Grow Simon Grow! #feedingtubeawareness

This week is Feeding Tube Awareness Week, and I am happy to welcome Julie Reba Switala to the blog to guest post this week! Julie is the owner of Adorabelly Design and mother to her own adorable tubie, Simon!

Half a million children and adults in the United States alone rely on feeding tubes, a number that is expected to increase by eight percent over the next three years. Feeding tubes are not just for those at the end of life, they provide necessary nutritional support for children to live, grow and thrive. There are well over 300 conditions and diseases that can require tube feeding in children.

Feeding Tube Awareness Week
I want to thank Julie for sharing Simon’s story with our readers, and encourage you to visit their GoFundMe page and help Julie and her family as Simon gets the treatment he needs!


Grow Simon Grow
I consider myself amazingly lucky. I’m the proud mother of two children, one of whom has special needs. It took me a really long time to be able to say that. I’m proud. I’m proud of both of my children. My baby has special needs. Special. Needs.
Simon was born after a difficult pregnancy, during which I was on bed rest for 19 weeks. For more than 130 days, I laid on my left side in bed. I imagined my baby. I imagined what he would look like. I imagined his eye color and hair color and whether or not he’d have my freakish toes. His eyes are blue. His hair is blonde. And yes, he has my hobbit toes. I imagined him, I worried over him. I worried he’d be born too soon. I worried his lungs would not be ready. I worried all day and all night as I laid in that bed. Never once did I worry my son would have “special needs.” Never did it cross my mind that my son would be born without the ability to eat. Never did it cross my mind he’d not have normal self-preservation reflexes. Never did I imagine the words “Failure to Thrive,” “feeding tube,” “sensory processing disorder,” or “dysphagia.” But now I have and this is our story.

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Simon Jay was born at 37 weeks, 5 days. He was induced, due to life-threatening complications to my health. Simon was stubborn, as he didn’t arrive into my arms for 22 hours. Twenty-two very long hours of labor.

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Simon was beautiful. He was 6 lbs, 6 oz, 19 inches long. My love for him was immediate, pure, and devastating. Simon came home with us but immediately I knew things weren’t right. He was not able to nurse or take a bottle. Simon lost a startling amount of weight and slept more than 22 hours a day. Our new baby boy did not smile.

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I sought help and I thought I was losing my mind. I called everyone: our pediatrician, nurses, and multiple lactation professionals. Finally, a lactation nurse listened to me. She saw my concerns and she agreed. She was the catalyst to our getting a new Pediatrician and to Simon’s first hospital admission. Simon was admitted to Children’s Hospital at 4-weeks-old for Failure to Thrive. He was in the hospital for three days, and then transferred to the NICU for another week. Failure. To. Thrive. This was his first admission. Of many. So many.

 

Failure to Thrive means just that my son was not thriving. He was barely living. He could not eat. He vomited every ounce of breastmilk or formula that he was given. He was so thin it was scary. I could encircle his thigh with my thumb and forefinger. It took him almost 5 weeks to get back to his birth weight (6 lbs, 6 oz). Simon did not grow. Simon still does not grow.

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Failure to Thrive is a term that strikes panic, fear, and an overwhelming sense of failure into my heart. My tiny baby wasn’t growing. I was sure that it was my fault. I was breastfeeding. Then I was pumping and providing my milk via bottle. Eventually, I was pumping and providing my milk via a feeding tube.

In July 2013, after Simon’s 4th admission for Failure to Thrive, he received his first Feeding Tube. It was an NG tube that went through his nose into his stomach. It was awful. My son’s beautiful face was covered by tape and that horrible tube. He screamed so hard when they put it in that he broke blood vessels in his eyes. We were told he would need it for only a month, so he would be strong enough to eat. Five months later, dozens of times we had to reinsert the tube, but he still was not thriving.

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After a second opinion with another hospital, Simon then received surgery for the placement of a permanent feeding tube, called a g-tube,” in November, 2013. He was eight-months-old.

Simon has a hole to the left of his belly button where his “mickey button” now is. It very much resembles the piece in a beach ball that you blow up. For Simon’s though, we use tubing, a pump, an IV stand, a medical bag, and special formula. We plug him in and he receives his nutrition via a tube.

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My baby has a feeding tube.

My baby has a feeding tube, and I’m proud of it. I’m proud and thankful because this little device has saved my son’s life.
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Simon is almost 2years-old. He is rambunctious and the happiest child I’ve known. Simon is full of pure JOY. He smiles all day. He’ll blow you kisses and sometimes he’ll wave. He adores everyone. And frankly, everyone adores him.

Simon is almost 2years-old. Simon is very small. He can’t pucker his lips to give a kiss. His cognition is a year behind. He rarely speaks, and when he does most people don’t understand what he says. He doesn’t have self-protective reflexes. He doesn’t put his hands out when he falls. He tries to harm himself, almost constantly. He doesn’t respond to his name. He doesn’t feel hunger.

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My son has special needs. Failure to thrive. Gtube dependent. Sensory Processing Disorder. Under-registers (doesn’t feel) pain. Speech delay with limited auditory comprehension. Feeding disorder. Mixed receptive-expressive language disorder and oral motor dysfunction. Dysphagia (inability to swallow). Developmental delays. But first and foremost – Simon is undiagnosed. After more than a dozen admissions to the hospital, being examined by more than 60 doctors, visiting two different hospitals, and running up hundreds of thousands of dollars in bills, doctors still have no idea what is wrong with my son. He has special needs.

Simon has been in a Feeding Clinic with his local Children’s Hospital for six months. During this time, he has shown no/very little improvement in his abilities to eat. His doctors feel his best chance is an Intensive Feeding Program. This will be 8-5, Monday-Friday, in the hospital. Teams of doctors will try to get him to eat by mouth. Our nearby hospital has a two-year wait list for this program. We’ve already been working for two years through his struggle. His doctors have referred him to the Intensive Feeding Program out-of-state, five ½ hours away. Our family will be separated for the 6-8 week program. Medical bills will pour in and our sacrifice is great. But this program has an 89% success rate. This is Simon’s chance.

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 Simon is special. He lights up a room when he smiles. When he reaches out to you, your heart melts. Once in a great while, he will put his arms around you tight and give you a hug. This child is special. I believe things happen for a reason. Simon’s reason is so we can help other people: through our business Adorabelly Design, through Feeding Tube Awareness, and through acceptance of those different from ourselves. This child is meant to change the world.

And he has already changed our world.

I consider myself amazingly lucky.

Please read our story. Please share our story.
#growsimongrow

 

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11 comments

  1. smchezem@gmail.com'
    stephanie says:

    This amazing little boy was blessed with two amazing parents and a fabulous older brother….all of their sacrifices have been great……but Simon is resilient and such a trooper! His smile lights up a room and his personality is enormous . …his presence is happiness and he radiates it to everyone….I believe Simon is a blessing!

  2. vanweeldmegan@gmail.com'
    Megan says:

    What a strong and loving mom! I nannies a child with multiple issues, like Simon, including a g-tube. It is very challenging. I
    Praying this feeding program works!

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