walk, but we are feeling good. Stella seems happy–even more so than usual.

As so many of you have already said, “Go, Stella, go!”

The stubborn determination of hope

Posted on by amberhj

Good news. Stella is back to taking in about half of her daily calories from the bottle, just as she did before the recent regression.

However.

My feeling is that the tube is preventing her from recovering completely. I believe that it exacerbates her reflux and makes swallowing more difficult. I found and paid for two medical research papers that support my beliefs. I hope that she proves me wrong, and soon, but I am unconvinced that our current mode of treatment will enable Stella to return to 100% normal bottle feeding. I am ready to take urgent action. I am questioning the medical establishment and ready to try something else.

I learned about and have been in touch with a renowned feeding clinic in Austria. Their cold-turkey approach to tube weaning is radically different that what is practiced here in the states. They believe that the baby or child must drive their own intake, rather than the tube. They share my belief that tubes, over time, worsen aversions and lead to tube dependency. They have studied the topic for over 15 years and have a success rate of 92-95%, depending on the age group. The doctor who runs the feeding clinic told me that Stella’s age is ideal for weaning and that we may be able to achieve it through email coaching, rather than having to go all the way to Austria–although I am eager and willing to go to Pluto if that’s what it takes.

The drawback to this method, what is called the “Graz” approach, is simple. The babies and children treated may not gain weight for a month or two. I believe that Stella would be on the shorter of those timeframes, since she already takes half of her formula orally and the clinic treats many children who are 100% tube fed. Stella will be hungry and not fed until she asks for food. This may seem harsh to some, but I believe it makes sense. I believe that Stella, if able to have more control over her eating and freed from the discomfort and difficulties of the tube, would respond very well. But she would need some time to pull through once the tube is removed. Most doctors here are not willing to let a baby have low or no weight gain for any period of time, so the tube stays in. They, of course, have the babies’ best interests in mind, but they seem beholden to the tube and unaware of, or too willing to overlook, its detrimental effects in the name of weight gain. I believe that any short term weight gain delay would be more than made up for with the restoration of a healthy relationship with food and the resulting appropriate, baby-driven weight gain that would follow.

Stella’s life was never in danger. The tube was placed for therapeutic purposes, not just to help her gain weight. The tube was helpful in allowing Stella to say “no” and be heard, instead of constantly being force-fed, which must’ve been very traumatic for her. The tube took the fight away from eating. The tube has enabled her to make progress. But I believe that we have reached a point at which the tube’s negatives outweigh the positives. And I am ready to take bold action in the face of a lot of opposition in order to do what I believe is best for her.

Cody and I are going to consult with her occupational therapist and pediatrician on this. We will continue to bring Stella to a cranial osteopath. We are going to do some research into the Graz method and the Austrian clinic. And then we are going to decide how to proceed. Of course, in the meantime, we would love to see Stella down bottles left and right, thereby eliminating the need for tough decisions or new approaches.

Even on gut-wrenching days when Stella resists the bottle like it’s full of toxic waste, there is an incredibly wishful part of me that looks to the next bottle as a possible turning point. There is a clump of raw hope that sits smoldering in my chest like an ember in the darkness. It’s always there. And it’s going to light the way to a tube-free Stella.

How will we play this hand?

Posted on by amberhj

In between feedings and worrying about feedings, I was flipping around the airwaves when I briefly paused on a news show. I caught the end of a remembrance montage that honored some of the incredible people we lost in 2008. Randy Pausch was one of them.

If you haven’t seen his famous “Last Lecture,” I command you to go watch it RIGHT NOW. Whether you catch the long version he presented at Carnegie Mellon University, where he was a professor, or the short version that he shared on Oprah, you’ll be changed  by it. I was.

Randy Pausch, a very loving husband and father of three little ones, was diagnosed with pancreatic cancer and given only months to live. With this lecture, which absolutely overflows with fatherly wisdom, humor, honesty, insight and an astoundingly positive attitude, he gives us all a great gift. Although it was initially presented under the title, “Really Achieving Your Childhood Dreams,” it’s truly a guide to living well, and not just that, but living joyfully in the face of obstacles and even gut-wrenching misfortune. I first saw his talk many months ago, and watched it again today. In light of the situation with Stella, his words had a whole new meaning. He gave me a good smack on the forehead, actually.

He reminded me that I must choose to be a Tigger instead of an Eeyore. To allow Stella to paint rockets and elevator doors and whatever else she want on the walls of her room, if someday she wants to. And to see brick walls merely as opportunities to show just how much I care about and want something.

“We can not change the hand we are dealt, just how we play the hand.” There are so many more amazing quotes from Randy’s lecture, but to me, that one pretty much says it all. When I scale this massive bit of wisdom down, it applies to every aspect of what we are going through. From our overall attitude as parents, to our view of Stella’s feeding aversion, to how we respond to an individual feeding that doesn’t go well.

Randy’s grace in the face of what amounts to a death sentence left me in awe, and allowed me to put our situation into perspective. The tube and Stella’s feeding issue are unexpected twists in our story. A bit scary at times, sure. But it’s nothing we can’t handle. The tube can’t stop us from having fun, being silly, reading Goodnight Moon until it’s seared in our brains, going on long, lovely walks, and loving and enjoying each other’s company like crazy. It’s just a brick wall that we are going to smash down. Then we’ll dance on the debris.

(Thank you, Randy.)