Hello! I just wanted to give you all the site where you can read Ava's article. It turned out Fabulous, as always. Here is the article. To see the pictures you can go to, The Hawkeye.
March is CDH Awareness Month
published online: 3/23/2009
Finding joy after pain
Ava Helmick has a peppy hitch in her step, and her grin is anything but shy.
Inside her house, the 2-year-old romps around the living room like any other child her age, but Ava is a little bit different.
She was born with congenital diaphragmatic hernia, meaning the muscle between her rib cage hadn't formed before birth and many of her organs were in her chest.
Doctors built her a fake muscle, putting a patch between her rib cage, and then put her organs where they belonged. When Ava came home for the first time, she was 3 months old.
She became a little girl like all other girls, watching "The Wiggles" and "Barney" and playing with her older sisters, Lexis and Emeline.
"I thought we were out of the woods," said her mother, Terri Helmick.
But on Oct. 4, 24 months after her birth, Ava reherniated. Her intestines literally tried to "eat" the patch between her rib cage, and it became lodged in her intestines.
Terri Helmick brought Ava to the doctor three times that day, knowing something was wrong and that Ava might have reherniated. As the day wore on, Ava became more irritable and started throwing up.
Doctors insisted Ava was fine and gave her antibiotics.
"She was lethargic by the end of the night," Terri said. "She wouldn't walk, and if she did, she'd crawl up in a ball and hold her stomach, laying in odd positions."
Ava's eyes turned dark and sunk into her head.
When Terri brought Ava to the hospital yet again, doctors finally showed Terri an X-ray of her daughter's stomach. Terri could see the intestines were up past her ribcage again.
"There wasn't much choice what to do," Terri said, who choked back tears in the hospital hallway.
Ava was flown to the University of Iowa Hospitals in Iowa City, where it was 10 more hours before doctors and nurses believed Ava had reherniated.
"They told us she 'might' have diabetes," Terri said, adding that despite her vocalized concerns, doctors were 99 percent sure Ava's patch was fine.
"It was in the afternoon the next day that they went to do a GI (gastrointestinal) test," said Brian Helmick, Ava's father.
The test showed Ava's intestines were completely obstructed, and she needed surgery to save them.
The 2-year-old was prepped for a three-to-four-hour surgery that turned into a seven-and-a-half-hour one.
"When she came out of surgery, I automatically thought of her NICU days," Terri said, "but she was bigger and struggling more."
A few days later, her incision became infected, her stomach began to swell and her heart rate increased to 200 beats per minute.
Ava wouldn't open her eyes -- she thought if she kept her eyes closed she could block out the pain.
"Her stomach got huge," Terri said. "I told my sister, 'They're gonna kill her.' Her stomach was like a balloon ready to pop."
Her intestines swelled to the point her right lung was being compromised and her bladder pressure was increasing. On Oct. 13, doctors were forced to open Ava's fresh incision to relieve swelling. Inside, they found Ava had an abscess, a clear-coating infection that antibiotics can't penetrate.
The surgeon pierced it and left Ava's abdomen open to allow the infection to drain.
At night, when the nurses were out of the room, Brian would take a flashlight and look into Ava's stomach. He could see the patch, attached with stitches to Ava's muscles.
On Oct. 21, Ava had her third abdominal surgery to place a wound vacuum assisted closure device and Hickman line into her body. The wound vac would drain the infection from Ava's body and the Hickman line would give Ava the drugs and calories she needed to help her heal.
When finished, Ava had one tube running out of her body near her heart, another came from the bottom left side of her belly, and a third came from the nearly 4-inch-wide and 5-inch-long incision doctors left open.
"The NICU was a breeze compared to this," Terri said. "Now, she's old enough to know she's in pain, and it's hard to explain we'll go home in a few months."
Ava did go home on Nov. 19 with enough medical equipment Brian said they could have used a FedEx truck to haul it. Brian and Terri received only an hour of training for all they would need to do to help Ava recover.
But both said Ava's healing really started to happen once she got home.
Terri became Ava's nurse, changing her central line and wound vac as needed for several months.
At the end of January, Ava went into surgery for her last operation. Surgeons repaired and removed portions of her intestines, closed her stomach wound and inserted a gastronomy tube to feed her.
"My mom says she's (Ava) like a cat with nine lives," Terri said. "She's a little scrapper."
That little scrapper now runs around her home, a just-her-size backpack connected to her g-tube on her back. When she climbs onto her pink trike, she puts the backpack in the "trunk" and speeds away.
"When she doesn't want to carry it, she lets it drag on the floor," Brian said, but since that's not good on the thin plastic line, someone else picks it up.
Now, the Helmicks are working on getting Ava's g-tube feeds to 1,000 ml per day so the Hickman line can be removed. Ava has tolerated the increased tube feeds well for the most part, but still periodically throws up.
Ava still returns to the hospital for periodic checkups, and Terri continues to be Ava's home health-care provider. Terri says the next time they go to the hospital, they will ask the surgeon to draw a map of Ava's insides, where her small intestines lay on one side of her belly, the large on the other and her other organs have been placed where they will fit.
"This has all made us appreciate life so more," Terri said. "What are we gonna do next year? We don't know. We just enjoy our girls."
The family tries not to think too far into the future, which for Ava is uncertain at best.
"I'm not sure you're ever out of the woods with a kid like this," Terri said. "Any time you have major abdominal surgery, scar tissue grows and it can restrict" the intestines or other organs, causing problems.
But Terri and Brian know there is a reason Ava is here and why she has fought so hard to live.
"She doesn't let anything stop her," Terri said. And that means, the Helmick house is now getting back to normal.
Upstairs on Friday morning, Ava played, her giggles echoing to downstairs. She had carried a large-eyed stuffed animal under her arm as she climbed the stairs.
Terri says Ava likes to play doctor, putting the blood pressure cuff on people's arms and placing the stethoscope just above the elbow. She loves to play "Guitar Hero," but gets frustrated when the video game boos her performance. And her face lights up when she gets to go outside and take wagon rides on the sidewalk in front of her house.
"She loves life," Terri said, and that makes every minute worth it.
March is CDH Awareness Month
Each year, 1,800 babies are born in the United States with congenital diaphragmatic hernia, a condition where the muscle between the rib cage does not form and a baby's organs move into his or her chest.
The condition occurs in one out of every 2,000 live births and often is fatal, according to chop.edu.
Of those who do survive, 60 percent reherniate, said Terri Helmick, and it is unknown how many other problems children with the condition will face throughout their lives.
However, Helmick and others are doing their best to raise awareness about the condition, and research continues to be done for ways to eliminate the problem. March is CDH Awareness Month.
To help share the story of CDH, Helmick has started two blogs for her daughter Ava, born with the condition Aug. 31, 2006. They Web sites are http:/avaslifewithcdh.blogspot.com and http://cdhawarenessvideos.blogspot.com.
Helmick also has started a new blog called, "Full of Miracles," at http://allmiracles.blogspot.com. It is meant to spread hope and to highlight all types of miracles.
The blogs have drawn a lot of viewers and support for the Helmicks, who hope to share that support with others in need of it.
-- The Hawk Eye
Thanks again Shawna, you did a wonderful job!