awesomeness

The Great Peripheral Awakening of 2011

Posted on by amberhj

A few weeks ago,  I noticed a distinct change in Stella’s vision. Bam! It could not have been more obvious if she slapped me across the face and said, “Damn it, mommy woman! My vision is changing! Give me a god damned hug!”

In short, her peripheral vision opened up in dramatic fashion. Last year, when the esotropia hit the amblyopia fan, I would not have even known that Stella’s peripheral vision was limited if not for the input of our developmental optometrist and vision therapist. Our ophthalmologist never made mention of peripheral vision, which is a sizable piece of the pie in terms of how we take in our surroundings. It affects how we feel, not just how we see. Anyway, I suddenly had clear evidence that Stella’s peripheral vision had been turned on or amped up by the yoked prism goggles, or at the very least she became more aware of it and more tuned in to her surroundings.

How did I know? Walks became more stressful for a while. We live in a bustling urban neighborhood. In fact, it’s been declared the dessert capital of Seattle, with quaint cupcake, gelato, ice cream, chocolate, and pie shops all within a couple blocks. Strolls can be highly caloric, though I like to think we break even, what with the ambulatory mode of transport. For a while during this period of visual transition, when we walked along the sidewalk and approached a crosswalk leading to some sort of sweet destination or none in particular, Stella would get very upset. She experienced panic at intersections. At first I didn’t quite get it or its significance, and in my ignorance probably thought, “Yeah, I wish the cupcake place was closer, too! Mommy needs chocolate NOW!” Honestly, her agitation was too high to downplay and her actual reasons became clear quickly. Her anxiety was sparked by cars approaching from the cross street. She reacted as if the cars (moving in our direction on the cross street, so at a perpendicular trajectory, and I should really have my engineer husband proofread this) were coming straight for us. She lacked the common, seemingly natural understanding that vehicles would stop for us if we just waited at the curb. She was downright afraid they would hit us–even if they were a good half a block away. Stella refused to walk all the way up to the curb to wait to cross, she wanted to stay back from the road, so that’s what we did for a while. Until the fear faded away and she found a new “normal.”

Stella simply wasn’t used to being able to see the cars’ motion in her periphery. The difference was clear as day and her reaction was made my heart race. I knew that a sizable shift was taking place. My gut had no doubt that this was a positive development, and that she was simply noticing the previously unnoticeable, but I also felt her visceral fear and desperately sought to soothe and reassure her. The intersections that never bothered Stella before, with the usual rhythm of cars coming and going, were now somehow very different to her. This was around the time that I noticed, during a vision therapy session with the yoked prism goggles, that she was locating letters on the floor without looking directly at them.

As she has time and time again throughout her 2.75 years, Stella adjusted. She learned that this is the way streets and intersections and crossings work. That cars approach but are not actually barreling for us. It wasn’t long before she incorporated this new broader, more inclusive view as normal. Stella now seems less afraid of most things, in fact. She’s been more and more social and talkative, and increasingly adaptable in general. Her babysitter recently marveled at the fact that most of Stella’s talking to her had been echoing, simply repeating what she’d said, but now Stella initiates and offers her own thoughts. The echoing is drastically reduced if not gone for the most part. We recently had company and Stella brought item after item to Cody’s best friend Tom, engaging him excitedly and chatting away. This is new behavior. Part of it may be simple advancements that come with age, but I think just as much is related to her vision. I have other observations to back this up, like her weeks-long fear of playground structures and other kids on said structures. That’s gone, too, and its disappearance coincided with what I’m calling, as you can no doubt guess having read my witty subject line, “The Great Peripheral Awakening of 2011.” If only the United States’ financial industry could follow suit.

Life is less stressful and more secure when you are aware of your surroundings, I imagine. To me, nothing feels better than seeing her happy. To witness her blooming into this more engaging, engaged, often fearless kid.

Like many people with esotropia, her vision has been focused centrally–like tunnel vision to some degree. We’ve done vision therapy for almost nine months now, and have devoted many recent weeks to use of the yoked prism goggles (20 minutes a day at home, with 10 of those base up and 10 base down) to open up her field of vision. Vision therapy, including our goggle time, will likely end in a few weeks. This Friday, Stella will have an exam with our opthalmologist, and a couple weeks later we’ll head in to Alderwood Vision Therapy see our developmental optometrist, Dr. T, for a progress evaluation. This is a crossroads. I’m still nervous about her amblyopia, and about whether her prescription will increase. But I’ve seen real progress that can’t be denied, including the minimizing of her toe-walking. I’ve been amazed on a weekly basis by the thoughtful, individualized approach and powerful yet nuanced, seemingly subtle but life-changing, results of vision therapy.

It’s been one hell of an eye-opening journey! (You didn’t think I’d given up terrible vision-related puns, did you?) When I look back, I’ve been most struck by my sharp yet sweet two-year-old Stella and her ability to adapt to a new way of seeing the world, a place that to her now feels wider and more welcoming.

Two points of view. One big push forward.

Posted on by amberhj

Big girl

Big girl bed! New purple glasses! Happy Stella.

In the first chapter of John Gottman’s wonderful book, Raising an Emotionally Intelligent Child, my current daily life is illuminated: “Behavioral psychologists have observed that preschoolers typically demand that their caretakers deal with some kind of need or desire at an average rate of three times a minute.” Stella is officially two and a half, 38 inches tall and sleeping in a big girl bed. She has more demands and opinions and upset and glee now than even just six months ago. She’s in some sort of developmental transition period. At times I’m awed and at others, I’m borderline insane. This is a fun but challenging age requiring tons of patience. A tricky age indeed for vision therapy, which requires focus, patience and the tabling of those smaller demands in order to accomplish something she doesn’t fully understand. (I do think she gets it partially, though.)

Stella recently had two evaluations. One with her pediatric ophthalmologist and the other with her developmental optometrist, within about a week of each other. The conclusions by both were encouraging, overall, but quite different. Our intention was to use the results to gauge how vision therapy was going, especially since Stella’s been resisting more. We wanted to figure out whether we should take a break and come back to vision therapy in six or so months, or carry on.

The ophthalmologist determined that Stella’s amblyopic eye is 20/40 but bordering on 20/30. And that her other eye is 20/30 bordering on 20/20. They go with the lowest number, I suppose, in order to crush parents’ spirits–I mean, in order to be conservative and not overestimate visual abilities. (It does make sense.) She very cheerfully told us we could reduce patching from three to four hours to just two hours. I have not told her that we’ve been patching differently than she prescribed. Instead of patching three to four hours a day with an adhesive patch placed directly on Stella’s skin for complete occlusion, we’ve been patching two to three hours a day with Magic Tape over Stella’s glasses lens, and doing vision therapy, which they will hopefully remain ignorant of because I don’t want it to taint their assessment or treatment of me and Stella. It was reassuring to hear her, someone who said Stella may have to patch for a few years, say that patching was effective and that we could reduce it. At the end of the appointment, I asked her, “So, is there anything else we can do for Stella?” She hesitated for a split second and then said, ‘No. It doesn’t matter what they do while patched.’ And that was that.

Hold onto your hats. In our evaluation with the developmental optometrist, Stella showed 20/20 vision in both eyes. This is huge, and I haven’t really come to fully believe it yet–though I saw it with my own 20/20 eyes. It took Stella a tad longer to see the targets with her amblyopic eye, but not too much longer. She could see the chart’s 20/20 line far away and up close, with both eyes. Sometimes answering instantly, when the smiling doctor playfully sang “quickly quickly!” Why there is a discrepancy in performance between the two appointments, I’m not sure. The testing procedures and atmospheres were certainly different. Mainly, more time was taken at the optometrist, with more nuanced testing done.

Randot Stereo Test

Randot Stereo Test

While I was stunned when Stella identified the teeny tiny symbols (bird, cake, etc.) indicative of 20/20 acuity, I was just as thrilled when, during that same optometrist appointment, Stella was able to see three 3D circle images  in the top left section of the chart (the Randot Stereo Test at left). Last time, she didn’t get any of those and saw only one thing pop out at her–the 3D character in line A in the bottom portion of that left panel. Alas, she still only got one in that section. I suspect that her attention span complicates this, and the doctor did acknowledge that it’s possible Stella can see more than she is able to indicate. But perhaps not. As I’m known to say these days, after over-analyzing some Stella-related concern to the point of boring even myself, “Who the hell knows!?” I’m just grateful for the improvement.

The ophthalmologist’s 3D testing was much faster and simpler. Instead of a multi-layered chart with different lines measuring different degrees of stereoscopy, they used a single large image of a fly–the Stereo Fly test, which I learned about on Strabby (more on Sally and her blog in a minute). Stella seemed to try to pet the insect after some coaxing. They nodded approvingly. I wondered what Stella saw and thought and wished she could describe it to me.

I was crestfallen to hear, at the ophthalmologist’s office, that they saw no improvement in Stella’s vision. Yet they seemed incredibly happy with how she was doing. They noted that the acuity in Stella’s amblyopic eye is and has always been above average for her age. Her other eye’s acuity (with glasses, of course) is way above average. They said her vision was developing very nicely.

Both doctors concur that the eye crossing (esotropia), so far at least, has been eliminated by the glasses. Perhaps with help from vision therapy, as I believe the eyes did cross in exam with glasses earlier on in this journey. I haven’t seen Stella’s eyes cross in such a long time as they are aligned when she wears her glasses, which is all the time, excepting bedtime, bathtime and her weekly half hour of swimming (prescription goggles may be in her future) and occasional fits of toddler rage. Stella’s eyes did not cross in either of the recent exams, even after the typical attempts to break alignment. This is huge, often overlooked by myself and Cody, and worth celebrating with lots of wine. I have so many pictures from her babyhood in which I can now immediately detect the not-so-obvious difference in her eyes’ positioning. We also have photos and videos from her ER visit at 18 months of age, during which both eyes were severely crossed (seemingly out of nowhere, though again, we realize now that they’d been slightly misaligned, frequently but thankfully just “intermittently,” her whole life). We keep the ER images as a reminder of why we’re doing all of this. It’s very difficult for me and Cody to view them, because she looked so vulnerable and clearly couldn’t see anything except foggy blurs. But they’re powerful appreciation boosters, and quickly give me perspective when I’m stressing about Stella’s refusal to go to bed without getting up ten times to talk about Papa Bear’s porridge or flamingos or other topics meant to engage me and delay the train to Snoozetown by a good three hours. (And breathe!)

The bottom line is that her eyes–their refractive power and degree of slight astigmatism and as a result, their acuity–are different. It’s refreshingly simple. The two doctors agree on this. It’s the discrepancy between the two eyes that has led Stella down the path to amblyopia.

Both doctors, seeing Stella through their respective lenses, were very positive. Through the course of both appointments, I was amazed, disappointed, encouraged and informed on several levels. I walked away from these evaluations with some real reassurance, but also some points to ponder endlessly and inanely. Stella’s degree of stereopsis (3D vision) has improved wonderfully in just two months, but further improvement is needed. I wish I’d questioned the ophthalmologist more on their take on this. Do they think Stella has normal 3D vision because she tried to pet the fly (I think we called it a bee)? Are they settling by assuming, “at least she has some 3D vision,” or do they genuinely think she has age-appropriate stereoscopy? I wondered aloud to the developmental optometrist: When Stella has moments of experiencing 3D vision, does it freak her out and lead her to suppress her amblyopic eye? Our optometrist said that yes, this can happen. Which may explain why Stella frequently says, “Mommy I need a break!” But, the doctor explained, if I’m around, serving as Stella’s anchor and emotional safety net, it shouldn’t be an issue. For that reason and many others, I am so happy that I get to be with Stella during this time in her life. I get to be there to eat the pretend lunch she prepared and soothe her when her vision acts up (though I never really know for sure) and observe all the little things that indicate what she’s seeing and experiencing–which prove helpful to this process but might otherwise go unnoticed. I see how her peripheral vision is really good now. I see that puzzles are a breeze. I see her push her left lens closer to her eye. I hear her say things about her eyes that give me hope. I’m fortunate to have this time. Happy to take all (okay most) of it in.

Children's Eye Chart

These are the symbols Stella identifies.

These exams were more than just “let’s see how she’s doing” meetings. This latest evaluation, particularly with the developmental optometrist, was a crossroads. I was nervous. I feared Stella would feel my heart pounding as she sat on my lap in the big black exam throne. We came to this point of decision-making because it’s not only been increasingly tough to get cooperation from Stella for vision therapy at home, but also in the office at times. Some exercises are much more well received than others both at home and in the office. Some appointments are simply better than others and I still believe that she gets a lot out of all of them. At home, it can take over an hour to get 20 minutes of therapy done. (I find that time hard to fit in comfortably–but I suspect other, more normal and organizationally proficient moms might do a better job of this so I really don’t want to deter other families who have a child of two and a half who might greatly benefit from vision therapy.) We’ve been told to do the exercises earlier in the day, when Stella is less tired and there is more natural light, because we tended to shove them in at the end of the day. After a glass of wine, I’m a much more effective and relaxed vision therapist. But I am slowly getting better at overcoming my dread of possible screaming and infinite dawdling and learning to break therapy up into small chunks. A quick matching game (with the patch) before lunch. Sticking skewers intro straws while patched and eating dessert. That sort of thing. Did I mention that I’m not very organized? If The Container Store had a blacklist, I’d be on it. Though I do have a big green plastic box in which I dump all of our vision therapy games and tools, which is a true Martha Stewart moment by my standards.

In the end, due to her gains in 3D vision and acuity as witnessed in the optometrist’s office, and even the ophthalmologist’s thumbs up assessment of Stella’s visual status, we’ve decided to continue vision therapy for another few weeks, at least. With an emphasis on use of the yoked prism goggles, which merit an entire post (coming soon), and more physical exercises that engage the vestibular system and body as they relate to and inform vision, from what I gather, helping Stella’s brain devise a more accurate map of space and her place in it. Stella enjoys those activities more, anyway. Bouncing, rolling, running? She’s in! Donning red/green glasses and slowly scanning the kitchen floor for matches, MFBF style? She’s so done with that particular game. She used to get 15 matches in one shot, now I’m lucky to get five reluctant matches worth of cooperation and sometimes she refuses completely and we both end up in tears. So I have to roll with it and be more flexible than ever. Putting those cards on the wall over the couch and letting her bounce around while searching does help make it more novel and fun. But I’m not sure that exercise is worth it anymore. Stella’s vision therapist agrees and is going to move us along to some new MFBF exercises to build upon this work and mix things up. We really like her–she’s had letters thrown at her, cards torn out of her hands, and shrill, blood-curdling screams shatter her eardrums, yet she keeps a cool head at all times. Me? Not so much. I sweat during those appointments to the degree where I stash deodorant in the diaper bag.

So we are at the beginning of a big vision therapy push. Can I help Stella get to the next level? I sure hope so. We’re going to do our best. We’re seeing progress and it would kill me to break now especially with the promise of yoked prism goggles just starting to be a staple in her vision therapy buffet. If a break is needed after that, fine. But if so, we’ll be back at vision therapy as soon as Stella is ready. Do kids become more cooperative at three? Good lord I hope so because caring for a two and a half year old is like playing with fire. I’ll tell you what, though. I appreciate Stella’s strong will (the screaming? less so) and don’t blame her one bit for resisting patching and exercises, the purpose of which she doesn’t comprehend. Between that and patching, we ask a lot of her. She does amazingly well for her age, and knows her numbers, shapes, and letters better than many kids twice as old, which has helped make a lot of exercises possible. As they say where I’m from, she’s wicked smaht. Don’t even get me stahted!

It’s been twenty seconds since I’ve heard, “Mommy? MOMMY!?” So another Stella need will arise now and I must go. But first a shout-out to our comrade Strabby, who recently had a huge vision therapy breakthrough using a lot of the same therapeutic tools that Stella employs. It is so fascinating to hear her account of her first glimpses of “3D-ish” vision–I bet that’s what Stella was experiencing when she said, “I can see with both eyes!” Strabby gives me a better idea of what Stella might be seeing and going through, which helps keep me motivated. Thank you and congratulations, Strabby Sally. Keep it up. Lead the way to 3D-ville, baby! We’re right behind you!

Stella is two.

Posted on by amberhj

Stella is two. She wishes she lived at the beach.

Stella is two. She wishes she lived at the beach.

Stella turned two years old last week, during our beach vacation. She’s still singing happy birthday to herself, talking about birthday cake, and reminiscing about blowing out candles and good times with her “Happy Birthday balloon with smiley faces.” The balloon was accidentally released into the sky, but the sight of it drifting to ever more impossible heights pleased everyone, including Stella, and somehow seemed appropriate and celebratory. I know what you’re thinking. “How nice!” and “Hopefully no sea animals were killed by the balloon remnants.”

So Stella’s two now. All of sudden, she talks in complete sentences, giving crucial information, and answering questions. (Yeah, she shouts commands, but mastered that long ago. I guess they’re just more specific now.) Though she can string words together like a champ, it’s the short one-liners I enjoy most. Must be the advertising copywriter in me. Some examples of dialogue:

Me, in response to her crying: “What’s wrong?”
Stella: “My belly hurts! And my knee.”

or

Me: “Where are your glasses?”
Stella (walks over to the table, where her specs sit): “Right there!”

or

Stella: “I’m running! I’m running down the street!”
Me: “Yes you are running! Running down the street!”

or

Stella (returning to room after leaving for 5 seconds): “I’m BACK!”

Now that Stella is two, she treats her glasses with more care. She usually takes them off with two hands and carefully folds them before handing them to me. We switched to using magic tape over her right lens, instead of a solid patch, at her ophthalmologist’s suggestion. That’s made patching harder, I think because her right eye is still getting input but it’s really bad input, instead of being totally blocked out. But overall, she’s patching like a champ. When she peeks over the top of the glasses, I say “No peeking,” and that usually stops it at least for a little while. I use screen time as the “patch game”… so if she peeks while watching say, “Here Comes Science” DVD, I say “No peeking,” and if she peeks again, I turn off the TV and say, “You’re peeking so the patch game is over.” It works pretty well! Stella’s doctor was very helpful in coming up with strategies like these.

Stella really likes to nap. She asks to nap often. I’ve heard patching causes strain that can make kids cranky and tired. Plus, we went on a long vacation that involved a three-hour time change. In any case, this kid knows when she’s tired, and I totally appreciate that.

Her raw/giant-carrot-chomping phase seems to have waned, but Stella is now eating lemons like they’re apples, waxy rind and all. Her current favorite foods are: chocolate ice cream, mac and cheese, vanilla ice cream, extra cheesy mac and cheese, sliced almonds, peaches, cheese in any form, ice cream, cottage cheese, bagels, and carrots. And ice cream and mac and cheese. We are so alike in some ways.

We gave her a really cute wooden play kitchen center thingee for her birthday. She loves it–washing dishes and putting lids on pots, turning stove knobs, and removing the faucet. I’ve been letting her play with dried beans and bowls and my large kitchen utensils for a while. She’s really kicking things up a notch now and pretending to cook. Though she hasn’t made anything but mac and cheese yet, I expect her to branch out soon, menu-wise.

Stella is completely, 110% obsessed with the aforementioned “Here Comes Science” DVD featuring music videos for science-centric songs by They Might Be Giants (TMBG). Against my idealistic intentions, I let her watch it every day, because it’s an effective way of launching the “eye patch game” (the game? wearing her patch). During vacation, she watched it two or three times a day. She watched more TV that week than the rest of her life combined. She was teething, jet-lagged, patching, and got a fever and gastro bug, so I just let her go nuts with it (though at times I really did just have to start cutting her off). It was all worth it because now I get to hear appropriately bespectacled Stella belt out scientific yet catchy gems such as:

“ROY G. BIV is a colorful man!”

“STEEEEEAM is a GAS!”

“Meet the elemeeeeeents!”

She is fiery and fabulous and has me by the balls. She’s sweet and strong and fast as lightening. She’s a ruthless tyrant and cuddly snuggler. A monkey and a mastermind. She’ll read book after book after book until the cows come home, then happily “moo” right along with them. I may be diagnosed with severe OCD for admitting this, but I say, mostly in my head but sometimes out loud, at least hundred times a day in the exact same way, “I sure do love my Stelly girl.” I really, really, really do.

***

For your enjoyment, in celebration of Stella’s 2nd birthday, here are the “music videos” (do they still call them that?) corresponding with the lyrics above:

ROY G. BIV

MEET THE ELEMENTS

SOLID LIQUID GAS

I’ll post a birthday pic

Three cheers for Zander! Oh yeah, AND HIS MOM.

Posted on by amberhj

Today isn’t just another Tuesday. It’s a very important day. Today, February 9, 2010, is the day Alexander (Zander or Zandy to those who love him) left his G tube behind. For good! I can’t tell you how huge this is.

Due to one of the most severe cases of frank aspiration ever seen at Seattle Children’s Hospital, Zander required a feeding tube for a year and a half (very close to his entire life). Early on, it was discovered that most of the milk he swallowed ended up in his lungs. He started off with an ND tube (like an NG tube that goes further down, indicated only for short-term tube feeding), but it soon became clear that a longer-term J-G tube was needed. At that point, he couldn’t handle a G tube, inserted into the stomach, because food that high up in his system could be regurgitated and cause aspiration. The food had to go directly into his intestines, via G-J tube, to avoid the threat to his lungs. (Much later, though, he transitioned to a G tube.)

Any type of swallowing put sweet Zander in danger. When he got a mere cold, respiratory distress was pretty much inevitable. It was a terrifying journey for the whole family, with a most uncertain destination. They didn’t know where it would lead. They were stuck, in so many ways. Tube feeding has a way of cramping one’s mobility and social life and sanity.

Then it happened. Late last summer, Zander passed a swallow test. Finally. It was his fifth one. He’d failed the four prior, because he was still aspirating. Amazingly, he at last demonstrated the ability to swallow. But could he really EAT? Did he have the willingness? Not at first. He needed to build oral motor skills. He needed to learn to not be afraid of food. He needed to feel hunger, which tube feeding obscures or annihilates. He still had a road ahead of him. So they forged ahead. Unbelievably, there were just two occupational therapy sessions. The work was done at home. They made food “sexy,” conscious of being happy when they ate and letting Zander see them happily eating. They allowed him to touch, and — until he got teeth — gum at flavorful food. They dipped his pacifier into gravy, sauces and juice. Still uncertain, they were hopeful and proactive, even after all they’d been through.

Slowly but surely, Zander began to eat. At first, just a sip from a straw or a bite of a cracker. Breakthroughs seemed to happen when they were behind schedule, when hours had passed since his last tube-fed meal and he was overdue for his next one. On such an occasion, he grabbed his mother’s Jamba Juice and guzzled three ounces in what seemed like mere seconds. Confidence and ability grew in tandem. The percentage of his diet enjoyed orally grew ever so slightly over time, until it hovered at 50%. (That’s as far as Stella ever got, by the way.) That’s when Alexander’s mother, based on research and gut feelings and a few supportive voices, took an incredibly brave but wise leap of faith. She just stopped. She stopped using the tube, and let Zander take flight.

Thirty days later, that would be today, Zander had a check-up with his wonderfully thoughtful, appropriately cautious, yet totally reasonable pediatrician. She saw that since commencement of weaning, he’d gained a bit of weight, and grown taller. She looked at him and saw a happy, healthy, NORMAL boy. And she said that the tube could go. Zander’s mom removed it this afternoon. She still feels a bit dizzy. Makes sense, though. Her world is  spinning, in the best possible way.

Yes, I’ve met Zander’s mom and I liked her instantly. She’s got wisdom and laughter in her eyes. Yep. A killer sense of humor, and a shrewdness that could put any seasoned lawyer to shame. So, as big a day as this is for Zander, I find myself just as happy, if not more so, for her. She got him here. Her strength. Her determination. Her unwillingness to settle. Her ability to take a hit and get back up, in the face of anxiety. Oh, the anxiety. She didn’t let it stop her, and that’s something a lot of parents could learn from these days.

She’s been to hell and back, probably saved her kid’s life more times than she can count, yet she’s got enough energy left to fight for other little ones like Zander. She’s become their much-needed advocate. She’s already inspiring others, and pushing for change. Better care is needed for kids on tubes, a technology that is outpacing our understanding of its impact on children and their development. And, as she and I both learned, there is no end in sight. Kids and babies whose core issues are resolved remain tube-fed for years, because no one knows how to wean them. So few in the medical community are brave enough to at least give them a chance to eat on their own. Well, she’s stepping up to the plate.  But that’s just business as usual for her. I’m going to support her however I can.

Zander now has two “belly buttons”, the last evidence of his medical journey. It’s a new, tube-free world for this family. A time of joy and nervous transition to an alien concept called “normality.”

The next time your child savors mac and cheese, or any favorite food, take a minute to appreciate it. And raise your glass–hold it extra high–for Zander and his mom!

(Much respect.)

Steps in a new direction

Posted on by amberhj

I am so into recycling that I am making Stella wear my old overalls.

I am so into recycling that I am making Stella wear my old overalls.

I haven’t posted in so long because I’m lazy. But also, I needed to take a break and discover a new direction. So, this blog will probably change, and soon. But all the helpful resources pertaining to feeding issues will remain, and I hope that they continue to help and comfort people.

The thing is, Stella’s bottles are no longer thickened. She is off both of her reflux medications, the Ranitidine (Zantac) discontinued two or three weeks ago with no issues. And she eats plenty. All the mental and physical energy that went into feeding Stella, and worrying about feeding Stella, needs to go elsewhere now. I’ve been a bit stuck as a result, but figuring it out, slowly.

I’m working on an article for AOL. I’m doing a small writing project for one of my past employers. I joined a book club. I’m cooking more. I’ve planned a little family vacation for August. We are finding a new rhythm. Speaking of which…

Stella earned her “early walker” status last week. She will be eleven months old tomorrow, and I saw her take her first steps on her ten-month birthday. Though Cody shrugged when  I told him that, because he’d seen it before. Why he didn’t mention that humungous event is beyond me. Best guess is that he felt guilty over having witnessed it with out me. In any case, she is now literally off and running.

I took her to University Village yesterday, and instead of walking past the astr0turf-clad, todder-friendly playground, which previously had all the relevance of a space shuttle launch pad, we stopped, went in, and Stella proceeded to waddle-jog around, exploring all the ground-level gadgets and approaching everyone with aplomb. At one point, two toddlers (clearly playground vets at 18-24 months old) were standing alongside the lowest tier of the series of platforms that lead to the top of the slide. Stella jaunted up to the step, brushing between them and gently nudging them aside. With a wide stance and an even wider smile, she placed both hands on the platform, and turned to smile at each of them before cheerfully smacking the platform twice. They then did the same. It was as if she has bellied up to the bar and ordered a round for everyone. “This one’s on me, gang!”

Speaking of another round, it’s time for my second glass of wine. In my own personal experience, it’s one of the few upsides of formula-feeding, and I’ll take it.

P.S. Whoever says formula-feeding is convenient and time-saving is HIGH!

Well nourished

Posted on by amberhj

Super Stella can eat a pancake in a single bite (practically).

Super Stella can eat a pancake in a single bite (practically).

Sometimes I worry (shocking, I know) that Stella and I don’t venture out often enough for grand adventures. You know, to the Woodland Park Zoo or Pike Place Market. But then I turn on the vacuum or open the refrigerator door, and she goes absolutely bonkers with joy and excitement, and suddenly I’m certain in the knowledge that she gets her share of thrills right here at home.

The fridge is by far her favorite destination at the moment. She’s developed a particular fondness for a large bottle of light dijon dressing. If there happens to be some Cava chilling in there (which is often the case), she’ll  make a beeline right toward it, and I’ll smile and think to myself that we are incredibly alike.

Food and drink remain a big focus of our days. But a shift is underway–a very healthy shift in thinking and eating. Stella is eating plenty of food via bottle, spoon and finger. I think–I really, really think–that she has finally convinced us to chill the F out. Really. This is big, and it’s about time. I mean, on how many occasions has she rebounded from eating “less than usual” to eating “more than usual”? Tons. How many bottles has she drained? Countless. How many Cheerios and pieces of tofu has she stuffed in her mouth? So many that her grocery bill is starting to rival mine and that is really saying something, people.

I purchased a horribly edited but very helpful and well intentioned book called Super Baby Food by Ruth Yaron. The purple tome has helped me change Stella’s diet for the better (and by “better” I mean healthier and fresher). The book is frustrating on one hand, because it confusingly cross-references itself to the point of eye-crossing ,book-hurling annoyance, but it’s also empowering in that, by patiently plugging through key parts of the book, I’ve established a real plan for giving Stella a complete, incredibly nutritious, age-appropriate diet. Until recently, I really felt like I was just winging it. I had the feeling I could do better. Also, Stella has enjoyed three nasty colds in as many months, so I’d been wondering if there was a way to boost her immunity, even just a little bit, through her diet.

In a nutshell, the book encourages you to make baby food yourself, using lots of “super foods”–not just fresh fruits, vegetables, grains and legumes, but with those that are especially jam-packed with nutrients. At the heart of Super Baby Food is Super Porridge, which should constitute the baby’s biggest and most hearty meal of the day. You make it by throwing grains into a blender (I’ve been using brown rice and millet this week), then cooking them in water. You make a few servings at a time and put them in individual containers in the fridge. Come meal time, you take out a serving of Super Porridge and add stuff to it. In ice cube trays, I’ve frozen portions of pureed fresh vegatables and fruits of the “super” variety (including kale and papaya). So I pop one or two of these veggie/fruit cubes in the porridge and microwave briefly, and mix it up with a bit of flaxseed oil and brewer’s (nutritional) yeast. Every other day, I add an egg yolk to the porridge, per the book’s suggestion. On Sunday, I hardboiled four eggs and put them in a sealed container in the fridge. I eat the egg white as I mash the yolk before dumping it into Stella’s porridge. And the shocking thing is, she likes it. She really really likes this porridge stuff. Her favorite seems to be Super Porridge with a cube of mashed avocado, a cube of mashed papaya and an egg yolk (the flax and yeast are givens). I make an effort to prepare the porridge in a way that is appetizing. I’m not down with making her food that is nutritious but unappealing–what fun is that?

According to the book, yogurt has enormous health benefits (big revelation there, right?) and should be the base of one meal per day. I haven’t full-on incorporated this into our routine yet, because Stella is not supposed to have dairy until one year of age. However, I do stir some rice yogurt into her morning fruit meal, and I plan to grab some soy yogurt at the grocery store. I’ll probably do my bowels a favor (I owe them one after months of Pagliacci Pizza, RoRo’s BBQ and Mighty O donut dependence) and stock up on some Greek yogurt for myself.

Super Porridge may sound a little crazy and, well, it is–when you compare it to our old mode of using Earth’s Best jarred baby food and cereal (which I still use here and there as I am not going to become militant about what Stella eats and want her to enjoy a wide variety of foods). Super Baby Food isn’t exactly “simple.” But the level of effort wasn’t too excruciating this first week. I get the sense that in another week or two, I’ll be in the flow of it, making only small batches here and there. I expect this plan to become a habit that doesn’t require the current level of thinking and deciphering. Besides, I feel so good about feeding Stella this way. I love knowing that even on days when Stella doesn’t eat much, each bite she takes is off-the-charts nourishing. At times I still want to chuck the book out a window because it’s such a convoluted read, but I am really grateful for the hearty bits of wisdom nestled within pages full of rampant bolding and italics, near-criminal use of indentation, and random tangents and unneccessary side notes. All told, I love the book and how it’s enabled me to boost the quality of Stella’s daily meals.

I am finally taking better care of myself. As I plan her meals in advance,  I find that I am doing the same for me. I eat when she eats. We eat together, and though feeding her used to feel like a dreaded chore, it’s becoming more fun. I wore earrings and a skirt yesterday, and felt somewhat cute for the first time in ages. Nothing fancy, mind you. But I brushed on a bit of my beloved Jane Iredale SPF 20 Warm Silk mineral foundation, thought for more than five seconds about my outfit, and even accessorized. I don’t want to get ahead of myself, but I may shave my legs soon. (It’s blond and fine so not very visible. At least, that’s what I’ve been telling myself.)

Maybe it’s because we visited Stella’s OT last week for pointers. Maybe it’s the weather or my improved attitude rubbing off on Stella. Maybe it’s a growth spurt or her new homemade super food. Perhaps it’s all of the above. For whatever reason, Stella is chowing down. She seems to enjoy eating more than ever before. I’ve said this before many times. But maybe now, after all these months, we can stop the counting and obsessing and begin a new era of enjoyment. It would be as nourishing for Stella, and myself, as anything I can put in a bowl or bottle.

Bon appetit!

Nine months

Posted on by amberhj

Stella's a little shy in the pool--at first.

Stella's a little shy in the pool--at first.

So, Stella has been outside the womb for just about as long as she was in it. This seems like a big milestone to me and my uterus.

Stells (that’s not a typo–it’s one of our nicknames for her) celebrated her nine-month birthday on Sunday. The occasion was marked with a Waterbabies class (with a stop at Bellevue’s Downtown Park beforehand), and a walk to Gasworks Park. The next day, we went in to Dr. N’s office for her nine-month check-up. Ah, yes. Time for those dreaded percentiles.

Cody and I let out a sigh of relief and our shoulders dropped about six inches upon seeing the number on the scale: 19 pounds, 2 ounces. We knew that if she wound up at 19 pounds or so, she’d be at or above the 50th percentile for weight. I know, I know. It doesn’t even matter. One look at Stella tells you how happy and healthy she is. But we’ve got a nasty, lingering case of feeding aversion/tube-induced PTSD  and are grateful for any extra reassurance.

After the measurements were taken, the doctor came in, shook our hands and started tapping away on his touchscreen. He’d plugged in Stella’s stats in order to show us her growth curves, charted electronically.

“Look at this beautiful curve, ” he said, highlighting the fact that Stella’s weight was right between the 50th and 75th percentiles, just as it had been at her six-month check-up. He continued, with a bit of sing-songy positivity in his voice (which I loved), “And this curve looks great…” We saw that, for length/height, she was in the 75th percentile, just like last time. We were flying high.

Then, pointing to a dot, adrift above the highest percentile curve, he noted, “And this is how smart your baby is.” He was kidding, of course, but her head size was clearly “off the charts,” as they say. Last time, it’d been on the highest curve. Her head circumference has risen by a few percentiles between each check-up apparently. It’s not uncommon, really, and not a concern. Unless it keeps going, of course. In which case learning to walk will be a lot more challenging.

In short, Stella is thriving. Her doctor told us to feed her solids three times a day (I’d limited it to two, fearing that she might not take enough from the bottle otherwise), and to stop tracking how much formula she takes outside of that. He also suggested changing her formula to the normal 20-calorie-per-ounce concentration, which we have done. At one point, in the wake of all this, I stuttered, worriedly, with what I’m sure was a look of concern and confusion, “Um, so, like, h-how much f-formula does she NEED now?” The doctor kindly told us that we’d worried enough, and that we could stop now. Worry had become like air to us. So we are pretty much adapting to life on a new planet.

He also pointed out that, in a way, we are allowing Stella to wean herself off of the Ranitidine by not upping the dose as she grows. It reminded me of the progress she’s made int hese last three months. She’d been on two reflux medications until a couple months ago. We’ve lowered the amount of Simply Thick we put in her bottles, with the goal of soon weaning her off of that, too. She is back to the “normal” caloric density for formula–just like I’d predicted (boldy, it felt at the time) in her early tube-free days.

And that brings me to my point. So often, these days, when I look at Stella’s impossibly beautiful, beaming face, I can’t help but cry. Especially when she laughs. I remember, somewhere in the dark, dark days of December, bawling at most commercials. Our situation and those post-partum hormones were brutal–even bland Sleep Country USA ads opened deep, previously forgotten psychic wounds, apparently. But there was something especially gripping about the “Peace on Earth” spot for Pampers. Those soft, gorgeous baby faces! Those cherubic, chubby cheeks! Yes, those cheeks. Those cheeks, free from evidence of medical intervention. Those perfect baby lips, moving as if the baby is nursing in her dreams. They tormented me. Because to Stella, eating was a nightmare, not a dream, and our view of her angel face was obscured by two kinds of tape and a long yellow tube. Those babies were chubby and sleeping in a sprawled out fashion–not being force-fed while sleeping swaddled and strapped into a giant foam wedge. That commercial just seemed cruel to me at the time.

I go into her room and look at Stella every night before I go to sleep–despite that fact that by doing so I risk letting our super creaky floor wake her up. I have to do it. How could I miss out on the most beautiful sight imaginable? It is a triumph, a joy and a reminder to be grateful. I just watched the Pampers commercial again. And I have to say, Stella would fit right in with that bunch of sleeping angels–those arrogant bastards.

Firsts and fiascos in Boston.

Posted on by amberhj

Wow. We just returned from Boston and I honestly don’t know where to begin. It was Stella’s first plane trip and travel experience. In fact, the  ordeal adventure was  loaded with firsts–for me and Stella Bella.

1.) Stella crawled–really crawled–for the first time.

This is big. As elated as I am that Stella triumphantly reached this big baby milestone, I am more excited that it will cut down on frustration-induced whining by at least 85%. After pushing herself backwards into corners and  under furniture for weeks–wailing the entire time as the object of her mobile intentions got further and further away–she finally figured out how to move forward. If I leave the room, she can now follow me instead of just crying about it. We haven’t done much baby proofing, aside from plugging a few outlets. I’d better get on that before Stella chews on a bottle of tub and tile cleaner.

During our time in Massachusetts, Stella spent a lot of time watching my sister’s dog, Bosley. She  clearly loves and adores Bosley, who is more human than canine, known to sit on his butt, upright on the couch as you or I would, with one paw resting on the armrest. I’m pretty sure he asked my dad for the remote one evening. So perhaps Stella was inspired by this noble animal’s ability to get around on all fours. Or perhaps she realized that her mom is far too lazy to bring toys to her and that she better figure out how to get them herself. Either way, the paradigm of our daily life has shifted.

2.) Stella met her first- and second-cousins for the first time.

Stella loves other babies and kids. She watches them with rapt attention, abandoning whatever it was she was doing in order to observe. She’ll place her hand on theirs and stare deeply and unblinkingly into their eyes. When she met her cousins James (5 years old) and Chase (3 weeks old), she was in complete awe of them. Perhaps she felt the familial connection. Or maybe because we made a big deal about their meeting, she picked up on the importance of it all. James would put his face right in front of hers, and within two seconds, she’d smile so big and warm that it had the effect of the sun coming out from behind a dark cloud.

The sight and sounds, at a cook-out hosted by my parents, of Rudy, Marley, Owen and Riley (my cousins’ children) were a feast for her giant eyes and alert ears. We took pictures of them all together, and in every one that I snapped, she is staring at the kids around her, taking mental notes, clearly fascinated by their advanced ways. In my favorite picture, Riley and Owen are smiling at Stella in such a sweet way. (If we hadn’t left our SIM card in my parents’ Wii, I’d post the photo.) I couldn’t help but wish that she could see them all on a regular basis. Stella seems very social, and unfortunately, her social circle is limited to yours truly 95% of the time. We’ve started going to the park almost daily where she exchanges smiles with other babies and kids, and I exchange awkwardness with other moms.

3.) I bared my ass to fellow passengers while changing Stella’s diaper on my lap. (Yes, MY ass.) Another first.

The return trip was  FAR more memorable than the flight to Boston. Twenty minutes after take-off, a man–sitting just a couple rows ahead of us–had a heart attack. We watched as several doctors worked frantically to save his life. (A doctors’ conference in Boston meant that our flight was packed with MD’s.) Theyhung an IV from the overhead compartment, performed CPR in the aisle, and even broke out the defibrillator paddles. After an emergency landing in Syracuse, we sat on the ground for two and a half hours. Shortly after take-off, with my legs aching from sitting so long with Stella on my lap, I urgently needed to get up, so I thought I’d change Stella’s diaper while I was at it. We headed to the rear of the plane and entered the only vacant bathroom. It was about the size of me, and I instantly realized that there was no changing table. I  had to pee like you read about, so I went ahead and changed Stella’s diaper on my lap while I relieved myself.

About mid-way through the change, someone opened the door. Yep, I’d neglected to lock it. I immediately closed the door (“hello lighting!”) and proceeded with the diaper change as if nothing had happened. Honestly, I don’t recall being alarmed or embarrassed at all. I calmly but quickly grabbed the slider handle and locked the door. The person on the other side, had they actually looked at my face and I hope and assume they didn’t (since the adorable upside-down face of the bare-bottomed baby on my lap was likely an effective distraction from my own face–or ass for that matter), would probably have been rather disturbed at my lack of alarm. But after you give birth without drugs, completely naked and pooping all over the table in a squatting position (deepest apologies for that visual), it takes a lot to phase you. I am fresh out of modesty. The last remnants of it were discarded with the placenta.

4.) For the first time, I truly and genuinely realized that, yes, Stella is still tough to feed. It’s not just me being insane.

It’s nothing like before, but still incredibly inconvenient. I realize that this issue is probably hard for other people, even most other new parents, t0 really understand. Stella doesn’t have a tube anymore. She looks and is happy and healthy. So some may think that Cody and I are overly protective or nutty when we take Stella to a dark quiet room to feed her or say things like, “We can’t go to that event/outing because Stella won’t eat if we do.” I sometimes sense that people are rolling their proverbial eyes and thinking to themselves that I am the problem. Granted, I’m extremely neurotic and defensive about it, my mothering confidence having been all but obliterated by the feeding aversion, though it is slowly being rebuilt like Chicago after the fire. But the trip armed me with examples that prove my point about Stella’s persnickety and impossibly annoying eating behavior.

One morning, Cody was giving Stella a bottle upstairs in the grandkids’ room, at my parents’ house where we stayed. It’s an adorable bedroom outfitted with a cute crib and bunk bed, complete with peace sign sheets. As usual with feedings, the room was dark and Stella was in her luxurious, super-duper-soft sleep sack. All the pieces were in place. They were in the middle of the feeding when my father came upstairs and said, somewhat loudly, from the stairs, “Hey Amber! Corinne wants to know what your schedule is for today.” Stella jerked her head and the feeding was over. As is always the case when a dog barks or a pin drops during a feeding, she would not pick up where she left off and continue. GAME OVER. Yep. It’s that easy to throw off her eating.

Stella completely refused to eat at Auntie Emily’s house. On two occasions, she had gone a good five hours without eating and was overdue for a bottle. We took her into her cousin James’ room, closed the door, pulled the blinds, put her in her sleep sack, sat down and put the bottle to her lips. No dice. Stella’s head was darting around the room, examining the toys and jolting in response to every noise from the living room down the hall.

And I know, you might think, “Big deal! She’d make up for it later.” Not necessarily! Stella never wakes up at night to be fed, even when she’s had very little to eat that day. Sometimes, if she does wake up crying, we’ll hurriedly make a bottle and offer it to her. We are denied every single time. Keeping Stella nourished is work. Not something you can take for granted. It’s tiring and, as we found out, limits your ability to do much of anything–especially while traveling.

A couple days into the trip, in response to her decreased intake resulting from the stress of the trip (happy stress, but stress nonetheless), I almost *lost it*. I woke up and Cody had taken her out with my parents to run some sort of errand. I went from being delighted at the much-needed extra sleep to over-the-top outraged at him for being gone with her at a time when she was supposed to eat and having taken no formula with him. I was beside myself. I actually grabbed my hair and pulled it. I simply didn’t know what to do with my fear and total panic set in. My phone was broken (Stella chewed it to death) so I couldn’t call them. A short while later, Cody walked in with Stella in her car seat. They were both smiling and calm. Stella idly kicked her feet and looked around delightedly. And I felt like the biggest, fattest ass ever. It was the wake-up call that I needed. From then on, I worried a lot less. Which is a good thing, because I don’t have any hair to spare, people.

5.) I bought and received (for my birthday) cute non-maternity clothing for the first time in a year and a half.

As I now type, I’m wearing this adorable T-shirt from Anthropologie, a birthday gift from Cody. It’s the first new, non-gray thing I’ve worn in ages. I also bought this Lilla P Colorblock Dress and a funky gold necklace to go with it, plus a couple other tops (one blue, one coral) and Christopher Blue shorts, in a charming brown/green/blue/pink on white plaid, that fit like a dream. Note that these are all very cheerful pieces. My attitude and the Seattle weather are following suit. And that’s a very good thing.

This new spring/summer wardrobe made the trip even more worthwhile. That and watching my daughter fall in love with her grandparents, aunts, uncles and cousins. Family and clothes are good for the soul. And in Boston, I got my share of both. I’m one lucky *32-year-old* lady.

Meet Diego

Posted on by amberhj

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A freakout. A rant. And endless gratitude.

Posted on by amberhj

Don't worry, it's just prunes.

Don't worry, it's just prunes.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yes, these people are Team Stella, forever!

Thank you.