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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This Christmas has been such a gift for our family - or I should really say, a lavish pile of gifts that we still haven’t finished unwrapping. Moment after moment, indelibly stamped on our hearts as we tug at the ribbons with smiles a mile wide. It has been the Christmas longed for, hoped for, prayed for. The one we wept over so many times in hospitals or while cradling a sick child in our arms as we lamented its loss.

Although we started out the Christmas season with pneumonia, strep throat, and ER visits, Christmas itself, was pure undiluted joy. We find ourselves still a bit heady with it, as it’s rather unfamiliar territory, but all the while willing ourselves not to be looking around for the threat of a dropping shoe. So we didn’t look for one - not even a tiny little peek. We just sat back and soaked it all in like dessicated sponges with our hearts full to overflowing. I can say, just as we have always said, even in the midst of tragedy, that God is good - and breathtakingly faithful.

And once again, I am unable to pick a single moment for Melody’s weekly “The Gift of Every Moment” post for December. So instead, I will share a virtual collage of some of our favorite moments that twirled into our beautiful Christmas with the individual beauty and whimsy of a flurry of Christmas snowflakes…

A beautiful Christmas Eve at Jacqui and Kyle’s great grandparent’s house - What a joy that I still have my dear grandmother to make Christmas memories with!

Christmas morning at Ken’s parents house - And Jacqui sneaking an early peek at the stockings!

Kyle peeking out the window at his second Christmas morning in the world.

Kyle making us laugh after finding an old pair of Grandpa’s glasses frames.

If it has wheels, it’s the best Christmas present ever! At least in Kyle’s book.

Late Christmas Morning at my parent’s house. Jacqui singing happy birthday to Jesus with her cousins, James and Jonathan. The cake was actually a gluten-free coffee cake I had made so that Jacqui and her Auntie could have something to nibble on, but it worked for a birthday cake in a pinch. As long as it was capable of holding up birthday candles, it was a birthday cake to the kiddos!

A rare flurry of Christmas snowflakes, like a made to order Christmas wish! A Currier and Ives moment that put a childlike smile in my heart.

Snowflakes are for making snowballs with and snowballs are for throwing - especially at Mom and Dad!

Christmas night at Ken’s parents house and a sleepy, but happy Jacqui.

Me trying to finish up the last of my traditional Christmas book… and failing quite happily.

Back home the day after Christmas - Jacqui falling asleep in Daddy’s arms during her bedtime story.

Stockings all ready for our family Christmas…

And a tree waiting for pint-sized early risers.

Princess Jacqui showing off her new dress-up dress.

Jacqui drew a picture for us of her “Christmas List” … which primarily consisted of a Disney Princess Talking Vanity.

Jacqui was one lucky little princess because Mommy just happened to see one at over half-off the sticker price during a 4-hour sale… or the Disney Princess Vanity would NOT have made an appearance at our house. Jacqui was blissfully unaware of the close call.

Even princesses enjoy a little off-road adventure now and then. Kyle only put up with it for a minute though before yowling, “MINE!! MINE CAR!!”

Over the weekend, we lost power and resorted to blanket forts and stories…

Although there were so many Christmas toys in the fort that there wasn’t much room for kiddos.

After the kiddos went to bed, Ken and I sat down to a few rounds of Monopoly by candlelight. I’m pleased to say that I trounced him - three times. He’s demanding a re-match this evening : )

Jacqui declared this to be, “the most wonderfullest magicallest Christmas ever!!” We couldn’t agree more - and the moments keep coming.

*****New Year’s Monopoly Update - Mandated by Ken…*****

So… my luck apparently ran out tonight. See all those hotels? All Ken’s. All in the low rent district, but he managed to completely shut me out of a monopoly of any property on the board. He owned the only two monopolies and promptly erected enough hotels to rival Las Vegas.

And here was my sorry hand… Nine mortgaged properties, one railroad, one ten, one five and one one. I accused him of being a slum-lord.

As you can see, this troubled him greatly.

Even my most pathetic pouty face couldn’t induce mercy and he gleefully forced the mortgage of my last railroad and then took my paltry sum of $116.00 and shoved me into bankruptcy.

Lucky for me he’s not the sort to gloat…

This post was written for the Wrapped Emotions writing prompt:

“Capturing the Gift of Every Moment”

Please click on the link below to visit Wrapped Emotions to see how other writers took on this prompt…

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This year, our family has a lot to be thankful for. For the first time in three years, we were able to spend Thanksgiving at home with family - instead of in NYC for one of Jacqui’s surgeries. While we are extremely grateful for Jacqui’s amazing surgeon in New York, we are even more grateful to not be in the Big Apple this year. So… in remembrance of just how far we have come in three years…

Thanksgiving 2005

Roosevelt St. Luke’s Hospital in Manhattan, where Jacqui had surgery to remove her Lymphatic Malformation

Jacqui after her 8 hour surgery

Thanksgiving Day 2005 in the Hospital

Jacqui giving her buddy, Cosmo, a check-up

Thanksgiving 2006

Jacqui looking out our apartment window at the Manhattan skyline

All four of us ended up in Roosevelt St. Luke’s ER with a horrible stomach flu, and Jacqui’s surgery was postponed while we recovered.

It’s no fun to be this sick in an apartment far away from home with two small children and a husband just as sick as you are.

Jacqui talking with her surgeon, Dr. Milton Waner, on the morning of her surgery.

A heart full of worries as we wait to take Jacqui back to the OR suite.

Jacqui in the recovery room after her surgery

Thanksgiving dinner in the diner below our apartment… while Kyle threw everything he could reach onto the floor. Fun times.

Watching the Macy’s Thanksgiving Day Parade in the Rain

It’s much more fun to watch it on TV from the comfort of your living room.

We went to FAO Schwartz to play on the giant piano and try to forget that we were missing our family’s Thanksgiving back home.

Thanksgiving 2007

We were with Ken’s family for Thanksgiving this year… Jacqui was so excited to see Grandma and Grandpa!

Coloring before Dinner

Ken enjoying a pre-dinner chat with his Dad

Family visiting around the table long after dinner is finished.

Kyle getting some last minutes of fun crammed in
before bedtime… playing with toys that Ken played with as a child.

Jacqui - Laughing and just enjoying being a kid.

We’ve come a long way in three years and NYC cannot begin to compete with the joy of a Thanksgiving spent at home with our family. Thank you Dr. Waner ~ For a Thanksgiving that was so worth the wait!

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