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ENLARGE
As parents Nora and Curtis Schultz play with two of their children, Marisa, 2, asks if she has an ‘owie’ in her stomach like her sister Alysa, nearly 3 months old. Alysa was born with a heart condition and had surgery when she was three days old. She is expected to have more surgeries to correct her heart problems. The yellow line is a feeding tube that goes to Alysa's stomach.
How to help
Contributions to the Schultz family can be made at any U.S. Bank.
Checks should be made payable to Curtis Schultz. Contributions will help offset costs for Alysa Schultz’s doctors’ visits as well as transportation expenses to and from Eugene and Portland for appointments.
Checks should be made payable to Curtis Schultz. Contributions will help offset costs for Alysa Schultz’s doctors’ visits as well as transportation expenses to and from Eugene and Portland for appointments.
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ENLARGE
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A diagram of Alsya's heart after surgery to repair some of the problems associated with Fallout's tetralogy, left, is next to a diagram of her heart at birth.
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WINSTON — One look at Nora and Curtis Schultz’s baby girl, and you would never know something’s wrong.
The evidence is underneath her shirt, where one can see small scars and tubes.
Alysa Beth Schultz was born April 24 with Fallot’s tetraology, a congenital heart defect producing cyanosis, and DiGeorge syndrome, a chromosome disorder.
It was just hours after Nora of Winston gave birth to Alysa that the baby’s pediatrician detected something was wrong. When Alysa coughed, she would turn blue, Nora said, and Dr. Jackie Groshong at Mercy Medical Center heard a small murmur from Alysa’s chest.
Groshong immediately ordered an echocardiogram to test the newborn. Alysa was flown to Doernbecher Children’s Hospital at Oregon Health & Science University in Portland, where she stayed for 5 1/2 weeks.
Two doctors from Doernbecher’s transport team came on a flight to Roseburg to pick up Alysa, who was accompanied on the flight by her father, along with his mother, Carol Schultz, and sister, Brenda Estrada, both of Roseburg.
Nora had to remain at Mercy Medical Center to recover from her Caesarean section and traveled to Portland three days after giving birth.
“After having a C-section, that’s a long ride. I was hugging a pillow the whole time,” Nora said.
It was the day after she arrived that Alysa had heart surgery.
It was then that 31-year-old Nora and 33-year-old Curtis learned that their newborn had Fallot’s tetraology, meaning there are four heart problems, and DiGeorge syndrome, which can affect speech, sight, learning and growth.
“We’re still learning about everything she has,” Nora said. “She was very, very fortunate because (with) some babies, they wouldn’t have caught it in time.”
Typically, those with DiGeorge have difficulty swallowing correctly, she said. To aid Alysa’s feeding, she first used a feeding pump called the Bard. With the Bard, she had to be fed every three hours. It took a little more than an hour to set up and to go through the feeding process.
Nora said her daughter was spoiled by nurses during her stay at the hospital. They gave her a CD crib player and got her hooked on Beethoven and Mozart, said Alysa’s grandmother, Joan Sewall of Roseburg.
“She likes long-haired music now,” she said.
She added that Alysa needed the attention.
“Most of the time when you hold her, she wants you to hold both of her hands. She likes to snuggle.”
While Alysa was in the hospital, her older brother Brayden, 7, brought her a gift — a Precious angel that says a prayer when its hand is held.
“She would go to sleep after she heard it,” Curtis said.
Alysa also has an older sister — Marisa, 2.
Nora and Curtis met at the Douglas County Fairgrounds, where Nora worked at the concession stands and Curtis was a race car driver. The two were introduced in the summer of 1990.
“One of my friends was going out with one of his friends, and they kind of set it up,” Nora said.
That was in 1990, and the two were married two years later.
They moved to Winston when she was pregnant with Brayden in 1998. She had Marisa five years later.
“They are so good with (Alysa),” Nora said of her older children. “They know that she’s special.”
The evidence is underneath her shirt, where one can see small scars and tubes.
Alysa Beth Schultz was born April 24 with Fallot’s tetraology, a congenital heart defect producing cyanosis, and DiGeorge syndrome, a chromosome disorder.
It was just hours after Nora of Winston gave birth to Alysa that the baby’s pediatrician detected something was wrong. When Alysa coughed, she would turn blue, Nora said, and Dr. Jackie Groshong at Mercy Medical Center heard a small murmur from Alysa’s chest.
Groshong immediately ordered an echocardiogram to test the newborn. Alysa was flown to Doernbecher Children’s Hospital at Oregon Health & Science University in Portland, where she stayed for 5 1/2 weeks.
Two doctors from Doernbecher’s transport team came on a flight to Roseburg to pick up Alysa, who was accompanied on the flight by her father, along with his mother, Carol Schultz, and sister, Brenda Estrada, both of Roseburg.
Nora had to remain at Mercy Medical Center to recover from her Caesarean section and traveled to Portland three days after giving birth.
“After having a C-section, that’s a long ride. I was hugging a pillow the whole time,” Nora said.
It was the day after she arrived that Alysa had heart surgery.
It was then that 31-year-old Nora and 33-year-old Curtis learned that their newborn had Fallot’s tetraology, meaning there are four heart problems, and DiGeorge syndrome, which can affect speech, sight, learning and growth.
“We’re still learning about everything she has,” Nora said. “She was very, very fortunate because (with) some babies, they wouldn’t have caught it in time.”
Typically, those with DiGeorge have difficulty swallowing correctly, she said. To aid Alysa’s feeding, she first used a feeding pump called the Bard. With the Bard, she had to be fed every three hours. It took a little more than an hour to set up and to go through the feeding process.
Nora said her daughter was spoiled by nurses during her stay at the hospital. They gave her a CD crib player and got her hooked on Beethoven and Mozart, said Alysa’s grandmother, Joan Sewall of Roseburg.
“She likes long-haired music now,” she said.
She added that Alysa needed the attention.
“Most of the time when you hold her, she wants you to hold both of her hands. She likes to snuggle.”
While Alysa was in the hospital, her older brother Brayden, 7, brought her a gift — a Precious angel that says a prayer when its hand is held.
“She would go to sleep after she heard it,” Curtis said.
Alysa also has an older sister — Marisa, 2.
Nora and Curtis met at the Douglas County Fairgrounds, where Nora worked at the concession stands and Curtis was a race car driver. The two were introduced in the summer of 1990.
“One of my friends was going out with one of his friends, and they kind of set it up,” Nora said.
That was in 1990, and the two were married two years later.
They moved to Winston when she was pregnant with Brayden in 1998. She had Marisa five years later.
“They are so good with (Alysa),” Nora said of her older children. “They know that she’s special.”
Nurses at Doernbecher practiced Alysa’s skills by playing with a mobile to see if she’d follow it.
At one point during the activity, her father entered the room.
“She spotted (her dad) and followed him all across the room,” Alysa’s grandmother said. “She’s a daddy’s girl.”
After 5 1/2 weeks of conducting tests and monitoring her progress, Alysa was headed for home.
“It was scary and wonderful at the same time,” Nora said. “(My mom) called the whole nation.”
After her surgery at the hospital, Alysa had a small infection at the bottom of her incision. She had to have an open-wound surgery to clean it out, and then Alysa had to receive antibiotics to help heal the wound.
Upon bringing Alysa home, the Schultz’s had to administer a PIC line through Alysa’s arm to give her the antibiotics, which flowed directly to the heart. That had to be done every eight hours for three weeks.
“That was the scariest one,” Nora said. “Instead of giving her a regular IV, they went straight to her heart to clean it up faster.”
Since Alysa left the hospital, she’s been fed a special formula called Pregestimil. They’re now using a Kangaroo Pump, which drips and takes food directly to the stomach.
Alysa still has to be fed every three hours. She’s fed with a bottle during the day and uses the Kangaroo Pump at night. It drips all night, so Nora and Curtis aren’t getting up anymore at night to do the feedings.
“It made for some really, really long nights,” Nora said.
Curtis added, “Mostly during the weekend I did as much as I could because I didn’t have to work. We got a lot of family support too — moms, sisters.”
He noted that they received help from his co-workers at Roseburg Forest Products in Dillard and others who made monetary donations to help offset expenses. He’s a journeyman carpenter at Roseburg Forest Products, where he’s worked since 1992 .
The Schultz family recently returned from Portland where physicians conducted a lung scan on Alysa.
“When we went there, they couldn’t get over how well she was eating,” Nora said.
“She takes the whole feeding — there’s nothing stopping her.”
Her lung scan was a little low at 29 percent, she said, as 44 percent is considered “normal” for her age.
“She’s got a narrower opening, so they’re gonna go into the stent to open it.
Basically, she has one lung that’s doing all work.”
She said, though, that doctors are hopeful and that this is normal for her condition.
As for Alysa’s future, Nora said they won’t know for sure until she hits her milestones.
She’ll have heart surgery again at age 2 or 3 and again in her teenage years.
“She’s a fighter,” Nora said.
Curtis added, “People ask how we’ve gotten through it. You just step up to it ... it’s just the way you’re made.”
• You can reach Jennifer Mathis at 957-4208 or jmathis@newsreview.info.
At one point during the activity, her father entered the room.
“She spotted (her dad) and followed him all across the room,” Alysa’s grandmother said. “She’s a daddy’s girl.”
After 5 1/2 weeks of conducting tests and monitoring her progress, Alysa was headed for home.
“It was scary and wonderful at the same time,” Nora said. “(My mom) called the whole nation.”
After her surgery at the hospital, Alysa had a small infection at the bottom of her incision. She had to have an open-wound surgery to clean it out, and then Alysa had to receive antibiotics to help heal the wound.
Upon bringing Alysa home, the Schultz’s had to administer a PIC line through Alysa’s arm to give her the antibiotics, which flowed directly to the heart. That had to be done every eight hours for three weeks.
“That was the scariest one,” Nora said. “Instead of giving her a regular IV, they went straight to her heart to clean it up faster.”
Since Alysa left the hospital, she’s been fed a special formula called Pregestimil. They’re now using a Kangaroo Pump, which drips and takes food directly to the stomach.
Alysa still has to be fed every three hours. She’s fed with a bottle during the day and uses the Kangaroo Pump at night. It drips all night, so Nora and Curtis aren’t getting up anymore at night to do the feedings.
“It made for some really, really long nights,” Nora said.
Curtis added, “Mostly during the weekend I did as much as I could because I didn’t have to work. We got a lot of family support too — moms, sisters.”
He noted that they received help from his co-workers at Roseburg Forest Products in Dillard and others who made monetary donations to help offset expenses. He’s a journeyman carpenter at Roseburg Forest Products, where he’s worked since 1992 .
The Schultz family recently returned from Portland where physicians conducted a lung scan on Alysa.
“When we went there, they couldn’t get over how well she was eating,” Nora said.
“She takes the whole feeding — there’s nothing stopping her.”
Her lung scan was a little low at 29 percent, she said, as 44 percent is considered “normal” for her age.
“She’s got a narrower opening, so they’re gonna go into the stent to open it.
Basically, she has one lung that’s doing all work.”
She said, though, that doctors are hopeful and that this is normal for her condition.
As for Alysa’s future, Nora said they won’t know for sure until she hits her milestones.
She’ll have heart surgery again at age 2 or 3 and again in her teenage years.
“She’s a fighter,” Nora said.
Curtis added, “People ask how we’ve gotten through it. You just step up to it ... it’s just the way you’re made.”
• You can reach Jennifer Mathis at 957-4208 or jmathis@newsreview.info.
