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!

parenting children motherhood Picky Eater’s Club getting my child to eat In The Life Of A Child medically fragile tube feeding trach ventilator G-tube blog carnival blogging community

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…

parenting children lymphatic malformation tracheostomy G-tube sclerotherapy motherhood Finding Courage Through Sharing Blog Carnival Finding Courage Through Sharing NICU medically fragile blog carnival

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

parenting children motherhood Finding Courage Through Sharing Blog Carnival Finding Courage Through Sharing NICU medically fragile blog carnival

Image Courtesy Istock Photo

We’re starting to see the clouds parting on this last CVS episode… little glimmers of Jacqui peeking through the fog now and then.

During one of her brief ‘awake times’ today, she mentioned that she might be interested in eating tomorrow…

“Mommy… I fink maybe I will like to eat a snack tomorrow.”

I peered down at the sleepy head in my lap and smiled. “Well, that would be great! What do you think you would like to have for a snack?”

She arched an eyebrow and gave me a fleeting glimpse of a sleepy dimple. “Hmmmm… how ‘bowwwwwwt… SUSHI!!”

“Sushi??” I was completely thunderstruck. The word ’sushi’ is never uttered at our house. We’re not sushi people. We’re not any kind of seafood people. Not even fish-stick people. Maybe a-tuna-sandwich-now-and-then people, but definitely not sushi people.

She flashed a toothy grin up at me and repeated, “SUSHI!”

“Do you even know what sushi is?”

A comical attempt at a serious scowl crinkled her brow as she answered, “Course I do. Itsa kinda not-cooked fishy. Probly reely slimy. Don’t worry, it won’t make me gag too much. Yummy!” She made a loud slurping noise for emphasis.

I just looked at her in stunned and bewildered silence.

“You’re ‘posed to squish your eyebrows all up like you’re mad and say, ‘Ha, ha. Very funny’ “.

I was completely lost. “What??”

She sighed in dramatic frustration. “I was bein’ sour-catty, Mom.”

I rubbed my temples trying to locate a fragment of the conversation that I could make sense out of. “You’re what?”

“Mooooom! Sour-catty… you know… it’s like a not-funny joke. Wen sumbuddy is bein’ sour-catty, you’re all-ays ‘posed to say, ‘Ha, ha. Very funny.’ Like dat. But only don’t laugh. Now you say it.’

“Sarcastic? You’re being sarcastic?? For crying out loud — you’re five…”

“Mom. Pay da tenshun. Say, ‘Ha, ha. Very funny.’ ”

“Ha, ha. Very funny.”

“Dat’s better. Sometimes you take a very long time to figger thins out, doncha?”

… Ha, ha. Very funny.

parenting children motherhood kids sick day CVS cyclic vomiting syndrome G-tube feeding tube tube feeding nissen nissen fundoplication surgery SAHM

One of the snuggly comforts of winter in our house are hot water bottles. I’m honestly surprised that so few people own them these days… I wouldn’t trade mine even if someone demanded it as ransom for one of the four pillows I insist on sleeping with (a source of much mocking in our house, but that’s another story). However, I am not taunted about my fondness for my hot water bottle… because when the temperature in our corner of the world drops, my feet turn into icebergs. I often joke and tell Ken that his marriage vows to me were to “love, honor, cherish, and warm thy feet for as long as we both shall live.” Ken doesn’t find this humorous in the slightest. Let’s just say he’s more than willing to pass the responsibility of “foot warmer” along to my hot water bottle.

Problem is, I like the water in mine REALLY hot. So it stays warm all night. So instead of wrapping it up in a flour-sack towel like I had for years, I finally decided to make a cozy for it last winter. And it was so simple! For the standard hot water bottle, I used a nice soft piece of flannel, and cut out two rectangles sightly wider and a few inches longer than the bottle. Then I sewed them right sides together, leaving the top open like a bag. After turning it, I hemmed the top edge, then turned it back inside out.

I then pinned a strip of flannel about 1 1/2 inches wide, flat around the circumference of the bag at the height the neck of the hot water bottle would be when placed in the bag. I sewed each edge of the strip to the inside of the bag so that there was about one inch between the parallel seams.

I turned it right side out again, then snipped two small holes in the front just through the first layer of fabric between the parallel seams to thread the draw-string ribbon through. You could be fancy here and sew button holes as your very first sewing step, but I didn’t bother… I’ve never been fond of sewing button holes and my ancient sewing machine has been less than cooperative in this task. My last step was to tape a length of ribbon to a short dowel and thread it through one hole, between the parallel seams and then out the other hole to form the drawstring. I also knotted the ends of the ribbon so they wouldn’t un-ravel. Voilà! Hot water bottle cozy and toasty warm winter feet!

I made a heart-shaped variation for my daughter Jacqui. She has a rare condition called Cyclic Vomiting Syndrome which results causes a lot of abdominal pain for her. A hot water bottle has been a real comforting item for her so we ’splurged’ on a heart shaped one from Victoria Trading Co.

She loves her heart bottle, but wasn’t so fond of the cover that it came with. I let her choose the material for making a new cover and she was torn between two fabrics, a soft flannel and a cotton princess crown print. So I got both and made her cover reversible. She loves that she can decide if hers is “soft” or “princess-y” as she says.

To make a reversible cover, follow the same first steps, cutting two sides from each fabric in the appropriate shape with the seam allowances and extra fabric for the top of the cozy. Sew each matching set of fabric right sides together leaving the top open like a bag. Turn one of the sets, leaving the other un-turned. Tuck the unturned bag inside the turned bag, smoothing it so the seams match up. Fold the top edges of each bag inward towards each other, pinning as you go. Sew the top edges together, close to the edge of the fabric.

Measure out where the neck of the hot water bottle will hit and then sew your two parallel seams just like with the single layer cozy, except this time you don’t need an extra strip of fabric because you already have two layers. Snip two holes in the front between the parallel seams and thread your drawstring ribbon, knotting the ends. Then turn the cozy to the reverse layer and snip two holes on the opposite side between the parallel lines for your drawstring for the reverse layer. Thread the ribbon drawstring, knot the ends and you are done!

For more Winter Bazaar ideas, visit Scribbit

Special thanks to Corey at Living and Loving Every Minute of It for inspiring me to finally start posting some of my half-done posts from my over-stuffed drafts folder! sewing crafts hot water bottle cozy crafts winter bazaar Scribbit’s Winter Bazaar CVS cyclic vomiting syndrome