For our first edition here, let’s introduce ourselves, and our picky eater (or eaters). Then in whatever format you choose, share one tip for a success you’ve had with your picky eater, or ask for tips for dealing one challenge that you’ve been facing with your picky eater.

I’ll try to include a tip both for the standard picky eater and for the picky eater with additional medical challenges in each of my posts. (For Picky Eater’s Club information click here.)

Hello there! Have a picky eater or two (or three…)? Well, join the club! I’m Michelle and I’ve got two of them, Jacqui is five, and Kyle just turned two. Jacqui, on top of being naturally picky, had a ton of early medical issues that further enhanced her picky-ness through sensory and food texture issues and the like. Kyle isn’t naturally picky, but he has severe reflux that we finally have pretty well controlled with medication. The reflux has caused him to balk at certain flavors and textures so I have some picky-ness issues with him too. Our house is just tons o’ fun!

I hear all the time from moms that they just can’t get their kiddos to eat, so I thought why not pool our experiences here and outsmart the little rascals! Here are my tips for the week, one for the standard picky eater and one for dealing with extra medical challenges:

My Eating Jar/Good Job Jar System…

Once I finally got Jacqui eating, I began looking for a way to get her to self-motivate during meals. It gets so tiring to sit there saying “take another bite… take another bite…” What I came up with is a pretty simple little system that cashes in on her fascination with piggy banks. I went to our local Dollar Tree store and picked up a duckie toothbrush holder, a wicker basket, three bags of craft gemstones and a larger jar with a stopper. Six dollars total.

The large jar is her ‘Good Job Jar’. She gets gemstones for doing things well: Keeping her room clean, making her bed, using polite words, putting her coat and shoes away when we first come home — that sort of thing. She loses stones for yelling, messing up her room, bickering with her brother, etc. When the jar is all full (takes her about three months on average) she gets a special outing of her choice. We’ve gone to a local amusement park, the beach, the aquarium. She’s currently saving to go to the zoo.

The little toothbrush holder jar is her ‘Eating Jar’. She gets a gemstone for each food item finished to a parent’s satisfaction and two gemstones for trying a new food for the first time. She gets three stones at the end of a meal if we don’t have to remind her to keep eating. No stones are ever taken out of the eating jar. When it is full she exchanges it for 30 minutes of computer time, a sheet of stickers, or some other reward we have agreed on. She typically fills up her ‘Eating Jar’ twice a week. We do have to frequently change the reward or she gets bored.

The other part of the system is a timer. If she is being particularly belligerent, a set amount of a type of food that should easily be able to be finished in five minutes is set aside on her plate. The timer is set for five minutes and if she doesn’t eat it before the timer goes off, she loses a stone out of the ‘Good Job Jar’ for not following directions. The timer is set for another five minutes and so on. It usually only takes one or two rounds of this to get her focused back on earning stones for the ‘Eating Jar’ instead of losing stones from the ‘Good Job Jar’.

This little trick along with some others I’ll share later have saved us a lot of mealtime headaches. Hope it can help someone else out as well — bottom line is never give up and keep looking for unique ways to motivate your child.

Dealing With Medical Related Eating Issues…

So let’s begin at the beginning here. You’re a new mom, with a baby in the NICU on tube feedings. Maybe they’re a preemie, maybe they’re on a ventilator. Whatever the case, not every NICU is going to tell you how important it is to maintain your baby’s sucking reflex. So I’m going to tell you… if it is in any way an option, it’s super important to maintain your baby’s sucking reflex. If you can work on breastfeeding with your baby, do it. Even if your baby is on tube feedings, come in before feedings and work on breast feeding. Be aware that there are tons of aids for complications with breastfeeding such as Supplemental Nursing Systems that you can talk to a lactation consultant at the hospital about and get help with. If your baby needs to bottle feed but has special complications with a bottle there are specialized bottles such as the Haberman Feeder with adjustable flow rates.

If your baby cannot drink anything by mouth, it’s still important to work on maintaining your baby’s sucking reflex if you can. I know that there is a lot of negative info out there about pacifiers, but this is one situation where a pacifier becomes a very good thing. Particularly if your baby is on a ventilator. When Jacqui was on a ventilator for six weeks as an infant, I kept a pacifier going with her as much as I could while she was awake. Most hospitals actually stock pacifiers and the majority of hospitals stock the Soothie brand pacifiers. There are several nice things about these pacifiers: Babies who often refuse other pacifiers will frequently accept a Soothie, the hub of the Soothie can be cut with scissors to fit around a ventilator tube, and they can be ordered attached to cute little stuffed animals (like Jacqui’s old duckie pictured above) called Wubbanubs, which can help keep the pacifier in place for your baby when you are not able to be in the NICU.

Maintaining your baby’s sucking reflex sets you up for an easier time transitioning to oral feedings later. If the sucking reflex isn’t maintained and your baby isn’t given any positive oral experiences, they are at high risk for developing an oral aversions: Low or zero tolerance for anything in or near the mouth, which can make the transition to oral feeding extremely difficult. If at all possible, encourage your baby to take a pacifier during any bolus tube feedings to help your baby associate sucking with the sensation of his or her stomach filling during a feeding. If you are able to do this, it can make the transition to breastfeeding or bottle-feeding so much easier. Even if your child doesn’t eat by mouth until much later (Jacqui wasn’t off tube feedings until age four), making sure your baby has some positive oral experiences while in the NICU will make everything from brushing teeth to learning to eat that much easier. Nurture that sucking reflex any way you can, if you have the option.

What About You? What picky eater tips or questions do you have? I’m looking forward to hearing them!

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For our first edition here, let’s just get acquainted. In whatever format you choose, write a post sharing who you are, the basics of your child’s story and one thing that really stood out to you from your child’s first major hospital or medical experience and why. (For carnival rules and information click here.)

Jacqui’s Story

So much was riding on that one day — all of our dreams, years of heartbroken prayers, hopes still fragile from years of infertility and repetitive miscarriage. It was all coming down to this one sunny day in September, and we wondered as we drove to the hospital that morning how it would end. We cried through the entire thirty minute drive to the hospital, not knowing if we were going to be saying hello or goodbye. Would we hear her cry? Would she need to have a trach? Would she breathe at all? Would we get to hold her? What if…? But I couldn’t bear to finish the thought of my worst fear.

Months earlier we had learned the devastating news on an early ultrasound. Our baby had a large mass on the right side of her face and neck. Opinions were mixed on the actual diagnosis. Originally we were told that we would likely miscarry, that she probably had Turner’s Syndrome. That she might have Down’s Syndrome, Trisomy 18, or a host of other complications that we lost much sleep over. Later we were told that the mass was a teratoma and that she would likely die at birth or during a surgery to attempt to secure an airway. We were pressed to consider ‘termination’ or at the very least, an amnio. We adamantly refused both. We began fighting to find a perinatologist who cared whether she survived and found one a three hour drive away. A complex birth plan and monitoring system was put into place to give her the best odds possible for her survival. A modified EXIT procedure would be performed in an attempt to make sure she had a secure airway throughout the birth.

In the OR suite, I lost count of the number of medical personnel in the room at somewhere over twenty. There was the perinatologist’s team, a surgical team, an ENT surgeon and his team, a respiratory therapy team, a NICU team… and probably others. I felt conflicting emotions of resentment over the number of people in the room (mostly because this birth was so different than we had hoped) and overwhelming gratitude that so many people were there to help try and keep our baby safe. And I started to quietly cry when they told me they were starting the delivery, wishing I could keep her safe just a little longer, hoping — praying that she wasn’t about to die.

I remember hearing a funny little squeak, and wondering what it was. I looked up from my white knuckles to Ken’s awestruck face that suddenly burst into a mile-wide grin. That sound had been our baby’s first beautiful cry. Her second attempt was loud and long. They held her up for a moment for me to get my first glimpse of her. I laughed as tears rained down my cheeks and Ken joyously whooped, “Do you hear her, honey? She made it! She’s OK!”

Then the room was a bustle of serious, purposeful activity. I watched from an aching distance while they intubated her as a precaution, and started an IV. Ken whispered reassuringly in her newborn ears as she tightly gripped his finger. They wheeled her over for a moment and I got to stare into her bottomless ocean-blue eyes and whisper, “I love you, Jacqui…” before they whisked her off to the NICU.

Much of the rest of our hospital stay was a blur. Back and forth trips to the NICU, several floors away from my room. Waiting for what seemed like forever as she endured a CT scan and an MRI before we learned that her mass was a lymphatic malformation, and something that we would not be able to medically address until she was at least six months old. The moment of elation when they took her off of the ventilator and she breathed on her own. Struggling through the paradox of being told we couldn’t remove her from the NICU until she could eat on her own while the nurses stuffed her with tube feedings under medical orders. Worrying over her very scary breathing pattern.

Her breathing. That is the one thing that stood out to me more than anything during that first hospital experience. It was so labored sounding. She snored and often stopped breathing all together, resuming only after she was jostled. I was afraid to leave her in the NICU, but they did have her hooked up to a cardiac monitor. I asked the attending physician about it and he told me there was no cause for worry. That newborns often sounded like that. She was just “junky” from the birth and it would clear up in a few days. A dark cloud of doubt gathered in my heart as I cautiously sat back to watch and wait.

When it was time to go home, her breathing hadn’t improved. She scared me. I was afraid I would fall asleep and she would stop breathing and never wake up. I asked the attending to send her home with an apnea monitor. He refused. Flat out emphatically refused. Even when I tried to press the matter. Said she was fine and that she didn’t need one. I asked if the lymphatic malformation could swell up like lymph nodes do if she caught a cold. He shook his head no. Told me I was worrying too much, but something in his eyes as he said it unsettled me. He left and I tried to pinpoint what it was about the conversation that bothered me. The substance of it flitted just out of reach from my sleep-deprived brain. In my arms, Jacqui sputtered and stopped breathing for the hundredth time. I jostled her and she inhaled raggedly. “What if…,” my heart whispered, “What if he’s sending her home with you to die?” I went cold. Numb with fear. Then I flashed white hot with determination. Not if I could help it.

After we got home, we took shifts sitting up with Jacqui keeping her breathing until our appointment with her pediatrician the next day. As we walked into the office the next morning I whispered to Ken, “We come home with an apnea monitor, or not at all.” We got our apnea monitor.

One week later, that apnea monitor saved her life. Jacqui caught her first cold virus. In the middle of the night, her lymphatic malformation began rapidly swelling and shutting off her airway, just as I had feared it might. Her heart rate monitor alerted us and we got her to the local ER just in time to intubate her before her airway was completely shut off by the swelling.

Jacqui spent the next nine weeks in the NICU. Six weeks on a ventilator. She had a tracheostomy. A G-tube placement. MRI’s, CT scans, IV and PICC line placements, CT guided injection therapy of her lymphatic malformation. A host of heroic and horrific experiences that no newborn should ever have to endure. That no parent should ever have to watch.

And it was just beginning.

Jacqui is five now. She’s been under anesthesia for various surgeries and procedures twenty-five times now. Twenty-five, and I know in my heart there will be more. And it never gets easier. And I worry. I worry whether we have made the right choices for her, whether tomorrow will bring some new hardship for her to endure.

But mostly I’m grateful. Grateful that for some reason that I still fail to comprehend, God chose us. For some reason, He believed we were the right parents for this amazing little girl. It humbles me. Inspires me to live up to that sacred trust we have been given. Because of her, our life is filled with a joy all the more precious for the sorrow we have known through her. And in those moments where I long to completely give up, I remember that she was a gift. A gift that I was entrusted with. She is counting on me and I refuse to fail her.

What About You? Tell Me Your Child’s Story…

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Just a little reminder… It all starts next Thursday, so get those posts ready and see you here on the 24th!

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The Finding Courage Through Sharing Blog Carnival is officially ready for launch!

Finding Courage Through Sharing will be now be a monthly blog carnival hosted at In The Life Of A Child on the last Thursday of each month. Mark your calendars because you’ve waited long enough! The very first edition will be this month on Thursday, April 24th.

Now I bet you have some questions… yep… I thought so. I see that hand!

So, what is this all about?

Oh, I’m so glad you asked! Through blogging, I’ve become aware of a large community of parents struggling through extreme medical challenges with their children. The purpose of this carnival is to give these parents a voice, a place to connect, to grieve a loss or a setback, to share a concern, a frustration, or to share those rare and wonderful triumphs… and to begin trying to heal. It is meant for any parent who has been through any form of medical challenge with their child, and also for those who are still in the midst of facing those challenges.

So, where do you fit in?

Me? I’m one of those parents. I’ve been there. I get it. I’ve seen my child code in the NICU, and again in an MRI suite. I’ve done that emergency trach change all by myself as my child turned blue before my eyes. I know what it feels like to not be able to hold your baby because of all those wires and tubes blocking any chance of a cuddle. I’ve fought with those insurance companies while I was ready to drop from exhaustion so my child could have a shot at life. I know what it feels like to get up every ten minutes throughout the night to alarming feeding pumps and apnea monitors. I know how intimidating those laundry piles look when your child suffers from insanely relentless reflux. Just take a peek at Jacqui’s Story and you’ll know why I have a heart for this sort of thing.

How is this going to work?

On the 15th of every month, I will post a topic for the month so you can start working on your post if you choose to participate. Then on the last Thursday of the month come back here and you will find a post entitled ‘Finding Courage Through Sharing Blog Carnival ~ April 2008′, or whatever the current date is. The first part of the post will contain my post contribution and at the end of the post you will see a little “Mr. Linky” box that looks like this:

In the first blank in the box, enter your name or your screen name. In the second blank box, enter the URL (Uniform Resource Locater, or web address) of your post. This is different from the web address of your blog. To find the web address of your post, simply click on the title of your post in your blog then look up at the top of your screen in that first really long white box up there. The URL of your post should start with “http://”. Copy that whole line and paste it into that second blank in the box at my place. Then click enter. Your link will now show up in my post. Note that it will say “delete link” next to your name, but don’t worry… you are the only one who can see the “delete link” next to your name. Since you are the author of the link, it gives you the option to delete what you just posted if you choose to. Finally, scroll down and leave a comment with anything you have to say (hopefully nice) about my post and you can leave a brief note about your post there as well, if you like. Some people like to leave a link to their post in the comment too, and you are welcome to do so. Then go start clicking on some of the other great posts that start showing up and share a few tears, hugs or a good laugh. Make some new friends, or get to know some old friends better. Find the courage to get up in the morning and start the day over again… that is what this is all about.

Are there any rules?

Oh, don’t be silly… of course there are rules. I’m a mom… rules are what I do. Don’t worry… they won’t be too hard.

1. Please keep in mind when you are writing posts for this carnival, that In The Life Of A Child is “family friendly” blog and I work very hard to keep it that way. I reserve the right to remove links to posts which include offensive or inappropriate language, or those containing rude, or objectionable content. I will always make an effort to contact the author of such a post, refer them to the participation rules, notify them that their link has been removed, and offer them the opportunity to reformat their post for re-submission.

2. Please mention the Finding Courage Through Sharing Blog Carnival in your post, and publish a link back to my master list here at In The Life Of A Child. Please make sure you link specifically to the URL for my blog carnival post for that month and not just to my home page.

3. You are most welcome, and I encourage you to publish the button code provided below in your entry post and/or your sidebar, but it is not a requirement. It just helps spread the word so that more parents will be interested in joining in. (And you’ll have my undying gratitude!)

Get The Code For The Finding Courage Through Sharing Blog Carnival Button:

(Just copy the code below and paste into your post or sidebar template)

<br /> <a href='http://inthelifeofachild.com/index.php/home-of/' title='Finding Courage Through Sharing Blog Carnival'><img src='http://inthelifeofachild.com/wp-content/uploads/2008/02/cmcblogcarnivalimage.jpg' alt='CMCblogcarnival' /></a><br />

(Note: You won’t be able to see this code if your are viewing this post in a reader. It will just show up as a second button… you’ll have to actually come over to my place for the code ~ sorry!)

If you need more detailed help on how to add images to your post, click here.

4. Please only leave a link if you have written a post specifically for this carnival. Empty links, spam links or links that are off topic will be deleted.

5. Please link specifically to your Finding Courage Through Sharing post, not to the front page of your blog. This is called a permalink and you can click here for an explanation of how to set one up and why this is important.

6. I prefer to keep things simple, with In The Life Of A Child as the only home page for Finding Courage Through Sharing and have registered it through Mr. Linky as a private meme. Please do not attempt to host a copy of Finding Courage Through Sharing at your own site using your own “Mr. Linky” account.

What is the topic for April?

After April, I will be posting the topic for the month on the 15th of each month, but this month you get to see it early. For our first edition here, let’s just get acquainted. In whatever format you choose, write a post sharing who you are, the basics of your child’s story and one thing that really stood out to you from your child’s first major hospital or medical experience and why. I’ll put up a reminder post this month one week before the 24th so you don’t forget. Click on the “Subscribe” button in the upper left corner of my blog and you’ll make sure you never miss an update. Sound like a plan? Ok then… start writing, spread the word, and we’ll see you back here on the 24th!

And coming to you on the second Thursday of every month, beginning May 8th… The Picky Eaters Club!

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Well, we are all still sicker than sick around here, but I’ve had this post rattling around in my drafts for a couple of weeks, so I thought I may as well post it… and incidentally introduce you to a couple of fabulous Gluten-Free bloggers… Seamaiden, at The Book Of Yum, and Karen, at Only Sometimes Clever.

Seamaiden, at The Book Of Yum, runs a wonderful Gluten-Free blog that I am just getting to know and is hosting an “Adopt A Gluten-Free Blogger” web event this week to get everybody cooking and swapping those favorite recipes. I’m really looking forward to taking a closer look at her recipe archives once we’re feeling better around here!

And… in honor of our week of horrific hacking and coughing, I’m going to share with you our family’s favorite new twist on chicken soup. It comes from one of my absolute favorite Gluten-Free bloggers who I am officially adopting for this event, Karen, at Only Sometimes Clever. Karen is a wealth of gluten-free know-how and is either the author or inspiration of many of our family’s favorite recipes. I love her creativity with her recipes and she is wonderful about answering questions if you’re just getting started. Whenever I find myself in a gluten-free menu rut, I head over to Karen’s to see what she’s been up to and I’m never disappointed. I’ll always have a soft spot for Karen… her sugar cookie recipe was my very first success story in my adventures in gluten-free baking. (I nearly cried in relief after those cookies came out of the oven… a gluten-free recipe that actually worked!) So here you have it… yet another gem from Karen:

Korean Chicken Noodle Soup (From Karen at Only Sometimes Clever)

This soup has been a wonderful addition to our family’s meal rotation! It is easy to prepare, cost-effective, wonderful tasting, and a hit with our very picky five-year-old. The accolades in our house just don’t get any better than that! For Karen’s original recipe, please click on the recipe title above the photo or on this link here.

The ‘noodles’ are a Korean pasta known by a number of names: rice cakes, ddeok guk ddeok, rice ovalettes, dduckgook, duk-guk, and many more. They are something I would have likely never been brave enough to try on my own, but boy would we have missed out! They are made from sweet rice flour and the oval pads cook to a soft and pleasingly chewy texture. Jacqui, The Queen of Dinner-time Doddling, snarfs them down as if she fears any moment I will yank them from her plate… which left me stunned and exceptionally pleased! I found them at our local Asian market in a large two-pound bag for $2.39 and we had a lunch and two dinners for three out of the recipe. I picked up the baby bok choy at the Asian market too… a large 1.5 lb pack for $0.79 verses $5.98 for the same amount at our local specialty grocer’s.

Now, I’ll tell you how I modified the recipe to suit our family’s tastes…

I did everything exactly as Karen suggests in her recipe with a few exceptions: 1) I skipped the Nori 2) I used Pacific Foods Chicken Broth for the base. 3) Our family loves garlic, so I went on the heavy side with the addition of garlic to the soup, and 4) I added some sea salt to taste.

I skipped the Nori (because my family members are not seafood fans) but I’m sure it’s a fabulous add if seafood is your thing! I used the Pacific Foods brand chicken broth for the stock because I haven’t been able to locate any bullion base in my area that is both gluten-free and casein-free. I did find a version of the “Chicken Better Than Bullion” that Karen mentioned in her post, but the only one I found, while gluten-free, had whey in it. So looks like I’m stuck with either the giant cartons of broth or making my own stock for now.

The soup as prepared for our family has a wonderful garlicky chicken taste that blends nicely with the unique texture of the noodles. An added plus: Jacqui has declared that she loves bok choy… score one for vegetables! Thank you Karen, for helping us transform our chicken noodle soup from ho-hum to heavenly! And thank you, Seamaiden, for this wonderful event to meet other gluten-free bloggers and discover some great new recipes.

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