tube feeding

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.

Days 16 and 17: Sweet, sweet progress!

Posted on by amberhj

Stella, reviewing today's blog post. She's a stickler for accuracy.

Stella, reviewing today's blog post. She's a stickler for accuracy.

Today, Stella had 700 mls, which makes it a great day. It’s all part of her overall upward trend in bottle feeding.

I’m excited report is that Stella is no longer swaddled. At all. She is not swaddled when she sleeps, nor when she eats! This is huge! She seems more able to calm herself, which is an important skill–especially in her case, as not so long ago she would get very agitated at the mere SIGHT of the bottle.

At the suggestion of Marguerite in Graz as well as Stella’s dietician, I just  tried adding a bit of sweet baby food (apple and pear, both of which she has enjoyed in recent weeks) to her bottle, to sweeten the formula and perhaps increase its appeal. Well, she just took all 150 mls of this new concoction! We are flying high right now. The best part is that she drank it all down with one hand in mine, and the other hand resting peacefully on the neck of the bottle. How far she has come! I, on the other hand, was able to sit in bed comfortably while feeding her, totally relaxed. How far I have come from the days of standing, shushing, squatting and stressing! Okay, I still get stressed, but not with the intensity and frequency of previous weeks and months.

Interestingly, Stella has moved on from quaint motorboat noises to raspy monster noises. We take turns growling at each other, and it’s great fun. My throat can’t take much more of it, but judging from her persistance and enthusiasm, she is determined to continue this pattern for days on end.

In other Stella news, flood warnings have been issued in our area as her drool output continues to soar! I am using BLANKETS to sop it up. That’s right, blankets. I think tomorrow I’ll put a bucket under her bouncy seat. It’s really quite impressive.

All in all, Stella continues to amaze us in every way.

Day 15: Ugh.

Posted on by amberhj

Today was tough. It’s almost 11pm and her tally is 530mls. She is resisting the bottle. She’ll act like she wants to eat, latch onto the bottle, then quickly pull away from it, and repeat that sequence several times until we give up. We have to honor her choice when she says, “no.”

She is still happy and energetic. We try our best not to worry about tubes and other interventions and hold onto our faith in Stella! Today was a hopeful day, with Obama taking office, and we are trying our best to maintain that kind of positive energy. It’s hard as hell, but we can do it. We have to!

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.

Tube-free Stella: Days 9, 10 and 11

Posted on by amberhj

On a roll.

On a roll.

Stella is doing well. She is teething, however, which is throwing us all for a drool-covered loop. I can feel the bumps, the beginnings of teeth, in her gums. She cries with a bit more intensity and more often, gnaws on Sophie like she’s made of candy, and while she is still her usual energetic self, she seems to get cranky and tired more frequently.

Wednesday, Day 9, was fine. She ate seven times, we think, which is great. However, I began to feel worry rise up again for some reason. And a bit of anger. I figured it was because the reality of Stella losing weight was sinking in, and even though I’d been warned about it, the knowledge made me uneasy. Then I discovered another possible explanation. I realize that this is far too much information, but my period is back after a 15-month hiatus. Ouch. I have PMS. Stella is teething. There you go. Fun times for the Johnson family.

Thursday, Day 10, was better. Stella set a new record for the amount she took from the bottle, about 675 (not that we are keeping exact track–I swear we are not!). Cody made a big discovery. If you offer her the bottle an hour after she eats, she’ll usually take more. We clearly need to offer her the bottle more often–any time she is fussy. To at least give her the opportunity to take more. If she says no, that’s fine.

Today, Day 11, has been a ridiculous rollercoaster of emotions. Stella set yet another record for bottle intake–more than 700 mls! And the day ain’t over yet. However, we had an appointment with her pediatrician today, and let’s just say it was a “lowlight.” (It was for me, anyway–Cody didn’t think it was as horrible.) We were so happy to see that she gained one ounce since last Friday, because we’d been told by two expert sources that babies can lose a bit of weight when weaning. But my heart dropped when I saw that her doctor seemed concerned and eager to get her gaining more right away.

I really like Stella’s doctor. He’s pretty easygoing and I know he only wants what he believes is best for Stella’s health and development, but I have to say that today’s appointment really, really brought me down. As we told him, she’s been eating more and more. Making lots of progress. I told him, as I had before, that it was explained to us that she could lose a little weight then turn it around in three to four weeks as she adjusts. He just smiled and said nothing in response to this. My interpretation of that silence, besides the super awkwardness, was that he is clearly not in agreement. Clearly, he doesn’t have the faith in Stella that we do. In her ability to know what she needs. Her ability to pull through this and eat like a mo fo. I had this unshakable feeling that she was doing so well, but after today’s appointment my old nemesis worry had his hands pressed down on my chest and I had to stop and take more than a few deep breaths to shake him off.

To his credit, her doctor is very collaborative with us. After seeing her weight, he asked, “So what should we do?” I immediately answered, “Give her another week.” I thought it was obvious: give her more time and she’ll start gaining more weight. He had quite another opinion. (Remember, while on the tube and in general, he wanted her to gain an ounce a day.) After looking her over, he recommended that Stella try 30-calorie-per-ounce formula, a jump up from her 24-calorie-per-ounce formula. (Typically, breastmilk and formula have 20 calories per ounce.) Thankfully, he only suggested it as something to consider–he didn’t present it as any kind of mandate. I said that I’d like to hold off on any changes for at least the next week because I believe Stella can do this on her own.

After the appointment, I grew more and more upset about it. It didn’t make sense to me, right as her intake is climbing, to give her such a dense formula that could throw her off and discourage continued increase in her volume of intake. We need to let her learn how to eat more, to want to take in more calories, instead of sneaking them into her. On the other hand, I suppose it’s good to know that this calorie increase is an option that we can turn to if need be, rather than the tube. But deep down in my heart, soul, gallbladder and knee caps, I don’t think such measures are or will ever be necessary. I believe that she can do this. That she will, very soon, eat enough to drive perfectly acceptable, even exceptional!, growth. That she will even be able to transition to the standard 20-calorie-per-ounce formula concentration. Mark my words.

After Stella’s appointment, I spoke with her occupational therapist, and was definitely uplifted. She believes that Stella can do this, and that her progress is great. However, I did detect perhaps some doubt. Perhaps? I’m not sure. She says letting Stella go one more week makes sense. I wanted to hear more flexibility. More rock-solid belief.  “One more week” feels like a lot of pressure! Too much pressure. Too little time. It’s not fair to Stella, who has come so far. Besides, the Austrian doctor said that Stella should have up to four weeks without the tube before her weight stabilizes and starts to go up. I think that Stella should be granted four weeks by all parties involved, because, well, 1.) it seems only right to give her plenty of time to adjust to such a major change in biorhythms before pushing unnatural interventions upon her, 2.) At the five-month mark, she is in the 50th percentile for weight and height which is exactly where she was at birth, and 3.) most importantly, she is showing progress and we need to let her continue it. Luckily, the thing is this: I am her advocate and guardian. I AM STELLA’S MOTHER. So guess what? Stella will be given four weeks to show she can do this, even if I have to get second, third and fourth opinions–whatever it takes.

It makes me angry to think that interventions  like tubes are pushed on babies like Stella just because they aren’t gaining weight on a robot-like trajectory. Because they are not given the time to adjust and find their own rhythm. It reminds me of how interventions are pushed on women during their babies’ births, as if women don’t have millions of years of knowledge about birth built right into their bodies. I am guessing that there are babies out there who have become completely reliant on NG or even G tubes, their quality of life greatly diminished, only because they were never given the chance to prove that they could do it on their own. Never given the time to allow their little bodies to adapt. Yes, some babies and children absolutely need them for survival. But I get the strong feeling that there are also many who have them but do not truly need them. The thought infuriates me, and there is no way in hell Stella will be joining their ranks. Not on my watch. Especially not with this red-alert level of PMS. Watch out, naysayers. Duck and cover, non-believers. You’re about to get served.

P.S.  I can’t wait to say, “I told you so.”

P.P.S. I am so fired up that it took superhuman restraint to not riddle this post with curse words.

P.P.P.S. Screw it. Stella will turn this around within four weeks of the tube coming out and anyone who doesn’t believe that can kiss my ass. Stella can do this. Any other idea on the subject is bullshit. The end.

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.