WINNEMUCCA - Evelyn Grace Huebner will be celebrating her first birthday on Thanksgiving. It's been a tough first year for the precious little girl, with hardships no person - let alone a baby - should have to endure. But endure she has, and her parents Tom and Edwina are grateful for her fighting spirit.
Evie was born Nov. 24, 2010 around 1 a.m. at Humboldt General Hospital. Not long after her birth, through routine exams, her doctor discovered a heart murmur. Further testing revealed a congenital heart defect called tracus arteriosus, a rare but serious condition in which a single blood vessel comes out of the right and left ventricles, instead of the normal two (pulmonary artery and aorta). There is usually also a large hole between the two ventricles and as a result, the blue (without oxygen) and red (oxygen-rich) blood mix.
Evie and her mother were life flighted from HGH to Primary Children's Medical Center in Salt Lake City within 12 hours after Evie's birth - she would have to undergo surgery to correct the defect.
First, doctors wanted her to gain a little weight since she was born weighing little more than five pounds, according to Edwina. The surgery was scheduled for Dec. 9, 2010.
On Dec. 5, Evie experienced a cardiac arrest due to complications of the defect. Her team of doctors was able to stabilize her and she underwent surgery four days later as scheduled.
About a month later it was determined by her doctors that Evie would have to have a second surgery since she wasn't progressing as they'd hoped. Edwina said Evie was having severe arrhythmia (irregular heart beat) and was showing other signs of heart failure. Doctors wanted to fix the "leafs" of her heart valves - typically a human heart valve has three leaflets; Evie had five to six. The leaflets flap and seal to direct blood flow; malformed leaflets can lead to "regurgitated" blood back into the heart, insufficient flow and pressure problems.
Her second surgery was on Tuesday, Jan. 11, 2011. When they opened her up, Edwina said doctors found an enlarged heart, which can happen when it's working too hard.
"Her heart was the size of a six-year-old child's," Edwina said.
Her second surgery went well and she received more donor tissue to help with repairs. While Evie took her baby steps to recovery, doctors began the lengthy process of weaning her off the ventilator, which she'd had in since before her first surgery. They removed it Jan. 30 but was back on it within a couple days following complications.
The next several months were spent in the hospital where Evie kept her team of doctors on their toes with her medical maladies. And although her heart condition was the original complication, the Huebner family found themselves worried about her respiratory system in the months following her surgery. In all, Evie spent the first nearly 10 months of her life in the hospital. Tom and Edwina were able to bring her home at the beginning of September, and although they are grateful to have her home, the last couple of months have been anything but relaxing. They are in a constant state of vigilance; Evie is on a feeding tube and has a tracheotomy to allow her to breathe. She is on a ventilator and has to be "bagged" sometimes when she is not getting enough oxygen through the ventilator.
"She's home, basically on life support," said Edwina. "We've been on a rollercoaster since she was born."
The Huebners are also having issues with getting and maintaining the medical supplies they need. Local home health care facilities aren't able to supply the family with ventilators - a life-giving support system necessary to Evie's survival. Edwina said it's been a very frustrating process, but they were finally able to obtain two ventilators through their insurance company. But since there aren't any local agencies with personnel who can help, if an emergency occurs and there is a problem with the machine, the Huebners have to coordinate with people in Salt Lake, 350 miles away.
The Huebners, though not originally from Winnemucca, have found support within the community.
"Everyone's been really good to us," she said.
Some of that support is coming soon in the form of men and women on motorcycles. The Toys for Kids Poker Run and Silent Auction, an annual event sponsored by The Wild Bunch, Koyote Kruisers and the Northern Nevada Racing Association, is set for Dec. 10 from 10 a.m. - 2 p.m. All monetary proceeds will go to support Evie and her parents; food and toy donations will go to local charities. For more details, see the banner ad below or call Bill at (775) 304-4707.
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