Toes company

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.

A “grand” day

Stella, ready for adventure. We took a long walk this evening, and enjoyed every minute of it!

Stella, ready for adventure. We took a long walk this evening, and enjoyed every minute of it!

Today, Stella enjoyed 1000 mls from the bottle.

It’s our family’s equivalent of breaking the sound barrier, or walking on the moon. It’s historic and worthy of endless news coverage.

I just fed her. It’s such a lovely, peaceful, fulfilling, loving experience–even if it’s not breastfeeding anymore! We sit in the rocking chair next to her crib, moving in a gentle rhythm. She lounges in my lap, very relaxed, but always winds up with one of her hands gripping the arm of the chair. (It’s adorable, and another sign that Stella likes to be in charge.) She usually drifts off to sleep as she drains the bottle, nestling her head into me. I put her in the crib, admire her for a moment more, then leave the room, feeling a bit like I’m walking on a cloud.

Back down to earth. Stella had about five MAJOR poops today. We definitely overdid it with the prunes in her bottle. Let’s just say that we are scaling back on that. But now we know what to do if constipation ever becomes an issue for Miss Stella Bella. I won’t go on, but trust me, Cody and I can talk AT LENGTH about her bowel movements and never think for one moment, “Oh, this is a weird topic” or “Man, this is getting old.” To us, it’s as interesting and complex and potentially controversial (“You can’t seriously believe that this counts as diarrhea!?”) as politics.

In other news, she is sitting up very well these days. Rolls regularly. Talking more and more–she’s got a really powerful set of pipes. We’re talking operatic. We went to a PEPS meeting today, so Stella got to hang out with about six other babies her age and we got to hang out with 12 other new parents.  Stella and another baby made very similar noises and had on near identical outfits. She held hands with a couple other babies. They each just instinctively reached out for each other chubby paws and held on. It was a sight to see (and hear). Stella was most interested in chewing on her shoe, but still. She had fun and interacted with peers. Fabulous!

PEPS is such a good thing for us. We re-connected with people and were made to feel welcome after being gone from PEPS for a while due to Stella’s trials with her feeding aversion and tube. We also felt a lot more normal. It’s hard to have healthy perspective when you’re isolated. Being around other new parents is hugely helpful–it makes us we realize that we are not alone in our challenges, and that babies all develop at their own pace and that is perfectly, wonderfully okay.

We saw my parents via Skype this evening. They asked if our days with the tube felt far away, if all the feeding issues seemed to have occurred long ago. I had to say, very honestly, “Yes. It feels like another life.”

But we strive to never take things for granted. I still keep a very watchful eye on her eating habits. More importantly, I truly savor my time with Stella. I squeeze the juice out of many of our moments together, then lick the rind to make sure I got all the goodness out.

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

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!

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.

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

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: Days 9, 10 and 11

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

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

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: Day 3

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 1

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!”