NG tube

Day 14: Manic Monday

Posted on by amberhj

Stella has been free from the tube for two weeks as of today. Clearly, she’s made fantastic progress. Yesterday, she showed us that she can do it. We now believe that it’s just a matter of time before that level of intake becomes the norm for her.

HOWEVER. Today was a bit of a struggle. She resisted eating quite a bit. As of 10pm, she’s taken about 600 mls. Not bad. But I have been concerned about her resistance–her behavior around eating. So we are taking a step back to make sure we aren’t forcing the bottle, just offering it. She has come so far and we don’t want to do anything to set her back.

I completely freaked out today. I just about lost it. Frustration and impatience got the best of me. I threw another bottle. Something I said I’d never do again. And you’re probably wondering why, after Stella did so well yesterday, would I get so upset? Well, she took most of her bottles from Cody yesterday and I was beginning to wonder if she wasn’t eating as well with me. That, along with Friday’s appointment, brought my confidence level way down and I began to fear that I was somehow holding Stella back or messing everything up with my worry and with how I hold her when I feed her, whether I am reading her cues or offering the bottle at the right time. She only took small amounts at a time from me today, except for her first bottle, and it was not easy. I guess I began to overthink everything. I let worry take over. After yesterday, today felt like a letdown and I really blamed myself.

So, I am taking some deep breaths as I set my intentions for tomorrow, a day that will be full of history and hope due to the inauguration. There is a lot of good energy in the air and I want to be part of that. I want to celebrate with Stella. I want to calmly offer her the bottle when she seems hungry, or when it’s been a good while since she’s eaten, and if she says “no”, I will honor that and trust that she will eat when she is ready. She will tell me what she needs. She always does. I just need  turn down the dial on the noisey distraction that is panic, and listen.

Days 12 and 13: A big meltdown. A bigger milestone.

Posted on by amberhj

I am an incredibly emotional and sensitive person. After reflecting on this and how it relates to my new role, I said to my own mom, while she was here to offer desperately needed support for almost three weeks when Stella’s tube was put in, “Motherhood will either break me, or make me incredibly strong.” But as any mother knows, breaking is not an option. There is only one choice: strength. And I am slowly but surely building it, though the journey has been a wild one so far.

This weekend, I let worry get the best of me a few times. I wasn’t so strong. After Friday’s appointment, I felt angry. I got down on myself and my ability to get Stella through these eating challenges, and I even updated Cody’s facebook profile status with an insult toward myself–a childish bit of dark humor that got him into some trouble.

I’ve said it to you already but I want to say it here as well. I am sorry about that, Cody. In general, you’ve been incredibly tolerant of an unbelievable amount of emotional upheaval from yours truly, and I really do appreciate it. You’ve been a wonderful source of confidence and support for Stella, as well. When I falter, you step up. And vice versa, though that happens a lot less often because you are the more stable one!

Anyway, we had a big night out on Saturday evening. Our friend Barb, who is awesomeness personified, watched Stella and it went very well. Stella didn’t eat much while we were gone, but Robin, Stella’s occupational therapist, put this in perspective for me. She explained that when babies’ schedules are disrupted,  they regress in some way. It’s absolutely normal baby behavior. Eating happens to be Stella’s most immature skill, so it’s most likely to fall apart in times of upheaval. Besides, Stella downed 200 mls after we got home and went to bed with a fully belly.

Stella had a remarkable day today. She was even more happy than usual! She is now JUMPING in her bouncer/activity center thingee, and her associated delight is infectious! She is rolling from her belly to her back with increased frequency and ease–back-to-belly rolling having been much easier for her for some reason. And (drumroll please)… as of 9pm, she has taken 780 mls from the bottle today! Let me explain the HUGENESS of this number. It is roughly the amount she took in her per day when she had the tube. Only this time, the tube didn’t give her half of that total. She did it all by herself.

I’ve explained this before but it bears mentioning again. When I was pregnant and hadn’t felt her kick in what seemed like a long while, I would start to worry. Eventually that worry got pushy, and needed an outlet, and so I would tell Cody about my concern. And as soon as the words came out of my mouth, Stella would do backflips, cartwheels and perform full routines from Broadway musicals, letting me know that not only was she just fine, but that she had learned a few new dance moves. When the tube was in and we were waiting for her bottle intake to rise so that we wouldn’t need to use the tube, she’d have days where things looked a bit bleak. Cody and I would talk about how worried we were, and not long after, Stella would polish off a whole bottle and we would be completely renewed. And today, just when I’d let worry take over again, she did it. She took 780 mls from the bottle.

Once again, she is telling me that she is okay. She is telling me to have faith in her. She’s telling me that she can do this. She’s telling me, in no uncertain terms, that my worry is misplaced.

Stella, I am listening. You teach and amaze me each and every day. You give me strength. I can’t wait to one day tell you the long, winding story of how, as a little baby, you overcame obstacles and showed everyone that you thrive in the face of challenges. And I’ll eagerly tell you the best part–that you did it all with a big, beaming smile.

Tube-free Stella: Day 8

Posted on by amberhj

Stella finished four bottles today! I believe it was her best day, in terms of how much she ate, since the tube came out.

I weighed her today and it appears she’s lost three ounces since Friday, and weight loss isn’t something a new mom likes to see, but I am truly not worried. Her eating is improving and I have no doubt that she will get to where she needs to be, and soon. Actually, she is where she needs to be right now. It’s a period of transition. She is not used to feeling so much hunger, or driving her own intake. Stella is doing a fantastic job adjusting to a whole new paradigm!

Tube-free Stella: Days 6 and 7

Posted on by amberhj

Weaning continues to go well! It’s hard to believe that the tube has been gone for one week. Though I must say, we’ve quickly gotten used to life without it–even our old nemesis, worry, is fading a bit each day. We look at pictures of her with the tube and marvel at what we’ve all been through.

Stella is very vocal these days. Her hunger cues are becoming more clear, and somehow, more adorable. The main cue is a soft, high-pitched whimpering with a furrowed brow. Though, sometimes it’s loud, disgruntled yelling and angry, crunched eyebrows. I guess it depends on how hungry and/or tired she is.

Today, she polished off two bottles and was sucking on the empty nipple! Her other feedings went well overall. Sometimes she still shows a little resistance, but usually only when she’s tired. In those cases, we offer it to her, she refuses, so we put the bottle down, play or just hang out until she offers more cues, then offer the bottle again. At most of her feedings, she takes right to the bottle. And we were surprised, a couple of times, by how soon she wanted to eat again following a feeding. We see it as a very good sign!

She has been sleeping through the night, for a good nine to ten hours. Actually, she’s been doing this for a while. But now, without the tube, we don’t have to wake up every three hours to load up the pump. We get to enjoy it! My brain is slowly settling down, allowing me to fall asleep a bit easier. The wisdom and support I’ve been receiving from Robin and Marguerite has made a huge difference in terms of my ability to minimize and deal with worry about Stella’s intake. I had my first acupuncture treatment ever today, and I’m hoping that will also help calm my nerves and restore my body’s reserves–it’s still a bit depleted from feeding anxiety and childbirth.

Stella is thriving. She is a joy to be around. We just feel so incredibly lucky. I suppose this whole ordeal has somehow helped us appreciate her all the more.

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 tube is out. I repeat: The tube is OUT.

Posted on by amberhj

And we are leaving it out.

This weekend, I sent Stella’s pediatrician and occupational therapist an email outlining my concerns about the tube and research to back up those concerns. Today, they agreed to a tube-free “trial.” Her doctor said two to three weeks without the tube would be “low risk” given how healthy she is.

We will meet with her occupational therapist tomorrow, and see her pediatrician on Friday. I have been in contact with the Austrian feeding clinic, wired them the registration fee, and they will offer weaning guidance via email as well.

I’d intended on leaving the tube in tonight, and taking it out in the morning. But she yanked it most of the way out tonight, so we went with it. And let me tell you… her tube-free face was a sight for sore, exhausted eyes.

The plan is really quite simple. Feed Stella when she is hungry. When she TELLS me she’s hungry (with her whining). Give her no more than she wants to take. Don’t panic if she doesn’t take much. Wait for her to tell me she’s hungry again, whenever that is, and repeat.

Stella, the feeding reigns are in your precious little hands. Show ’em what you got.

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.