Sunday, March 30, 2008

Power of the Pen

The following article about Kyle ran in our local newspaper last month. I thought those of you from out of town that keep up with Kyle might enjoy it...

Power of the Pen: Premature infant marks first birthday

by Andree Niswander, reporter

I'm sitting here looking at a pen.

As a writer, this ink-filled instrument is essential to my work. It's probably the most powerful tool I use every day ... well, that, and my computer. Every quote ever taken and every story ever written first fell from some little, unassuming pen.

That's probably why there are lots of them in one little compartment of my desk drawer. Most of them work, and some don't. Some are red, and others black. Some have caps, and some, sadly, have chew marks. Regardless of their present state, these pens play a fairly big role in my day-to-day work. And yet, all of them are tiny enough to get lost in the abyss called my purse or into the car seat, never to return.

Despite its importance in my life, the pen doesn't usually get a second look from me. But today is different. I can't stop looking at this pen, and that's because it's not just any pen that has captured my attention.

I'm looking at a newborn photo of Kyle Kupiec, born four months premature last February to Stow residents Joe and Jennifer Kupiec during an Orlando vacation. In the photo, Kyle's lying in a bed in the Neonatal Intensive Care Unit at Florida Hospital South, and in the foreground, his father holds a pen to demonstrate the size of this tiny, little, tape and tube-covered body.

A pen ... not a yardstick, or even a ruler. The comparable measuring tool for Kyle one year ago was a pen. And in the photo, he's not much longer than the pen.

Suddenly, the pen doesn't look so little ... or significant.

I am without words, even with the drawer full of pens. For a writer, that's fairly unusual.
I'm struck by this powerful portrait.

How could such a tiny, frail baby survive? And yet he did. This week, Kyle turned 1.

No longer a 1-pound, 6-ounce, pen-sized preemie, Kyle survived three surgeries in his first six months on his heart, eyes and bilateral hernias, 69 days on life support and ventilators, a weight drop to just 18 ounces, 11 blood transfusions, pneumonia, numerous infections, and 119 days in the hospital.

He's been home for eight months, weighs 16 pounds, and he is thriving, according to Jennifer.

Born with a hole in his heart, Kyle had a surgery when he was just 2 weeks old to repair the problem. He'll always have a metal clip in his heart, she said, "but his heart's fine. He can do everything ... He can have a normal life."

With 20-20 vision, Kyle really has eyes for his big sister, 8-year-old Madison, said Jennifer.

"We've always said that his sister is his favorite toy, ever since he came home from the hospital. When she walks in the room, he just lights up," she said. "She's a great big sister."

To keep friends and family posted on Kyle's past and present progress, his parents created a Web site,

This week, the family will return to Orlando, a trip that will include a hospital reunion, with doctors, nurses and another family whose child was in the facility with Kyle.

The Kupiecs also plan to visit Disney World, and to provide dinner to current residents of the Orlando Ronald McDonald House, the Kupiec's second home during their four-month stay, said Jennifer.

The family also takes meals to Akron's Ronald McDonald House.

"When you have a child faced with a life-threatening medical crisis, life can become very stressful, very quickly. Added to the mix, we were 1,000 miles away from home. We are so thankful to the Ronald McDonald House, for providing us with a home away from home," she said.

With his pen-sized beginning, Kyle definitely has made a mark on the Kupiec family, said Jennifer, "We're complete, and we're just so happy. With everything we've been through, not knowing if he'd survive, everything he does, we just appreciate it. We take nothing for granted. We feel blessed to have him here."

Wednesday, March 26, 2008

March 26, 2008

I have FINALLY figured out how to upload video onto the blog! We took this video of Kyle on Easter -Grandma Pattie is cheering Kyle on as he tries to figure out how to crawl. Enjoy…

Friday, March 21, 2008

Good Friday

The following was orignally posted on Friday April 6, 2007. I thought I would "recycle" my Good Friday post from last year.

Good Friday
The death of Jesus:"From the sixth hour until the ninth hour darkness came over all the land. About the ninth hour Jesus cried out in a loud voice, "Eloi, Eloi, lama sabachthani?"—which means, "My God, my God, why have you forsaken me?" When some of those standing there heard this, they said, "He's calling Elijah." Immediately one of them ran and got a sponge. He filled it with wine vinegar, put it on a stick, and offered it to Jesus to drink. The rest said, "Now leave him alone. Let's see if Elijah comes to save him." And when Jesus had cried out again in a loud voice, he gave up his spirit." Matthew 27:45-50
Good Friday really does have a different feel, doesn’t it? It’s somber and reflective; there is a grand celebration on the horizon (this coming Sunday), but today is different. Today we aren't visited by the Easter Bunny, we don’t exchange gifts or buy cards. Today we reflect on the cost of our salvation.
Kyle and Daddy were reunited...and celebrated the occasion by Kangarooing this afternoon! Joe was pleasantly surprised by how big Kyle has gotten. Kyle's weight is up to 2lb 5 oz. He has actually doubled in size from his lowest weight (not his birth weight) one point Kyle was down to 1lb. 2 oz.
We received the results of one of Kyle's tests, and he takes after his great grandpa Ted, in that he has Reflux. Reflux is when liquid from the stomach comes back up the esophagus (food pipe). The doctors discovered that Kyle's milk has been coming back up and entering his lungs, which has contributed to his increased breathing difficulties lately and most likely his bouts with Pneumonia. To treat his reflux, the doctors changed the positioning of Kyle's feeding tube. Instead of going directly into his stomach, the tube now goes directly to his intestines. Also, Kyle has been put on continuous feeds. Instead of being fed every three hours, Kyle will continuously have a small amount of milk pumped into him. Reflux is a condition that Kyle should grow out of. The muscles at the lower end of the esophagus should become tight keeping the food from backing up. In premature infants and even some term infants, these muscles are not yet fully developed and coordinated, but should be soon.
I won’t wish you a “Happy Good Friday,” because even anticipating the joy of Christ’s resurrection, this isn’t a happy day. Instead, I hope you’ll have a reflective Good Friday. In two days, when we celebrate the most amazing event in human history, our greetings of “Happy Easter!” will be all the more meaningful if we’ve first taken time to ponder the sober message of Good Friday.
Have a reflective Good Friday, then, and a blessed Easter.
Much Love,
Jennifer, Joe, Madison and Kyle

Tuesday, March 18, 2008

March 18, 2008

"Took branches of palm trees, and went forth to meet him, and cried, Hosanna:Blessed is the King of Israel that cometh in the name of the Lord."~John 12:13~

Poor Kyle has had a rough week. He had his one year check-up last week, where he received 4 shots. His body did not react too well to the vaccinations and as a result he had a fever for a couple days. Once he recovered from that, he developed a cold which progressed to an ear infection. Fortunately, this weekend he was finally back to his smiley self. As far as his one year check up went, overall the doctor was very pleased with how well Kyle is doing and said we are very blessed. The good news is that Kyle is finally on the growth chart – at 27 ½ inches long he is actually in the 50th percentile for height for his adjusted age of nine months and in the 20th percentile for his “birth” age of 1 year. The not so good news is that his weight gain has slowed down considerably…Kyle weighed in at 16 pounds 1 ounce, which wasn’t even on the chart. Actually, he was 16 pounds 1 ounce naked during his one year appt., when we took him back a few days later for his ear infection he had lost a little weight and was 16 pounds even with all of his clothes and a diaper on. To give him a boost, his pediatrician has switched his formula and changed the type of thickener we use in Kyle’s bottles. If you remember, Kyle’s bottles are thickened to the consistency of honey – the thickener we had been using did not have any caloric benefit, but his doctor just switched Kyle to a thickener that will add 5 calories per ounce. I am hoping this is the boost he needs.

We had a great time in Florida. In addition to our reunion at the hospital, we made dinner for the guests at the Ronald Mc Donald House, went to the beach, Disney’s Magic Kingdom, Epcot and Rylee’s 1st birthday party. Kyle had so much fun playing with Rylee – as you can see from the pictures! As far as the parks go, Kyle actually enjoyed Disney World more than I expected. He loved the parade, especially the Spectro Magic Light parade at night – but his favorite part of Disney was Tigger. There was a “Meet & Greet” spot at the park where Tigger was for most of the day. Kyle would have been content to spend the whole day there just watching Tigger - he cracked up watching Tigger interact with the kids. Although I hate to admit this, but as much fun as he had at Disney World, Kyle became the most excited whenever we entered our hotel lobby. It was a beautiful lobby with high ceilings, a huge chandelier and 6 or 8 ceiling fans. For some reason Kyle was mesmerized by this chandelier and especially the ceiling fans, whenever he saw them he’d get so excited. Go figure – we take him all the way to Florida for the beach and Disney, but Kyle’s favorite part of vacation is the ceiling fans! Kids are easy to please at this age. I think for his next trip, we’re going to take him to Home Depot and let him go crazy in the lighting section!

Any day I hope to be posting that Kyle is crawling. He is soooooo close, but just can’t seem to put it all together. He gets up on his knees and with the most serious look on his face – he rocks and rocks. After thinking it all over, he takes off….but it is always backwards or in a circle. This leads to cries of frustration, then he gives up. One of these days he’ll get it.

As always, thanks for checking in on us!

God Bless,

Jennifer, Joe, Madison and Kyle

Wednesday, March 5, 2008

Florida Hospital

"They will celebrate your abundant goodness and joyfully sing of your righteousness." Psalm 145:7

We had such a wonderful time at our reunion at the hospital!!! What do you say to the people responsible for saving your baby’s life? What do you say to the neonatologists who sat by Kyle’s bedside waiting for the inevitable, hoping that statistics would overlook this one little boy. The doctors and nurses at Florida Hospital take God’s tiniest miracles and give them a chance at life.

Kyle spent the first 119 days of his life in the Newborn Intensive Care Unit (NICU) at Florida Hospital. During that time we certainly had some very long and sad days. But our time in the NICU was also filled with small moments of happiness, and even times of great joy, many of which were made possible and enhanced by the staff who worked with Kyle. I clearly remember the nurse who asked if I wanted to hold Kyle for the first time, and how much work they would do just to get us ready for kangaroo care...during his sickest times, it took two nurses and a respitory therapist just to get Kyle out of his isolette. I remember the care with which they taught us how to touch our baby, how to change his tiny diapers, how to take his temperature. I remember that when Kyle’s head was so tiny (the size of a tennis ball) and even the smallest hats in a store were much too big for him, a nurse had her grandma knit Kyle a hat. I remember a special nurse who would take pictures of Kyle doing cute things during the middle of the night, when I wasn’t able to be there, and taping them to his isolette to surprise me when I came in the next morning. I remember the respitory therapists and nurses that would hold Kyle’s hand and sing to him to keep his sats up while they got a blood gas. I remember doctors and nurses giving hugs and high fives when Kyle’s platelets finally went back up following a nasty infection. I remember nurses going above and beyond the call of duty to always make sure Madison felt included and praising her for being such a good big sis. I remember doctors and specialists listening to our endless questions, and sitting down with us to draw diagrams to help us understand complicated medical issues, never annoyed by our incessant attention to detail. I remember the nurse who helped me give Kyle his first bath. I remember nurses who were so excited when Kyle was able to finally wear clothes (at three months of age) that they went out and bought him an outfit! I remember them crying over the loss of another NICU baby, and how I realized then that these babies are so much more than a job to this NICU staff. They really and truly care about each baby and family, and they make each tough medical decision just as they would if it were their own baby. I remember that I felt loved…and I don’t think you can feel like that in the NICU of every hospital.

As hard as it was to be in Orlando for so long, I firmly believe that God had a reason for everything happening the way it did. I can’t say with certainty that we would have had such a positive outcome if Kyle had been born anywhere else. I can never express to them my gratitude for all that they did during Kyle’s 4 months in the NICU. They are a big part of who Kyle is today and I hope that they realize what a difference they make in so many families’ lives. Anyways, as you can tell from the pictures, we had an amazing time being reunited with the staff at Florida Hospital and it was definitely one of the highlights of our trip!

God Bless,

Jennifer, Joe, Madison and Kyle