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EVERETT, Wash. (AP) — When it came time for Ashley and Isaiah Kombol to bury their infant daughter, they found a place in their grief to think of others with four simple words: In lieu of flowers.
Emily-Mae Kombol, born seven weeks prematurely July 21, weighed just 2 pounds, 11.9 ounces. She easily fit in the palm of her grandmother's hand.
She was tethered to breathing tubes and monitoring devices in the infant intensive care unit at Providence Regional Medical Center Everett for nearly all the six short weeks of life.
Her parents would often remain with their daughter until late into the evening, said Sundie Kombol, Isaiah's mother. The one thing that relaxed both Emily-Mae and her parents was a night-light the couple received as a baby shower gift. It played lullabies and projected images of animals and ocean scenes on the ceiling.
At night if Emily-Mae was fussy, "hearing the music and seeing the light made it a lot easier for her," Ashley Kombol said.
Emily-Mae's battle for life involved more than just being born at 32 weeks into the pregnancy. In fact, initially she seemed to be thriving. "She gained a little more than a pound in four to five days," her mom said.
But staff at Providence Regional Medical Center Everett's infant intensive care unit noticed Emily-Mae was having problems breathing when she was about five weeks old. They put her on oxygen and arranged for a consultation at Seattle Children's Hospital on Aug. 25. "She was growing so quickly that her body couldn't keep up," Ashley Kombol said.
Specialists at the Seattle hospital diagnosed Emily-Mae with a rare disorder that worsens over time — pulmonary vein stenosis, a narrowing of the veins carrying blood from the lungs to the heart.
A doctor outlined the only option available, a series of surgeries. The first might prolong her life for at most two to three months.
Originally, Ashley and other family members discussed going ahead with the surgery, hoping for a miracle that would allow her to pull through, Isaiah Kombol said. "Then we started looking at the reality. The first surgery, how successful would that be? The doctors said she probably wouldn't make it. If she did, she would be hooked up to tubes for the duration."
Ashley's mom, Dana Stoffel, asked the doctor what he would do. "I'll give you an honest answer: I wouldn't do it for my own kid," Isaiah remembers him saying.
Ashley, Isaiah and other family who had joined them at Children's were left to decide what to do. "My dad really struggled with it," Ashley said. "He just didn't want to give up."
Isaiah Kombol works as a social worker. "I give talks every day about hospice and end-of-life issues," he said. Even so, "I didn't want to hear it from other people that this was happening to my daughter."
Ashley Kombol said the more she held and looked at her daughter, her thinking began to change. "I said I can't put my child through this," she said. "As a mother, you want to do everything you can to make them better. Holding her, looking at her crying, I said I won't have my child suffer just to have a little more time with her."
Ashley and Isaiah decided that Emily-Mae should go back to Providence, where she was closer to home. They decided to simply provide the most love they could for their daughter, rather than going ahead with any complex and risky medical procedures.
Ashley spent up to nine hours a day at the infant intensive care unit with Emily-Mae while her husband was at work. Over time, she developed a deep friendship with two members of the staff. Isaiah remembers the nurses coming to check on Emily-Mae in the evening, holding her, rocking her, kissing her. "That made it very comfortable when my wife and I weren't able to stay up there, to know she was in good hands," he said.
During the days she spent with her daughter in the neonatal intensive care unit, Ashley would often look out the hospital windows and glimpse a celebratory ritual. Babies cared for in the intensive care unit and preparing to leave for home would be taken out of the hospital in a red wagon outfitted with a car seat.
One day, nurse Nancy Godin heard Ashley comment that Emily-Mae wouldn't get to ride in her own red wagon. A fellow employee said: "We've got to get the baby outside."
On Sept. 7, just after noon, Emily-Mae was fitted into a red wagon with an oxygen tank. She was surrounded by her parents and family members. "She got to see the outside world for about a half hour," Isaiah's mom said. They took some family pictures. Emily-Mae died about eight hours later.
Godin, who had worked a 12-hour shift, went home, changed clothes, and "came back to be with us and stayed with us about an hour after she passed," Ashley Kombol said.
Ashley, 32 and Isaiah, 33, had celebrated their second wedding anniversary in June. It was their first pregnancy but it wasn't the couple's first loss of a child. They learned of Ashley's pregnancy Jan. 7. Initially, they were told they were having twins. But one of the twins died just 19 weeks into the pregnancy.
In the last days of Emily-Mae's life, Sundie Kombol remembers Ashley commenting that they didn't want flowers when her baby died, but instead would ask people to make donations for gifts to the neonatal unit.
About $1,500 was raised. It was enough to fill a room in their Everett home with gifts, including 27 image-projecting night-lights, 10 mobiles, 66 receiving blankets and 24 footie pajamas, specially sized for premature babies.
Emily-Mae is buried in a cemetery next to Silvana's historic Little White Church on the Hill, built in the 1890s. Pastor Arden Barden of Peace Lutheran Church baptized her at the hospital Aug. 27.
The Kombols "dealt with this whole thing from beginning to end with great dignity and faithfulness," he said. "They are people of faith. They saw an opportunity that what blessed their child could also bless others."
Godin had fostered an unusually caring relationship with the couple during her temporary assignment at the Everett hospital. Her last day at the neonatal unit was Nov. 17. She is moving to Tampa, Florida.
She met them the evening earlier this month when they returned to the hospital to deliver the gifts to the neonatal unit. A family photo shows Godin smiling and linking arms with Ashley.
The Kombols "invited me into their lives at a very difficult time for any couple," Godin said. "I feel very blessed to have been a part of that. I've made life-long friends. We'll always be in touch. They've become my Everett family."
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Information from: The Daily Herald, http://www.heraldnet.com
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