occupational therapy

Onward

Posted on by amberhj

After weeks of evaluations, we are now in the thick of OT and PT appointments and daily OT and PT work at home, and sensory activities, on top of three types of patching to help fight the double vision Stella experiences. More VT (vision therapy) will come after we finish laying the foundation with OT and PT.

We swing Stella in a blanket hammock each night. We do odd-seeming but clearly very powerful reflex integration exercises. We toss bean bags, and when we miss we re-enact the errant bean bag’s flight and laugh at how it plopped on the side of the coffee table instead of landing in the laundry basket. We become bears, after: setting up a blanket cave, laying fish in a river of blue silk scarves set up across the room, and cuing up gentle river sounds on Spotify. Mama and baby bear take turns hiking to the river, hunting for fish, and then hiking back with fish in mouth. And we put that fish on a party plate because we are fancy bears, with CLASS. And it’s magic because Stella will do bear walks again and again and use flat paws like therapy dictates instead of the fist or twisted finger-tipped paw she naturally prefers. She cooperates with her “exercises” to a much greater extent than I dreamed possible. Much of it is not labeled as exercises. It’s just fun stuff we do that happens to be really beneficial. We are mindful of fitting in lots of silliness and games and stuff that have nothing to do with therapy, too. Because you’re only 4 and a half once, and you better enjoy it. And, okay, Stella’s cooperation followed an extremely rocky start to the new therapy paradigm that resulted in a two-week reward calendar that culminated in a trip to the Disney Store to get the plush toy of her choice. She chose the peas in a pod. How adorable and wholesome is that? I mean honestly.

We are also trying to figure out where Stella will go to school next year. A process that I never imagined would be this complicated and crazy. While her therapy needs and developmental status were being evaluated, all the application deadlines passed. But just in time, I found the perfect school. A private school in our neighborhood with transitional Kindergarten that would be so expensive but so worth it. But will they have a spot for Stella? Will they think she’s ready and are they willing to help support her quirks and current challenges? I don’t know. She goes in to be reviewed this weekend. It’s out of my hands now. If she doesn’t get in, I’ll have to scramble to get on waiting lists. Or something.

I’m pretty stressed out and worried again. I read endlessly about neuroplasticity, which actually helps a lot. Not only with hope for Stella’s binocular vision and associated motor skills but also for better coping and handling of stress on my part. Stella’s brain can change and so can mine. So can yours. Watch this if you don’t believe me. (I just ordered the book: The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science.)

I think we’re doing okay. We are getting most if not all of our daily exercises in every day and we are not battling. We are having some real fun along the way. Not so much with the patching, though. Most days, we have been missing one of the three types of patching. It feels like a bit too much right now–how much can you push a little one before the solution becomes a problem? But we’ll figure it out. Stella’s developmental optometrist is in constant contact with us, proactive about new solutions both short-term and long-term, and very tolerant of my incessant questioning and reporting and occasionally getting upset about it all.

Ah yes, the word of this day is “but.” As in, “This kind of feels impossible BUT we are making it work” or “This is hard and I don’t know how we’ll fit it all in BUT we will find a way” or “I am scared that Stella will hate this activity and we will fail to do what is necessary BUT I have to try” or “I know Kettle Chips aren’t healthy BUT I need them at 9:30pm on a consistent basis.”

We would do anything for Stella. Before these evaluations shed more light on the extent of the issues she faces, we felt our parenting was to blame. We have more complete answers now, and new wind under our sails! The key is a worn out cliche: just take it one day at a time. If I think about a year or two of daily OT, PT and VT exercises, and the reasons behind them, I feel sad, overwhelmed, and discouraged. If I just think about today (or even tomorrow), and what I can do to help now, I come up with creative ideas that work, and wind up feeling buoyed by small successes. Like the above bear scenario, which while a tiny drop in the therapy ocean, felt huge. She hated bear walking, and now she asks to do it again and again. Charlie Sheen, you don’t know what winning is.

My only guilty failing is in giving Stella a piece of hard candy for her nightly reflex integration exercises. It feels wrong, but I was desperate. After discussing with Stella’s occupational therapist and seeing how she worked with Stella, I plan to come up with a special toy for her to hold during nightly stretching and other exercises instead. Preferably something that lights up and features a small keyboard worth of buttons to push and explore. Tips welcome.

My daughter is so resilient. She is a bright spark that nothing can fade. I didn’t think it was possible but I am even more proud of Stella now. And sometimes, of myself too. Go figure.

Taking a stand against tube-feeding crimes and negligence

Posted on by amberhj

Someone needs to say it: tube-fed children and their families are being neglected and often outright abused by a dehumanizing, misguided health “care” system.

If you don’t believe me, read on. Or at the very least, get a glimpse of a far superior alternative by viewing this tube weaning lecture delivered at Seattle Children’s Hospital by weaning expert Markus Wilken, during his visit from Germany. This video is an invaluable resource, which I highly endorse, as you’ll see at the closing of this overdue rant.

Our tube feeding days are far behind us, yet memories haunt us. Like the time I inserted Stella’s nasogatric (NG) tube into her nose, only to have it come out her mouth, instead of going down to the base of her esophagus as planned. Of waking up every two hours to feed her at night, fumbling in the dark with a stethoscope and large plastic syringe in order to confirm correct placement of the tube before setting up the pump to run for 45 minutes–desperately trying to stay awake while it ran, so as to be able to respond in the event of a pump malfunction or choking incident. The blood that, after the first month of tube feeding, consistently encrusted the tube in her tiny nostril. And, in soul-crushing fashion, the bottles of outrageously expensive Elecare, not covered by insurance, that Stella triumphantly downed on occasion, only to re-emerge in projectile fashion thanks to tube-triggered gagging.

Crazily enough, none of these incidents were the turning point for me. None of them woke me up to the immediate need for the tube’s removal. Though I did often wonder how long this would go on, as there was no plan for weaning. I was doing what I was told because it was supposedly medically and therapeutically necessary. I have another mother to thank for my awakening–a mother who didn’t see such a need and whose child paid a huge price.

Back when Stella’s little baby face was accessorized by medical tape securing a thin but lengthy yellow NG tube, we made one of many trips to Seattle Children’s Hospital. This time for an abdominal ultrasound. In the waiting room, two women struck up conversations with me about, what else, Stella’s tube. “She looks so healthy,” said one, whose child also had feeding issues and was headed toward a tube. Then she asked the inevitable question: “Why does she have a tube?” I explained, and we commiserated about the misery of trying to feed a child who simply does not want to eat. The other, with empty eyes and a tired smile for Stella, commented along the lines of, “My son had an NG tube until he was five. Good luck. She looks great. I hope you get her off of it.” Suddenly, my stomach felt as though it were full of rocks. In that moment, I sank to a very dark place. But while down there, I resolved to never, ever let that happen to Stella. I decided to fight.

So, just to make this astounding fact clear, I’ll repeat it: I met a woman whose son lived with a nasogastric feeding tube until he was five years old. Five years of a thick tube through his nose (no doubt causing nasal ulceration), his esophagus irritated, the sphincters held open (encouraging reflux), food administered on some dietian’s strict schedule and chart regardless of what he thought or felt. It’s a perfect illustration of why I’m so angry. Really, really angry. I have been for a while.

I’m outraged at the treatment that many tube-fed children and babies are receiving from doctors and therapists. G tubes, the next step after NG tubes (if eating does not progress) and a much kinder solution in cases of long-term feeding, are not without problems. They require surgery, which when not done properly can cause extreme suffering and even when correctly inserted can contribute to excessive vomiting. I believe that there are many children with G tubes that do not actually need them, and that if physically able but still unwilling to eat, they should be given a chance to wean before surgery is considered. At the very least,  thoughtful, individualized approach should be taken by an interdisciplinary team of doctors, as opposed to the reckless, disorganized decision-making that is now widespread.

Based on my experience with Stella, I’m particularly concerned about those with long-term NG tubes, tubes meant only for short-term use. It’s not okay. Scientific evidence (which I will present in a later post) and common sense tell us that NG tubes cause extreme discomfort and difficulty (slowing of) swallowing. The frequent removal and reinsertion of this tube is traumatic and damaging for child and parent. No matter what kind of tube is used, a complete disconnect with hunger and extinguishing of the desire to eat is practically inevitable. The tube itself fuels eating refusal and aversion, long after the initial issues prompting the tube’s insertion have been addressed. (This is very different from children for whom tube weaning is not an option at all and long-term tube feeding a clear life-saver.) Families are plunged into despair, their lives shrunk down by the oppression of tube feeding (though, sadly, this comes to feel normal for many families), the incessant vomiting, the stunted growth that the tube was supposed to prevent, and the hopelessness that arises due an absence of a weaning plan. Or any plan for that matter. For most of these children, there is no way out. This is, with no exaggeration, a crime.

And then there is the so-called “therapy” provided to these children. When I hear stories of children being force fed, and there are a lot of them, I literally become sick to my stomach. It’s wrong. It’s a disgrace. Yet it’s happening at leading clinics and children’s hospitals across the country. One of the barbaric techniques used: Puree is shoved aggressively into toddlers’ unwilling mouths, which are then held shut for as long as it takes. As long as it takes for them to swallow–and it can take a very long time to swallow when you are terrified of food. What horror! Stella’s occupational therapist noted that some “graduates” of such programs later have to be desensitized after enduring such trauma, the process of learning to enjoy rather than fear food begins again but on even shakier ground. How can a brute-force approach possibly help a scared child discover the joy of eating? It can’t. If the child does eat, it’s not because they want to. It’s because they have no choice and no other way to make the torment stop. The children are sometimes called “obstinate” by therapists and parents who buy into the crazy, unbelievably misguided belief that kids are refusing to eat because they are, essentially, being manipulative little jerks. The children are blamed, their trauma and autonomy completely disregarded. Parents are pitted against children, forced to play coercive games. This is absolute insanity.

There are far better ways to wean children from tubes, to awaken their appetites, hearts, and minds. These methods are infinitely more effective and humane. They are based on respect and compassion, which every child needs and deserves! Beyond that, every child for whom it is safe (mainly, the many tube-fed kids whose initial issues are resolved) deserves to be given a chance to eat. For many families, weaning is never even discussed! Because the child is not eating orally. But why would they? Why would they suddenly enjoy eating when every three hours, formula is pumped directly into their stomach, sometimes only to come back up again due to nausea and rampant overfeeding? When Stella had her tube, our pediatrician said she’d just “turn it around.” As if by magic. That was never, ever going to happen.

I’ve been perusing blogs and boards of parents with tube-fed children and my goal has been to offer support whenever I think my experience with Stella could be relevant. It feels good to provide support and resources, to help bring about positive change based on such a negative experience. But I’m not sure I can do it anymore. There are too many heartbreaking stories of renowned hospitals directing parents to disregard their instincts and squash the dignity of their child. It’s overwhelming. I’ll start to type a reply to certain posts, ones that reveal that a child is being forced to eat in some fashion, only to delete it, because my thoughts are all over the place. My words too angry.  I wonder where to begin. How can I convince someone that the entire medical establishment is harming their child on a root level, rather than helping? There is too much ground to cover, too much fundamental education and changing of minds to do–more than can be conveyed in a comment box. I’m at a loss.

I have such compassion for the parents, yet feel such angst when I see the failure to question the clearly ineffective and detrimental status quo. You have to stand up for your child. No one else will. You have to call bullshit on doctors’ cavalier attitudes toward tube feeding, not to mention their lack of actual knowledge on the subject. You have to challenge therapists whose tactics perpetuate the feeding battle, rather than bringing it to a peaceful end.

But I know. I know these parents are ground down by the stress, loneliness, and sorrow that comes with not being able to nourish your own child—the nightmare that is tube feeding. I know from my own experience that some parents become so desperate that they no longer trust themselves and find themselves willing to follow whatever directions they’re given, perpetuating their own hell, despite the nagging voice inside that tells them it’s all wrong. Or who are tossed back and forth from one expert “opinion” to another, with no one ever offering a real plan for moving towards normalcy and health. Parents are victims of unnecessarily extended tube feeding as well, and the failure to recognize the deep trauma of both parent and child, and how it contributes to disordered feeding, is another gaping hole in the “care” received.

I have by now heard about, and even helped in some small way through this blog to bring about, dozens of successful tube weans. I know some children require tubes for survival. But many others are simply trapped with no visible exit. In particular, I am intimately familiar with three tube weaning success stories: that of my daughter Stella, and those of Zander and Heath, the children of women who have become dear friends. These amazing triumphs were achieved thanks to parental intuition, constant and fearless questioning, and plain old ignoring of bad medical advice, plus exhaustive research and the shaken but intact inner belief that if given a chance, “my child can eat.” These weans required a lot of belief and trust in the child, not the doctors. They required a process of “letting go.” This is hard to do, not only for parents, but for a broken health care system that insists on monitoring and controlling every milliliter pumped through the tube, in order to cover its ass, all while ignoring the impact on quality of life.

Thankfully, there is an alternative, explored in the video below. Upon viewing it, I cried. They weren’t happy tears in response to the wonderful, validating, rare, evidence-based wisdom on tube weaning that the video unveils. I bawled because the speaker, a child psychologist and tube weaning expert from Germany, describes a higher, enlightened quality of care given to children in his country—a standard and mentality that simply does not exist here. Unexpectedly, I was overwhelmed with grief. By and large, Stella did not receive the respectful, mindful, effective and individual care that she deserved. And thousands of children are needlessly suffering right now.

If you’re angry too, looking for a way out of tube feeding, or want to follow your desire to treat your child with more compassion during their feeding journey, please grab a cup of coffee and watch this eye-opening, heartening lecture given by child psychologist Markus Wilken. He has past, direct experience with the Graz method, which he’s incorporated into ongoing weaning and tube management work in hospitals and clinics in Germany. Astoundingly, Markus has successfully weaned a diverse set of over 400 children. Perhaps, within his presentation, you’ll find the encouragement you need to believe in yourself and your child. To live a tube-free life! You can do it. Your child can do it. It’s time to fight.

********************

Here’s the link (some find that removing the “mms” prefix is necessary for successful viewing):

mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv

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.)

My deal with an adorable devil

Posted on by amberhj

As usual, I don’t know where to begin. Over the past two weeks, I have experienced the low of crying while lying sprawled on the floor with a string of snot connecting my nose to the carpet to the high of many truly perfect moments with a happy, big-bellied Stella smiling in the sun.

We went through two weeks of teething hell during which Stella ate a lot less than usual and lost a half a pound in one week. At first, I wasn’t worried at all, because I knew it was due to teething and I knew that her occupational therapist had said that Stella has no feeding issues anymore. I knew it would pass and that she would rebound. I was extremely proud of myself. But then she was throwing up and refusing some of her bottles. So,  in totally predictable fashion, just as I started to worry like a crazy person again, she ate way, way, way more than usual. And that is when we went to Minnesota and had an amazingly good time thanks to fabulous weather, a beautiful 18-acre estate, which seemed like a meticulously kept, expansive public garden/park with a house in the middle, Stella’s healthy appetite, and her adoring grandparents. Oh, and this is big: We stopped thickening Stella’s bottles yesterday, and so far, it’s going pretty well–though we may need to make an adjustment as the #3 nipple seems too slow, even with faster, unthickened formula. Stella doesn’t do “slow.”

So, it appears that Stella has made a deal with us. She’ll eat anything you put in front of her (provided she likes it–and she likes a lot of things), without complaint. Entire avocados. Pieces torn from our grilled steak, crusted from the spice rub. Full pieces of whole grain bread smeared with extra virgin olive oil. Yogurt blended with fresh mango. Millet/brown rice/lentil super porridge pureed with papaya, flax oil and brewer’s yeast. Savory baked tofu by the truckload.  However. She’ll throw over-the-top fits any other time she pleases. I was happy with this arrangement until I tried to change her diaper, at which point she screamed bloody murder and attempted to leap headfirst from the changing table.

Okay, I’m still happy with the arrangement. I’m just wondering how to deal with the emerging tantrums. Like the one she threw on the grass alongside the wading pool at Green Lake this afternoon. She hollered at the top of her lungs and wound up in a headstand position–pretty much dangling by her ankles, anyway–as I put on her diaper. Then we went home and had lunch, and she barked at me while pointing at the toast I was tearing up for her. Apparently, the service is too slow. I’ll work on that, Stella. A deal’s a deal.

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!

Open wide

Posted on by amberhj

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

Posted on by amberhj

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.

Lucky seven. (Months, that is.)

Posted on by amberhj

Stella's got what they call "stage presence."

Stella's got what they call "stage presence."

On St. Patrick’s Day, Stella turned seven months old. I’m pretty sure that means she can get a driver’s permit. And maybe even a part-time job. At the very least, she can sit up for long periods of time before the weight of her large head pulls her over. She can tickle the ivories like you wouldn’t believe. And when sitting in her crib, she can pull herself up to a kneeling position–the gateway to standing.

That evening, as my amazing corned beef simmered in a broth of beer and spices, Stella’s piano showed up on our doorstep. The house smelled like Ireland, and dreams, which was somehow extremely appropriate. We opened the box–an event that was very, very exciting judging by Stella’s even-wider-eyed-than-usual expression as I sliced the tape with my trusty blade–and out the baby piano came in all its shiny red glory. I placed it on the rug, plopped Stella in front of it, and she banged those keys as hard as she could while smiling as wide as she could. Then she promptly forgot all about it and tried to eat the accompanying manual and play-by-color sheet music. Paper is Stella’s #1 passion for now. But music is a close second. After I tucked away the paper goods, she resumed her performance with incredible enthusiasm, intermittently grabbing the top and, impressively, pulling the entire piano toward her. You could see the wheels turning in her head; “Maybe if I try hard enough, I can get the top of this delicious piano into my mouth… mmmmm, piano…..”

Stella’s Little Mozart Piano is really like a musical friend than a toy. Right now, she simply sits on the floor in front of it, and it’s the perfect height. But the piano can be raised up by attaching the base that comes with it, allowing the child to stand or sit on the accompanying shiny red bench and play, making it “the piano that grows with your child.” I think it’s brilliant. Stella absolutely loves it. We really should be saving money rather than spending it, but this was worth the splurge. A long-term investment in FUN.

Yesterday, Stella was not herself. She was cranky and tired in the morning, and grew steadily more so as the hours passed. I realized that she had spent more time sleeping than awake, she was a rag doll, crying unless I held her. And instead of squirming and pushing away from me to look at her surroundings, she curled up into me, resting her head on my chest. Stella was sick for the first time. She had a slight fever and threw up a couple times that evening. But today, she is back to her old self. She dropped that bug like a bad habit! Cody took her to the doctor this morning, and her fever was gone. She checked out fine. And really, seven months was an excellent run!

HOWEVER. Her doctor’s visit entailed a standard weigh-in. Sigh. If she hadn’t fallen ill, I wouldn’t know that she’s only gained about 6 ounces in a whole month. Now I’m anxious and confused. I’m trying to cope, but my attempting to remain calm in the face of this worry is like an alcoholic trying to stay sober in a bar. About a week ago, we switched Stella’s formula from a 24-calorie-per-ounce concentration to the standard 20-calorie-per-ounce ratio. Granted, this means that for most of the month, she was on high-caloric formula, so perhaps we can’t blame the new lower concentration. Since the switch, I’ve been keeping track of her intake and it’s been high–between 30 and 32 ounces per day. Right on track! And this is in addition the face that Stella is mastering the art of spoon feeding. At first, far more food wound up on the floor, high chair tray and her bib and clothing than in her mouth. WAY MORE. But now, she’s swallowing way more food than ends up on her and various kitchen surfaces. On Tuesday, she even finished a whole container of peas in one sitting. Just another reason I’ve been saying “Bravo!” to Stella.

Top o' the mornin' to ya.

Top o' the mornin' to ya.

So, in regards to her minimal weight gain, I am completely baffled. I emailed her occupational therapist to get her thoughts, and perhaps some reassurance. Stella’s doctor didn’t express any concern over her weight, so my worry is “proactive” as usual. I’ll probably schedule an eight-month weight check in order to ease my mind. In the meantime, I’m trying to focus on Stella’s behavior and demeanor instead of her weight. Certainly not the fact that she still fits in some 3-month size clothing. She seems happy and healthy–with the exception of that 24-hour bug–and that’s what counts.

When we’re not playing the piano, eating, napping, or out for a walk, we’re trading fake coughs. I’ll fake a cough. And she’ll fake one back. And then we laugh. It’s good fun, though probably setting her up for hypochondria. Or an acting career.

My other resume

Posted on by amberhj

I’ve jumped back into the freelance writing life in an effort to make a bit of money while I stay home with Stella Bella. This, of course, necessitated the updating of my resume.

It got me thinking. Some of my most impressive achievements and abilities will never grace the pages of this supposedly all-important document. And it seems like a shame. I am referring, of course, to motherhood–all that it requires. And with that, I present my other resume…

EXPERIENCE

Mother, 8/17/08–present (lifetime commitment)

  • Collaborate with Stella Eleanor’s father (my husband) to ensure that she grows and thrives; oversee everything from basic maintenance, such as diaper changes and feeding, to high-level development including babbling, drooling, sitting up, laughing, and rolling/tummy time, with plans to teach her how to be kind, walk, use the toilet and drive
  • Provide attention, protection, guidance and full range of entertainment services including peek-a-boo, tickling, general zaniness and impromptu songs, stories and farting noises
  • Willingly put my daughter’s needs before my own while still taking care of self and providing excellent example of how to live life to the fullest
  • Manage public relations; handle photography and mailing of seasonal cards and wellness updates; manage upkeep of Flickr account with near-daily shots of Stella to prevent extended family from suffering cuteness withdrawal
  • Love that girl with all my heart, 24 hours a day, seven days a week, 52 weeks a year–even when her yelling reaches peak annoy-ability levels

Giver of Life, 8/15/08–8/17/08

  • Gave birth to baby girl weighing 7 pounds and 7 ounces; filled with pure joy upon her arrival
  • Kicked ass throughout 32-hour un-medicated labor during which baby’s head was transverse (sideways)
  • Nearly broke husband’s hands with vice-like grip; will try harder next time

Grower of Human Being, 11/08–8/09

  • Provided egg for successful fertilization; worried endlessly about fetus from moment of conception
  • Attended prenatal yoga, birthing and parenting classes despite overwhelming exhaustion and overwhelmed bladder
  • Ate enough cheese to feed all of Wisconsin for three years; consumed record amounts of grapefruit juice
  • Tolerated the shooting of sharp pains up my rear-end for several months; withstood debilitating hip pain and baby’s roundhouse kicks
  • Enjoyed pregnancy despite all of the above

Warrior, 10/08–02/09

  • Assembled and coordinated a top-tier team of Seattle doctors, as well as two lactation consultants, an occupational therapist, nutritionist, dietitian and cranial osteopath
  • Managed to maintain sanity when baby refused to eat; chugged olive oil and ate bacon in a valiant attempt to fatten starving, anxiety-ridden self and improve quality and caloric value of breast milk
  • Mastered use of Supplemental Nursing System while successfully limiting use of the “f-word” to 400 times per day; managed insertion and maintenance of god-forsaken nasogastric feeding tube and associated god-damned pump and evil face tape and crap-tastic peripherals; sacrificed small but previously perky boobs to hospital grade breast pump
  • Navigated labyrinth of hospital and health care challenges; slashed red tape and improved child’s outcome by 1000%; successfully argued case for the removal of nasogastric tube and executed successful tube weaning; produced a happier child and family as a result of round-the-clock efforts
  • Analyzed growth charts, lab results and intake levels; conducted in-depth, terrifying online research on daughter’s condition and treatment

EDUCATION

The Parental Institution of Barbara and Gregory Hescock

  • Coursework in everything, with an emphasis on love, the value hard work, and a good sense of humor

School of Hard Knocks

  • Classes included Terrible Mistakes, Bad Relationships 101, and The Awkwardness of Middle School

Sink or Swim Academy

  • Curriculum revolved around parenting without anything resembling adequate preparation

SKILLS SUMMARY

General: Expert-level nurturing, crisis and conflict management, hazardous waste handling and sanitation, budgeting, soothing, teaching life skills and morals, child safety, nursery decorating, baby-wearing, silly face and nonsensical sounds mastery

Technical: Milk production, human creation, swaddling, rocking, one-handed diapering (experience with both formula and breast milk poop platforms), bottle maintenance, reflux abatement

COMMUNITY SERVICE

  • Contributed a new member to the human race
  • Responsible raising of a kind, compassionate, contributing citizen
  • Adept removal of screeching baby from public places, ensuring a peaceful community
  • Addition to the world of a love that grows by leaps and bounds each and every day

Please no.

Posted on by amberhj

Stella has been getting more and more difficult around eating again and I am starting to freak out about it.

She is starting to refuse the bottle more and more. She doesn’t want to eat upon waking up after sleeping for 10 to 11 hours. We now wait an hour after she wakes up, and even then she only takes 100 mls. Prior to this rough patch, she was taking 150-190 from all bottles. Spoon feeding is really challenging–it’s not her lack of interest that bothers me, it’s that she gets so upset when you offer it to her. She will take some if she holds the spoon, however.

I am really concerned. To be honest, I am feeling like I physically can’t continue to worry about and deal with the trials of this feeding issue. We’ve been through so much already! I feel such a sense of dread. It’s just so frustrating and draining and worrisome. I was so sure that she was on solid ground. Now the earth is crumbling beneath us.

I thought we were past all this.

I really hope that this is a fluke. Or that a tooth is coming in. Or something innocuous explains this behavior. Perhaps reflux is flaring up and we need to up her dosage. Maybe we need more cranial osteopathy sessions. I can’t wait to get on the phone with Robin, her occupational therapist, and talk about it. This is tearing me apart. My mind races with worry. I feel a bit sick to my stomach again.

Wish us luck…. thank you.