cow’s milk intolerance

Meet fearless Frankie and her parents

Posted on by amberhj

Update: In March of 2010, her parents announced that Frankie discovered the joy of eating and left tube-feeding behind for good!

I’d like to introduce you to Francesca and her devoted parents.  Their extremely touching and wonderfully written blog, Frankly Frankie, documents Francesca’s struggles with eating. They need our morale support–right now.

Adorable two-year-old Francesca, or Frankie, has a story that begins very similarly to Stella’s: severe reflux (GERD) and cow’s milk protein intolerance, signaled by bloody diapers, led her to refuse to eat as a newborn. Frankie’s mom, Brett, eliminated dairy from her diet to no avail (sounds familiar). As with Stella, a reluctant switch to amino-acid-based formula and bottle feeding was made. But Frankie was unfamiliar with the bottle, the very expensive formula caused terrible constipation (not to mention its horrible taste), and she soon shut down orally, with near-total refusal to eat. Diagnosed with Failure To Thrive (FTT), she descended through the ranks of the growth chart until she fell off, despite valiant daily efforts to feed her “normally.” A g-tube (PEG) was surgically inserted into Francesca’s stomach in order to prevent severe malnutrition. Francesca remained off the growth charts until very recently, a truly hard-earned achievement for her parents, a milestone that prompted celebration.

She is now two years old and has been 100% tube-fed. (For the full story, click here.) But not for long. Frankie’s parents very recently embarked on an intensive and heroic weaning effort. What touches me so much about their story and current efforts isn’t, as you might expect, that Stella could easily have wound up in the same exact situation. What gets me is the absolute dedication and above-and-beyond efforts of Frankie’s parents. They are doing everything humanly possible to help Frankie discover the joy of eating. They have turned their home into a play picnic, a highly successful and messy therapeutic Graz method used during weaning that allows tube-fed kids to explore and play with food without pressure, on their own terms, and become comfortable enough with food to eat. The floors and walls in Frankie’s home are sticky.

A few days into the weaning process, Frankie’s parents are trying hard to keep the faith, as Francesca still prefers ice cubes over the many treats offered, including (hold on to your hats):

“oatmeal with soy milk and brown sugar, dried cranberries, pita chips, cherrios, sharp cheddar cheese, bread with seeds, coconut rice, apple sauce, carrots shaped like coins, vegetable and goat cheese frittata, whole wheat spaghetti noodles, steamed broccoli, carrots shaped like flowers, potato chips, medium cheddar cheese, slices of banana, cinnamon rolls, acorn squash, swiss chard, butternut squash, sour cream, rice krispies, puffs, bacon, scrambled eggs with cheese in a tortilla, spinach, red bell pepper slices, coconut flakes, frosted animal cookies, miniature strawberry yogurt covered pretzels, dried mango-pineapple, dried banana, egg noodles with green onion, salt and pepper, salad greens, baked potato chips, polish sausage, red cabbage, mini marshmallows, dried apples, chocolate yogurt covered pretzels, dried apricots, corn chips, dried cherries, croissant, peaches, banana bread, colby jack cheese, graham cracker cookies shaped like bugs, french bread, fresh mango, cookie bars, pear slices, candy corn, gummy bears, lettuce, chocolate frosting, gingerbread cookies, white frosting, salt and pepper potato chips, chocolate, quinoa, garlic bread, french toast, popcorn with butter, pink pixie popcorn, yogurt, celery with cream cheese and raisins, wheat thin crackers, apple slices, turkey soup with dumplings, uncooked pasta wheels, yellow raisins, brown raisins, fruit loop cereal, orange cinnamon rolls, parmesan cheese, tortillas, dried mango, tortilla chips, grated cheese, beef chili, pancakes with butter and maple syrup, chocolate cookies shaped like bears, jelly beans, deviled eggs, toast with raspberry jam, carrots with ranch dressing…”

Francesca is undergoing huge psychological and biological changes, and needs time to adjust. As such, with this type of weaning, there is a lot of anxious waiting and hoping, and often, a good measure of sheer desperation. (Hek, I threw bottles.) The outcome rests squarely in the hands of the child. As a parent, you feel helpless. Your role? To make food available (really, without even “offering” it), to remain calm, and have faith in a child who has rarely if ever shown any interest in eating.

Tube weaning is extremely stressful, even when it is going well. It’s an incredible leap of faith, and a very lonely journey. Please take a moment to visit the blog, Frankly Frankie, and send your warm, supportive wishes in comment form.

I’ll sign off by simply stating that I have absolute faith in Frankie, and her parents.

Cow’s milk and other assorted beverages

Posted on by amberhj

"Where the HELL is my brie???"

"Where the HELL is my brie???"

I have somehow neglected to mention that Stella is now enjoying dairy. Holy cow! Yep, it appears that Stella has outgrown her cow’s milk protein intolerance. Or, who knows, maybe she never had it and something else in my milk was bothering her–like toxic waste. Toxic waste from my boobs. We may never know. I’m just thrilled that she can enjoy cheese!

We successfully weaned Stella off of Elecare and onto Nestle Good Start with Natural Cultures (it’s stage 2, for nine- to 24-month-olds, which just means it has more calcium, phosphorus and iron). This is a standard though supposedly gentle cow’s milk based formula, and probiotics are included so we no longer have to add them to each bottle. We now get twice as much formula for half as much money. No exaggeration whatsoever. Hello savings account, we’ve missed you! After a while on this stuff, we’ll try cow’s milk, a cost-effective transition that will allow us to retire in style at the age of 50.

That said, we need to figure out next steps re: Stella and beverages. She is currently (still) enjoying three bottles a day and takes only a couple of ounces of water at best from a sippy cup in-between. She uses these easy-to-grip shorties or, less often, these taller straw cups–both are The First Years’ “Take and Toss” and cost just $3.49 for several (and no, they don’t know I exist and have not paid me to mention them to you and my other reader). My theory is that it’s just too boring. She prefers to sip from our fancy un-capped glasses, especially if we are drinking fizzy water or citrus or other adventurous (by one-year-old standards) juices.  (Put it in a sippy cup and it’s suddenly repulsive–I tried!) Actually, she prefers to dunk her hand into our glasses, until her arm is submerged up to her elbow, then bring her hand back up to the surface and splash around as if enjoying a flavored, appendage-only bath. She’s been using a straw for a couple months now. I’m always amazed at how, after sipping icy-cold something-or-other from the straw with a very concerned and pained expression, she stops, recovers, then quickly gestures (points) for more. I can’t help but blame it on Cody and his genetic predisposition toward compulsive enjoyment of  “new and exciting” beverages–anything that just landed on the shelves, anything with “Extreme” in the name, any ridiculous and frightening combination of flavors. He sees these products as dares, and he’s always IN. See? Stella views our beverages the same way.

Last night, during our weekly trip to PCC, Cody bought a single can of Hell or High Watermelon Wheat Beer. While clearly named by a copywriter after me own heart, Cody’s ruthless palette immediately declared, “not watermelon-ny enough,” and moved on. Whenever he uses our car (we are one-car martyrs), a can of some never-before-seen concoction typically involving mango is left behind. Labels fall into two categories: 1) starburst-covered design tragedies sporting titles like Extreme Lemon Ginger Caffeine Explosion (100% Unnatural!) and Lavender Pomegranate Infused Ginger Ale with a Kick of Narcotic Wasabi and 2) ultra-minimalist, too-chic designs touting gems like Dry Cucumber or Simply Kumquat.

This shared tendency will certainly complicate trips to the grocery store with Stella, and soon. While other kids demand candy, Stella will likely throw a fit over some imported sparkling juice with floral essence. For now, we linger in the chill air of the dairy case.

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.

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.

Toes company

Posted on by amberhj

Stella would be very happy if left naked and able to nibble on her toes all day long. That’s right. Today, she finally, after many past efforts, put her foot in her mouth, and chomped on her big toe. And then she kept doing it. Over and over.

She is talking more and more. Making a wider variety of sounds, including one very wordy sounding verbal concoction that sounded something like, “a-GOW-ya-ma.” Though, she mostly sticks to the basics: motorboat noises, monster growling, and the simple but timeless classic, hollering (at the top of her lungs). Also, she laughs and squeals. A lot. It’s delightful.

Stella and I enjoy some lovely conversation after eating brunch at Tom's.

Stella and I enjoy some lovely conversation after eating brunch at Tom's.

Stella had a ball with Phyllis and Josh today at Tom's! Stella only yanked on Phyllis' hair once--not bad!

Stella had a ball with Phyllis and Josh today at Tom's! Stella only yanked on Phyllis' hair once--not bad!

We had brunch at Tom’s today. We were able to time our visit between feedings and naps and it worked out perfectly. Stella really enjoyed it for the most part! A few people held her and she was cool with it. At one point though, due to teething or sunshine in her facem, she wailed briefly. Tom’s new dog immediately chimed in, howling along with her. It was so cute I almost threw up my waffles and bacon onto the table.

We have ceased to measure how many milliliters she takes from the bottle each day. I knew by a rough mental count that she would up around 1,000 yesterday, but I didn’t write anything down or keep anything resembling close track. There is no need to obsess about it anymore. Actually, the need has been gone for a while now, but until this weekend, I was still very much compelled to write it all down. Every little ml. It was a total compulsion. An ingrained habit. Throughout Stella’s feeding aversion and time with the tube, I think that writing things down gave me a feeling of control. That somehow, by recording it all, I could see the problem more clearly and make it better. There was a lot of love and fear in those notebooks and Excel spreadsheets… exhibits A through Z in making a case for getting her the help she needed. But she’s beyond that now. We all are.

Tomorrow, we will visit Stella’s occupational therapist, Robin Glass at Seattle Children’s, probably for the last time. We have some questions for her. We would love some guidance on how to fit in baby food amid her bottles, which she has just recently come to love. We are putting baby food in her bottles, so that may affect how much baby food we can offer by spoon. We’ll see. I’m really looking forward to seeing Robin and thanking her from the bottom of my heart, feet, soul and gallbladder.

Stella will be six months old in nine days, on February 17th. I can’t yet fathom this. We will definitely be celebrating her half-year mark with half a cake and plenty of champagne. Rose champagne, of course.

A “grand” day

Posted on by amberhj

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

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

Today, Stella enjoyed 1000 mls from the bottle.

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

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

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

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

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

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

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

Days 22 through 25: Stella got her groove back

Posted on by amberhj

As Stella’s occupational therapist put it, “Stella has internalized the joy of eating.”

Her feeding aversion is, well, history. A memory. Though not a distant memory, of course. We still get nervous if she goes for a long stretch without eating. We still watch her eating behavior like mama and papa hawks, and breathe a sigh of relief when she finishes a bottle. But mostly, we are in complete awe of Stella’s incredible appetite. Her ability to down six ounces in less than five minutes. It’s nothing short of a miracle. But then, miracles don’t come easy. You have to work for them. You have to be patient. And you have to believe. There were moments when this wonderful outcome didn’t seem possible. But deep down, we always knew she could do it. That the tube had to go. There was no question.

Stella’s intake for the last week has been between 770 to 875 mls a day. Of course, her formula is made at a 20% higher caloric concentration than typical breastmilk or formula. So she’s getting quite a lot of nourishment, which is quite evident in her diapers! The really crazy part, for us, is that she now takes in 160-180 mls at a time. We remember the days of her taking only 20 to 45 mls, and thinking, “Well, that’s good! She’s eating, and we can build on that!” Then we were absolutely thrilled when she showed she could take 100 mls on occasion. We remember her screaming at the sight of the bottle, arching her back and tossing her head back when the bottle was offered. Now she lunges toward the bottle and pulls it to her mouth. She cries UNTIL she sees the bottle. It’s just astounding.

I remember driving one day, during a wind storm that hit at the height of Stella’s eating troubles, listening to Patty Griffin’s “Love Throw a Line” and singing and crying. This was back when I was so sick with worry, and so overwhelmed, that I couldn’t eat or sleep.  I stopped at a light and looked up to see a mighty, towering evergreen tree whipped up into a frenzy by the wind. The trunk was bending and swaying and the bows were being tossed about so vigorously that the tree looked angry, as if it were fighting back at the storm. Yet, it was clear that this tree could handle the winds. In fact, it was designed to withstand such a storm and had lived through hundreds of them. I saw myself in the tree and its wild, fitful dance. In that moment, even though I’d been feeling like I was losing my grip, I knew I could handle it. That I would help Stella recover, and that we would be okay. Even as Stella and I struggled, we were staying strong at the same time. Just like that tree. I’ll always remember it.

Yes, we’ve weathered a storm. That said, during our stay at Seattle Children’s Hospital, I was struck by how incredibly lucky we are to have Stella–a healthy, happy child, who had a temporary, treatable issue with eating. There are so many children and babies just struggling to survive. Babies like Kayleigh Freeman, who was born weighing just one pound and who has defied all the odds, and bounced back after countless surgeries and trials. (We bought bracelets to support her and will wear them with pride when they arrive!) This experience with Stella has truly opened my heart. I already loved all babies and children, but now there is a whole new layer to that love. A compelling urge to help little ones in need. Cody and I already sponsored a child, and recently, I signed us up to sponsor another little girl–her name is Anyi and she lives in Honduras.

We’ve learned and grown so much over the past five months. (Can you believe she is five months old???) We are truly blessed. Stella is thriving and, as always, an absolute joy. I want to help other parents find the same feeling of  happiness and relief that we have experienced. In the coming weeks, I will find a way to put my strengths, talents and passion to work for children who are struggling. If I can make life even just a little bit better for even just one other baby, well, it would make our experiences all the more meaningful.

You know that feeling after a storm has passed? Quiet and calm settles in over everything. There is a striking stillness in things recently battered by what seemed like relentless winds. The scents and colors of the earth are more vibrant thanks to the rain. That’s what it’s like around here now. Brighter and more peaceful. Except for the teething.

Ha! Now we get to focus more on all the “normal” baby challenges and happenings. Every time I bend down to pick up the teether toy that Stella has dropped for the thousandth time, I smile.

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

Posted on by amberhj

Finally, we can all relax.

Finally, we can all relax.

I love Christmas. A tree is a must, of course. In fact, a Christmas tree really has to be at least six feet tall for it to feel right to me. I’ve been collecting ornaments for years and love every one of them. Now that we live in a house, I wanted to decorate the porch with lights so that our home was as festive on the outside as it was on the inside. I bought many more strings of lights than was necessary, put them up with care, plugged them in, and–nothing happened. The lights worked when I plugged them in indoors, but the outdoor socket was a dud, apparently. I was disappointed, but quickly moved on. Both lazy and distracted by the goings on with Stella, I just left the lights hanging up out there, an ineffectual tribute to my holiday spirit. Or so I thought.

Last weekend, Cody and I attended his company’s holiday party, delayed due to Seattle’s crazy holiday weather. We were gone for five hours, and, yes, we did manage to find topics of conversation other than Stella–though of course we talked about her eating, poop, and cuteness at least a few times each. Upon arriving home, I believe we were arguing about some petty little thing that I can’t recall when we looked up and noticed that the Christmas lights on our front porch were ON. The festive, unexpected sight stopped us in our tracks.

We still have no idea how it happened. Neither does our friend Barb, who was watching Stella that evening, or our landlord. We flipped every switch we could find to see if we could figure out what had given them power. We never found an answer. So, we have chaulked it up as a “post-Christmas” miracle. A sign.

Yes, it may be magical thinking and total conicidence, but since the icicle lights’ spontaneous illumination, Stella’s eating has steadily improved. She didn’t eat much while we were at the party, but she did take 200 mls from Cody before bed that night–a lot in a short amount of time. In fact, since that mini-miracle, feeding has become enjoyable for all of us! Something has changed in Stella. And THAT is truly miraculous. 

We don’t want to get ahead of ourselves. There could very well be more ups and downs as Stella continues to adjust to life without the tube. Actually, I’m sure there will be. But what really, really amazes us is the shift in her mindset and behavior around eating. Over the last couple of days, Stella has decided that she WANTS TO EAT. She gets hungry often, and when she sees the bottle, she LUNGES toward it, grabbing it with both hands, pulling it to her mouth and sucking on the nipple before we have a chance to settle into our new, seated, comfortable, relaxed, unswaddled feeding position. I can’t tell you how incredible this is. We are in awe.

The numbers aren’t as important as what I’ve just described. However… on Thursday, she took 700 mls. Friday, she took it up a notch to 725. Saturday, she upped the ante to 770. And today, she ate a whopping 875–with gusto! Stella has left no doubt. She can do this. She IS doing this.

There is a new energy in our household. Joy? No, that was always there, surrounding Stella, even with the tube. I think it’s relaxation. After so many months of worry, it’s another little miracle to savor.

Days 16 and 17: Sweet, sweet progress!

Posted on by amberhj

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

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

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

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

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

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

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

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

Day 15: Ugh.

Posted on by amberhj

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

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