By Rachel Cavanaugh
Editor, The Sentinel
On Valentine's Day one year ago, Devon Jenkins surprised her husband with a special gift: a pregnancy test.
She knew the results but wanted to see his expression when he opened up what he thought were golfing certificates. As the father-to-be inspected the proverbial red stripe indicating 'positive', he said it was "like a dream come true."
"As soon as he opened it he said, "Are you kidding me?! Are you serious?!" recalled Devon. "We just hugged and cried a little because we were so excited. We were so happy to know we were going to have a baby."
It was to be their first child, due in October. They began planning at once.
Devon had been born and raised in Goldendale and the couple was now living in Yakima. Throughout the course of the pregnancy, everything appeared normal. At one point, an ultrasound technician said she couldn't "get a good view" of the heart, but there was nothing alarming. Although the poor ultrasound view happened again in Yakima, a team at the Seattle Children's Hospital maintained she had a healthy baby.
"They said her heart looked fine and ruled out any abnormalities," Devon said.
Nine months later, on October 20, with the baby a week overdue, doctors induced labor.
According to Devon, the plan was to check in during the evening and give birth around morning time.
However, within ten minutes of connecting to a heart monitor, doctors ordered an emergency Caesarean section. Something was wrong.
"All that was going through my mind was, 'someone please tell me she will be okay and that she is going to survive,'" remembered Devon.
"However, no one told me that."
A neonatologist said her baby, who she and her husband Ryan named Karlee Ann, was near brain dead and might not live. She was taken immediately by Life Flight to Seattle.
There, it became clear she had ventricular problems. However, some experts thought time and medication might heal them. She was released a few weeks later with special instructions.
In the coming months, Karlee was in and out of the hospital. On Thanksgiving, she was rushed in with a blood infection and just after the holidays, things worsened.
"New Years' morning she began throwing up all her food," Devon wrote in an online journal. "She was moaning and groaning and miserable. Her breathing was very rapid and we knew she was getting dehydrated fast. When we got to the emergency room [and] told them what was going on, they sent us home.
"However, by 2 a.m. she was worse than ever... she was completely dehydrated and starting to turn blueish around her mouth."
When they put in a catheter, Karlee stopped breathing and went into cardiac arrest, Devon said. They did CPR to bring her back and she got a Life Flight back to Seattle.
Karlee has remained there ever since.
Doctors have diagnosed the three-month-old with a rare condition called Left Ventricular Non-compaction Disorder, also know as spongiform cardiomyopathy, or "spongy heart."
Rather than developing into a firm mass in the womb, the condition causes the heart to stay sponge-like, as in earlier stages of development.
Some studies suggest the condition is as rare as 0.12 cases in 100,000. However, most agree it is new enough that its prevalence in not fully understood.
In fact, many things about the disorder, which was only named in 2006, are not known.
What is certain, however, is that Karlee will stay in the intensive care unit (ICU) on a ventilator until she receives a heart transplant.
"Karlee needs a heart as soon as possible," said Devon. "She is on a very fine line at this time and the doctors are trying a bit of everything to help her out.
When asked how imminent it is, Devon said that is unknown.
"I have learned that the doctors here do not give timeframes and they do not talk about the future much. They most certainly talk about the here and now."
Until the heart comes, Devon is staying in Seattle around the clock. Ryan works a 40-hour week in Yakima and comes up on weekends.
Although she is often encouraged to do so, it is rare the mother leaves the hospital.
"I don't like Karlee to be alone much because when she does wake up I like for her to hear familiar voices," she said.
Even with the circumstances, she said, her daughter has begun developing a personality of her own.
"She has bright blue eyes and without her tube she smiled all the time," Devon said. "She is very easygoing and is curious about everything. She studies people when they are near her and she communicates with her eyebrows and feet. I can tell when she is happy, uncomfortable, sad, mad and sleepy.
"Of course since she is intubated we can't hear her cry or see her mouth, but I have a clear picture of when we brought her home and...how her beautiful face looked."
In the beginning, Devon said she and Ryan struggled with the idea what must happen for Karlee to get a heart. Unlike with an adult, where organs can vary in age, Karlee must get her heart from another infant.
"At first it was very hard for us," said Devon. "I would sit and feel guilty for praying."
Yet she said speaking to her pastor helped her see things in a different light. Rather than hoping for a tragedy, she said, she looks at it as asking that when one occurs, the parents will have the strength to donate.
She added that if she were on the other side of the fence, she would want to give life to another family.
Humor, the mother said, is what gets them through each day. She often jokes that Karlee will be an only child and makes fun of herself, like when she paid a bill three times due to sleep deprivation.
"At times we lose it and cry and cry but that is normally followed with a lot of laughter," she said.
At the moment, Devon and Ryan have both run out of sick time at work and medical bills are mounting. A group of friends has put a fundraising project together called "Team Karlee." They have held several functions including a Bounty Texas Hold 'Em Poker Tournament and a hamburger dinner at the Goldendale High School.
The group has also set up an account for the Jenkins at Columbia River Bank and Key Bank.
Devon updates a website almost daily with news on Karlee, as well as pictures and a YouTube video. Guests can leave message comments and prayers at http://www.caringbridge.org/visit/karleeannjenkins.
Devon said it is her daughter's unique personality that brings her back around each day.
"If I could describe Karlee, I would say she is strong-willed, happy, pretty, loving and, most of all, a fighter," said Devon. "When I look at her I think to myself, 'how in the heck can I be as strong as her each and every day? Will she think I am weak if I cry at night, praying for strength to get through each day?'
"There are times I want to sit and cry or stay in bed, however there is a little girl waiting for me each morning... as long as she is fighting this battle, we better too."
Chandler introduces safety bill
Washington state representative Bruce Chandler, R-Granger, introduced three pieces of legislation last week addressing access to jobs and education as well as safe working environments.
House Bill 2032, introduced last Thursday, would create a community agricultural worker safety grant program.
"Increased training and education on the job are well worth the investment," Chandler said in a written statement. "This will help the agricultural industry develop current employees for professional advancement."
The bill awaits a hearing in the House Commerce and Labor Committee.
House Bill 1896, introduced Monday, would assist employers that have a need for seasonal or temporary workers to hire legal workers. It would also provide a preference for the local workforce.
"This legislation would help [employers] gain access to a legal workforce with state cooperation, and provide more opportunities for jobs," he said.
The bill awaits a hearing in the House Commerce and Labor Committee.
House Bill 1428 would establish the "field of dreams" program to provide college tuition through Guaranteed Education Tuition credits .
According to a spokesperson, there was no opposition against the House Bill 1428 in the House Higher Education Committee hearing.
Klickitat County gets federal funds for food and shelter aid programs
Federal emergency board awards close to $20,000 for voluntary agencies in region
Klickitat County has been awarded federal funding through the Emergency Food and Shelter National Board Program.
The county has been chosen to receive $19,396 to supplement food and shelter programs in the county.
The selection was made by a national board that is chaired by the Federal Emergency Management Agency and consists of representatives from the Salvation Army, American Red Cross, United Jewish Communities, Catholic Charities, USB, National Council of Churches of Christ in the USB and the United Way of America. The local board was charged to distribute funds appropriated by Congress to help expand the capacity of food and shelter programs in high-need areas around the country.
A local board will determine how the funds awarded to the county are to be distributed.
Public and private voluntary agencies interested in applying for the funds may contact (509) 493-3954
.
