Open wide

So, as I reported earlier, we visited Seattle Children’s Hospital this week to see Robin, Stella’s wonderful and very wise occupational therapist. We wanted to check in and see how Stella is doing with solids. We were worried because she wasn’t eating as much as a nine-month-old is “supposed to” by now. She had not been showing any aversive behavior, and once in a while she’d chow down on bananas, avocado or toast, but overall, her intake of solids seemed pretty low–maybe 1/4 of a cup for an entire day and a few bites of finger food. And it was taking *forever*.

Well, Robin assured us that Stella was just fine. In fact, Stella has no feeding problems anymore, at all. I knew this deep down, but it was an incredible relief to hear it from our trusted expert.

We realized that the problem was us–not Stella. Robin gave us some very valuable pointers on how to feed Stella more effectively. It turns out that we’d been so afraid to push Stella, based on early battles over breastfeeding and bottle-feeding, that we weren’t offering her enough via spoon. We were way too timid. Stella doesn’t need to be coddled. Ever since our meeting with Robin, we’ve pretty much been “shoveling it in” and Stella has been enjoying 1/4 to 1/2 cup of baby food plus a few bites of finger food at each of her three meals. Just like she is “supposed to.” It’s amazing!

She seems to really enjoy my homemade blueberry puree mixed with a bit of cereal, and that makes me so happy! That said, Stella has a nasty cold, which is making food less appealing to her–especially chunky things like finger foods. She’s thrown up immediately after some of her meals due to coughing fits, but it’s tapering off as the worst of her illness appears to be over. It hasn’t slowed her down too much, but I’m interested to see how eating goes when she feels better.

Stella had been taking enormous bottles, up to nine ounces at a time for a total of 30 ounces of formula a day. Contrast that to the days when when 3 and a half ounces was HUGE! So in the two and a half hours before her first nap, she was getting 400-450 mls (that’s up to 15 ounces in the first couple hours!). No wonder she wasn’t into solids. She was full! As a result, we’re in the midst of a schedule shift. I’m almost embarrassed to admit this, but it’s made me anxious.

We had our old schedule *down.* I knew roughly how much she would eat when, and it created a nice comfort zone–for me as much as Stella. Well, as she grows we need to adjust, and that’s what we are doing now. But a low-level panic infiltrated my day. By fitting in these larger meals of solids, we are messing with the timing and amounts of her bottles. She doesn’t seem hungry enough to take a bottle RIGHT after solids. I don’t know exactly when she’ll get her 24-30 ounces for the day and it makes me nervous. I have to watch for hunger cues more closely. So, I am officially out of the comfort zone, and am figuring out what works and what doesn’t. It’s a bit of a throw back to when Stella had her tube and when we were weaning her. I never really knew when she would want to eat. I just had to pay attention and wait–not my strong suit.

I’m giving myself pep talks, and they are effective.  They sound a little bit like this:

“If I can survive the anxiety of a newborn that won’t eat, pumping around the clock, mastering the use of a god damned supplemental nursing system, navigating the complexity and chaos of hospitals and healthcare, inserting and maintaining an NG tube, getting no more than three hours of sleep at a time for two months, weaning my baby off of the tube and curing her aversion without (completely) losing my mind, I think I can figure out a new feeding schedule. Damn it, I can do just about ANYTHING.

And so can Stella.”

Return trip

It’s not an emergency. Nothing is really “wrong.” But we’re about to head back to our old stomping ground: Seattle Children’s Hospital. We’re going there to see Robin, Stella’s occupational therapist. Stella isn’t warming up to solids the way all the charts and books say she “should” by now, at the ripe old age of nine months, so we’re looking for some reassurance and perhaps a few tips on how and when to best offer food to Stella–without getting pushy. As we learned with the bottle, pushing only makes her want to eat less.

This morning, a vision from the past won’t leave my brain. I’m not sure why. It brings me back to our first appointment with Robin, before Stella got her tube and back when my entire day was consumed with the struggle to feed Stella. That morning, Robin filled me with hope. She watched Stella scream at the prospect of eating, she watched us spend a half an hour battling with Stella to get her to take three ounces. And then she said, “I’m going to see you through this,” and I suddenly felt a lot less helpless. But that’s not the moment that’s been on my mind.

I remember departing the room where we’d met with Robin, and walking down the hall toward the waiting room with Robin at our side.  Coming toward us at a brisk pace was Robin’s next appointment, a new mother accompanied by her own mother and arduously lugging her baby, left hand gripping the handle of the car seat. She walked with her entire body at an angle, as a counterbalance to the weight of the baby and her seat. She swung the seat forward a bit with each step, lurching along. The baby was peaceful but alert, with an NG tube taped to her right cheek. That terrified me at the time–I didn’t want Stella to wind up with a tube. But it was the mom who got me. There was such determination in her face and in her stride.  She was clearly focused on the task at hand, eager to learn more about how to help her baby. Eyes locked on her destination. Moving awkwardly, but forward. I’ll never forget that mom.

We’re off. I’ll let you know what happens.

Behold: Tube weaning research and guidelines

Invigorated by our walk

Back in her tube days.

When is the last time a research paper made you cry? Around the time of Stella’s wean, and since then, I’ve come across information that moved me on many levels. I’d like to pass along these sought-after papers to as many parents (of children and babies with feeding aversions and NG tubes or g-tubes) as possible.

Supremely helpful insights and guidance are offered in the article, “Prevention and treatment of tube dependency in infancy and early childhood.”

Details and analysis can be found in the research paper itself: “Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients.”

Update: Also, from Spectrum Pediatrics in Virginia, check out this pediatric feeding tube weaning case study! This case study breaks down exactly how a well-managed and supported wean takes place.

It is with great excitement that I share with this research on tube weaning. When Stella’s NG tube was placed, I immediately started researching the topic online and only found horror stories. I went into full-on panic mode immediately, because there was no helpful information. No hope. Only desperation and despair.

This is now.

Lean but healthy, and happily eating, just months later.

These resources seemed to illuminate our world, bringing light to what was previously a dark informational void. They completely validated my feelings and my husband’s feelings–our whole struggle, our crazy experiences, our obsession–surrounding Stella’s feeding aversion and tube placement. It’s fair to say that in this case, reading was healing. It’s so helpful to understand how calories are reduced and what a respectful, child-centered wean looks like.

Why are these papers such a big deal? Because so little research on tube weaning exists, and therefore most parents and doctors are really just “winging it.” Yes, some children require tubes for long-term survival and the authors of these papers fully acknowledge this, of course. But many children who are capable of eating on their own, whose core feeding or other issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life and impairs development. There’s a better way, and we need to spread the word.

Children and their parents are sent home from the hospital with feeding tubes in place, but without anything resembling a clear time-frame or plan for tube-feeding, and certainly no plan or support for weaning. Children and families deserve better than that.

I find these two excerpts from the tube weaning article and research to be particularly powerful:

“Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of gastric feeding. It is characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into insignificance besides the nightmare of a child who will not eat or drink. Nevertheless, tube dependency is not recognized as a problem by many pediatricians.”

“Parents of tube-fed children feel unhappy about their plight. If the duration of tube feeding exceeds the predicted period of time, they will wish to start tube weaning but lack the means to do so. A vicious circle of insecurity and desperation may result. Pressure and adult expectation build up, causing the child to resist any steps towards autonomy. Parents report feelings of anger, guilt and sadness at the sight of other children eating normally. In earlier studies (Lit 42,43) we reported that 86% of parents of tube-fed children suffered from overt depressive symptoms that disappeared after their children had begun to eat normally.”

The following excerpts should give you a quick, high-level view of the study (its purpose and outcome) as covered in the papers:

“Results: 203/221 patients (92%) were completely and sufficiently fed orally after treatment. Tube feeding was discontinued completely within a mean of 8 days, the mean time of treatment was 21.6 days.”

“The rationale for this retrospective study is to specify a successful tube weaning program in infancy. Many children remain tube dependent after successful healing of their underlying disease. Tube dependency often is accepted as ‘unintended side-effect’ of the treatment.”

“The main hypothesis of the study is: specialized treatment is highly effective and allows weaning severely impaired children even when numerous previous attempts had failed. The primary objective was complete weaning from long-term tube feeding based on sufficient, self-regulated oral intake.”

“The most important point of the model is the concept of full oral autonomy of the infant from birth and the implementation of this concept into the daily handling of parents and caregivers dealing with eating disorders, feeding disorders and tube-fed infants. Hunger is the main motivation for the attainment of self-regulated eating behavior.”

“[Tube] Placement must be preceded by clear criteria and a decision as to the indicated nutritional goal and time of use. The placement of a temporary tube must generate a plan covering maintenance issues including time, method and team for weaning. Aspects of tube feeding that go beyond purely medical and nutritional issues need to be considered in order to minimize the frequency and severity of unintended tube dependency in early childhood.”

In Spectrum Pediatrics’ detailed case study, you’ll see many references to honoring and respecting the child and being attentive to the child’s cues. The goal is to allow hunger while minimizing stress, and to create a situation wherein the child chooses to become an eater by mouth:

“The team members utilized intuition and developmental knowledge in order to read the “cues” of the patient to know what the child wanted to eat, as well as with whom and where. All of the eating scenarios were very relaxed and focused on fun and play. The tube weaning program team members were cognizant of ensuring an eating environment that was comfortable and low-anxiety. If the child was ever afraid to eat, the therapists and parents would return to enjoyable play activities. He was able to cope with his post-traumatic feeding disorder and its negative effects through play in the low-stress, enjoyable environment.”

“The patient continued to exhibit changes in his hunger and sleep cycle on the third and fourth day of the tube weaning program. He had difficulties with sleeping based on his new sensations with hunger and self-regulation. The team continued to make the eating situation as comfortable as possible for the patient by “following his lead”. This led to feedings of his most desired foods and in a variety of locations, including outdoors, indoors, on the floor, in the bathtub and in the car. The team also continued to provide water-dense foods, such as melon and cantaloupe, in order to ensure that he was keeping well hydrated. It was evident that he was growing in his familiarity with new sensations, foods, and oral motor skills.”

I hope these resources are as helpful to you as they were to me! Best weaning wishes.

Nine months

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.

Yes, that’s a toothbrush next to the can opener.

This is not staged. It’s an actual mess that accumulated on our counter one evening last week.

How did this happen?

How did this happen?

Here is a list of all the things that do not belong here:

  1. Three wine bottles
  2. Half of an avocado
  3. Dirty bib
  4. Grater
  5. Onion, avocado and mushroom scraps
  6. Notebook
  7. Can opener
  8. Electric toothbrush
  9. Toothbrush charger
  10. Measuring spoon
  11. Bag of Simply Thick packets
  12. Empty tupperware
  13. Steak knife
  14. Drinking glass
  15. Baby washcloth
  16. Chocolate bar wrapper
  17. Rolling pin
  18. Wine bottle stopper
  19. Dirty paper towel
  20. Cheese rind

The impressively diverse clutter gives the impression that we were bathing and feeding Stella, cooking a Mexican feast, drinking heavily, baking brownies, brushing our teeth and taking notes at the same time. But no. This is not the result of intense multi-tasking. It’s the product of a Facebook addiction, tiredness from staying up very late to do some freelance writing, and chasing Stella around the house as she crawls from one room, cupboard or table to the next. I rest my case.

Firsts and fiascos in Boston.

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.

A drum roll seems inadequate

Today, we took a big step. It could save us a few hundred bucks a month while providing Stella with a better form of nourishment. OR IT COULD RUIN EVERYTHING.

You see, Stella’s formula is no longer covered by insurance. The really insane part of all this? Regence covered the formula when it was fed to her through a tube. But now that we’ve busted our asses to wean her off the tube, saving the insurance company costs encompassing her pump, tubes, tape and peripherals, they will not pay for her formula. It makes no sense whatsoever. NONE. We even had her doctor write an appeal, explaining why the formula was medically necessary. Doesn’t matter. Formula is completely excluded under the asinine rules of our insurance plan.

Stella’s elemental (hypoallergenic) formula costs about $40 for a 14-ounce can, roughly twice as much as typical formula (probably a little more). We can’t afford this right now. Especially since I was laid off. (I’d been expecting to go back to work part-time, but no dice. Did I mention I was available for freelance writing work?) That said, OF COURSE, we will continue to buy this formula and make whatever sacrifices necessary if we discover that her pricey fake milk is indeed crucial to her well-being.

A dietician recommended a formula based on hydrolyzed whey protein. This means that there is dairy in the formula. Even though it is partially broken down to “aid digestion,” this formula poses a risk. So, we’re starting slow. To make her 24-calorie-per-ounce formula, I usually make batches of 10 ounces of water mixed with six scoops of formula. So today, one of those six scoops was the new formula. I’ve read that it can take up to two days for the intolerance to rear its ugly head with symptoms like diarrhea, vomiting and general fussiness due to the pain. So I think I will stick with the low amount of new formula so that I don’t completely bombard her system with dairy.

It’s possible that she’s already outgrown the intolerance (though it usually happens closer to one year). Or that she never even had it to begin with. I’m not sure I ever explained that her “cow’s milk protein intolerance” diagnosis has never been proven scientifically. It’s just a theory based on her lab results and symptoms. Cody and I have read about another possibility: lactose overload. This could’ve happened when, after experiencing painful reflux, Stella nursed for very short periods (because taking in larger volumes exacerates reflux), giving her tons of lactose-heavy foremilk and little to no fatty hindmilk. All that lactose may’ve overwhelmed her system, which just couldn’t break it all down, causing damage to her intestines, weeks and weeks of diarrhea, terrible stomach pain, etc.

Another bit of motivation for this somewhat daring move is that her current formula consists mostly of corn syrup. Not the best quality nutrition. Might as well give her sugar water and a multivitamin. Then again, with all the corn syrup she’s eating, shouldn’t Stella be morbidly obese by now?

She was fussier than usual tonight, and her cheeks are rosier than usual, so I am already worried. Not sure we’ll have the guts to continue this trial much longer. In the meantime, I’ll be watching her facial expressions, cheeks, and general mood very carefully.

FYI

Never tell a mother that her baby looks nothing like her. I don’t care if they look like they’re from different planets. Don’t. Say. It.

I carried Stella in my uterus for nine and a half months then pushed her out of my hoo-ha after 32 hours of agonizing labor. And then there were the feeding troubles I saw her through (more agonizing than labor). I am her MO-THER. She is my BAY-BEE. And even though I know that I shouldn’t care, and even though I know we don’t look very much alike, I do see myself in her, and, well, it’s just rude to say otherwise.

A small handful of people (none of whom are moms, and maybe that explains their cluelessness) have told me that Stella and I look nothing alike. One of these individuals is an old man who tends to hang out on the bench in front of my favorite coffee shop. He said, “Wow, she looks JUST LIKE YOU,” then started laughing hysterically at the ridiculousness of the statement. Classy gentleman.

If anyone asks, or if I’m in earshot, here is what you say,” Wow, Stella and Amber are practically identical! Amber’s got herself a mini-me! HOW ADORABLE.”

Got it?

Wrong again. Then right.

There have been so many times during our seven months with Stella when we thought we had everything figured out, only to discover that we were completely wrong.

Back when she was refusing to eat and not gaining much weight, before her two months with the tube, we were, at one point, convinced that the issue was her poor latch. Then it was my low milk supply. We were way off, and it would take us a while to realize that Stella’s latch was indeed okay–she just didn’t want to take in milk and acted accordingly, which led to my low milk supply and not the other way around. Then we were certain that THRUSH explained why she didn’t want to eat. Nope–the doctor took one look and shot that down. Then it was lactose intolerance that was the cause of all our trials and tribulations. Wrong again! Her lab tests pointed in another direction (cow’s milk protein intolerance–whatever that means).

One night last week, Stella woke up AT LEAST a dozen times and screamed her head off upon opening her eyes. She shook her head from side to side. She was furious and clearly in pain.  Holding her, bringing her to our bed–all the usual no-fail tactics–did little to nothing to soothe her. She was incredibly fussy with the bottle (our nightmare revisited). But we thought she’d just fought off a bug of some kind, so after some quick online research, the answer seemed obvious: Stella had an ear infection.

Nope.

The next day, a pediatrician told us with 100% certainty, after peering into Stella’s adorable ears, that there was nothing resembling an ear infection. She also felt around Stella’s tummy, applying pressure in an attempt to find intestinal discomfort. There was none. There was no source of pain that could be identified, except for her second tooth coming in, just to the left of the one, in the front on the bottom, that came in a couple weeks ago. The last time a tooth erupted, sure, there was fussiness around eating but not endless bouts of screaming and almost completely sleepless nights. We were baffled. Again.

And to make matters worse, at her appointment, she weighed in a full two ounces less than the previous day’s doctor’s visit (she’d been acting like a rag doll and was clearly sick, then we thought she fought it off, then she stayed up all night screaming, then we thought she was okay for a day, then she developed a horrendous cough). Which put her one month weight gain at a mere 4 ounces and just about sent me off the edge. With the doctor’s help, we came up with a game plan to get her some additional calories. I’ll be mixing in rice cereal with all her spoon fed meals–though I don’t think she’ll ever take as much rice cereal as they want her to because she simply doesn’t like it. We have all but removed the fruit in her bottles, as it may have a laxative effect (especially the prunes) and take up the space of the more nutritionally important formula. (Though in hindsight, that plan seems futile–a sweet sort of futility made up of good parental intentions. Stella will eat what she wants to eat, when she wants to eat. And there is so incredibly little I can do about it.)

Just when we thought everything was going so well.

But then, earlier this week, she ate 30% more than she is “supposed to.” And now, she’s back to not wanting to eat, because she appears to be teething (she chews on the nipple, doesn’t want to suck, yadda yadda.) I guess that’s just the way babies are. Last week, Cody was feeding Stella, and despite how much I love her (so much that it makes me crazy sometimes), I just wanted to leave. I didn’t want to hear the crying. I didn’t want to worry myself sick. I didn”t want to wrestle with the mystery of  “what is wrong now.” I just wanted her to be okay. To be healthy and happy. How can such a simple wish be so heavy?

Well, today I’m in a different place. Cody just fed her. She took about 100, far below her usual. But I don’t feel the need to avoid the situation. I am not as worried. Something has changed. Maybe because for the few days preceding this teething strike, she ate like a champ. She ate like you read about. She ate like eating was hip and she was a hipster. She ate like it was the only thing worth doing. So, if for a few days she doesn’t eat as much, how can I really worry? She is doing what she needs to do. I trust her. She is not the baby that used to scream her head off when she saw the bottle. Nowadays, if she doesn’t want to eat, she chews on the bottle. The bottle is her buddy, not her enemy. Her new tooth isn’t a buddy at the moment, but that’s okay. She is a baby, doing normal baby things. I am a new-ish mom. Experiencing normal new mom things. We are “normal.” (As normal as there is, anyway.) There is no tube. There is no feeding aversion. We are so blessed. And to worry this time in our lives away would be criminal.

Seriously. She is so cute I can’t stand it. I am so mindblowingly lucky. And gratitude now outweighs worry. By far. What a difference a few months make.

With that, I’m dragging Cody and Stella to Molly Moon’s. After all the emotional progress I’ve made, a sundae is in order. Make it snappy. And don’t you dare skimp on the whipped cream.

Stella Hungry.

Diaper or fashion statement?

Diaper or fashion statement?

Stella took a little more than 34 ounces (1,030 mls) of 24-calorie-per-ounce formula today. The high end of normal for this age is 32 ounces of 20-calorie-per-ounce breast milk or formula. She’s been eating like this for a few days. Holy moly.

We stopped giving her Prevacid. She is now only taking Zantac. Yay for less drugs in my baby’s system! We also greatly reduced the amount of baby food we put in her bottles as the amount of prunes we were putting in before may’ve had a laxative effect. Oy.

Her legs are too long for all her pants. Onesies have to be stretched to fit her. She may not be a chubbabutt–that’s not who she is or how she’s built–but she is getting long! The girl is growing… I can barely keep up! And we’re going through Cheerios like nobody’s business.

She may double in size by week’s end. Stay tuned.