Jen and Mike Davis - a journey through fear and faith

Jen and Mike Davis celebrated the birth of their second child, Cutler, on July 8 of this year. Cutler had lots of brown hair, got to bond with his parents that first day, meet his big sister Riley, and seemed perfect and healthy. But the next morning brought a dramatic and terrifying change.

Cutler’s day nurse had worked previously in a cardiology clinic. “She said she thought she heard a murmur,” Jen said. “She took Cutler off to be tested, and then she came back without him.” The news wasn’t good. Cutler was diagnosed with a congenital heart defect, moved to the neonatal intensive care unit and given medication to keep his heart beating.

Cutler Davis after diagnosis

Thus began a journey that would take Jen and Mike through worry and fear, the necessity of learning all kinds of medical terms, and what faith means when faced with the possibility of losing a child.

For Cutler, the prayers began immediately following the news that his life was in danger. At barely 24 hours old, he was taken by ambulance to Children’s Mercy Hospital. Since this turn of events was completely unexpected, Jen had yet to be discharged after giving birth, so had to remain behind for a short while.

When you are told that your baby has something wrong, something life-threatening, emotions can wash over you in waves. Shock, fear, and a desperate attempt to make everything right. For Jen and Mike, that attempt came in having Jen’s mom contact Pastor Mike and ask him to baptize Cutler. Interestingly, Pastor Mike and Cutler share the same birthday. Pastor Mike had just finished a game of golf when he got the call, so he went home, cleaned up and headed to the hospital.

Pastor Mike said the family gathered in the hallway for prayer, then went to Cutler’s crib for the baptism. “The cool thing about Cutler’s baptism,” Pastor Mike said, “is that the hospital brought me a bottle of sterile water to use.” That is an illustration of how, as he explained, God uses everyday stuff in ways that connect us to him. “It’s tangible evidence of God’s presence in things we can’t understand,” he said. “In this situation, baptism is where we see the promise that God will never forsake us.”

Cutler's baptism

For a terrified parent, such a baptism is also an illustration of how our faith moves us to cling to God, completely helpless, yet trusting that he is there for us when we need him the most. Cutler was 36 hours old at the time of his baptism. That was a Wednesday.

Then something good happened. “On Friday, we were told that Cutler’s heart problems went from being severe to mild in function,” Jen said. Specifically, that means both his left and right ventricles improved in function, and the aorta wasn’t as small as the doctors had thought. Jen noted in her blog that the doctors were surprised at Cutler’s improvement in less than 24 hours.

The doctors laid out a plan, with Cutler’s first surgery scheduled sometime within the next couple of weeks. But that plan changed pretty quickly, and all of a sudden, Cutler was scheduled for surgery on July 15, one week after his birth. Up to this time, Jen and Mike hadn’t held their baby since the day of his birth. They could touch him briefly, and had gotten to have him lie on a pillow on their lap, but skin-to-skin contact was restricted. The surgery went well, and basically gave Cutler time to grow a little bit more before he faces possible open heart surgery in the future. And finally, Jen and Mike were able to hold Cutler for the first time in nine days.

Cutler remained in the pediatric intensive care unit following his surgery. His health continued to improve, though in fits and starts and with occasional setbacks. He had trouble taking a bottle, holding food down, so the feeding tube remained in place. His breathing was erratic. On July 23, he was moved to the cardiology floor, which was, as Jen described, a little more ‘home-like.’ Then his sodium levels dropped, though he was finally up to taking about an ounce a day of food by bottle. He finally began to gain a little bit of weight, and was taken off most of his medications.

As Cutler continued to improve, Jen and Mike dared to dream he would be coming home soon. But then another problem occurred, this one with the stent that was placed in Cutler during his first surgery, to keep his patent ductus arteriosus (PDA) open. The PDA is a normal fetal blood vessel that closes soon after birth. With Cutler, that didn’t happen, therefore the stent. But now, as the PDA was starting to close, it was restricting the stent. Cutler, usually good-natured in spite of everything, became fussy, agitated and unable to eat. By now, the stent was determined to be too short, and the PDA tissue was causing some blood flow blockage. So in a second surgery, the doctors were able to extend the stent and allow the blood to flow back through the heart valve.  

The Davis family

Then came August 14. Cutler had been in the hospital for 37 days. He had been poked and prodded, had blood transfusions and shots, been surrounded by medical equipment and personnel. His parents had lived in a surreal world throughout this time. Mike, who is in restaurant management, said that his employees weren’t sure what to do or say around him. But August 14, a whole new experience began for all of them, because this was the day that Cutler finally came home, that Jen slept in her own bed, that she and Mike could be parents in the normalcy of their own house.

Cutler’s health still isn’t certain. He likely faces open heart surgery, but a December 12 visit will help determine more about that. What is certain, though, is that Cutler is a miracle baby. From the nurse who had the experience to notice his heart murmur, to the hundreds of people who joined voices in prayer, from the baptism which seemingly brought unexplained improved heart function, to the surprising improvements in the way his ventricles functioned.

Cutler - happy at home

As Jen and Mike recently shared this story, the experiences they’ve been through were readily apparent in voices choked with emotion, in the tears that kept welling up as they recalled events. “You sit back and prioritize,” Jen said. “My prayer was that God would be there for him, just watch over him.”

Jen has written about Cutler’s journey in a blog on the CaringBridge site. In one posting, she noted that she had always called Cutler her little Superman. She wrote, “I will leave you with a quote my cousin found for him today... "So many of our dreams seem impossible, then they seem improbable, and then when we summon the will; they soon become inevitable." - Christopher Reeve

If you would like to read more about Cutler’s story, visit this link: 

http://www.caringbridge.org/visit/cutlersjourney/journal/view/id/53cb4267a589b4ef61aea49c.

Chris Chaney - an altered mind

The suspicion that something is wrong physically or mentally can manifest itself in a variety of ways. Perhaps it’s feeling an unexplained ache or pain, or finding a lump under the skin, or sudden bouts of crying. For Chris Chaney, it happened while he was driving.

Chris Chaney, several years before symptoms began

 Chris had just dropped his grandson off at preschool, and was returning home. “It was like someone had pulled a black curtain down over me,” Chris said. “I pulled over, and then it went away and I was able to drive again.”

In Chris’s memory, he told his wife, Janet, about it, and they went to the doctor, then a specialist.

For Janet, the suspicion that something was wrong was more subtle, and came about gradually. She said that about five years ago, she started noticing little things. “We would watch the same television show, and it was like we had each seen a different show,” Janet said. She also noticed lapses in Chris’s memory.

There is no way to qualify when Chris felt the black curtain cover his mind and his vision, or why in his memory he told Janet about it and then went to the doctor. The only certainty is that this is how Chris perceives the beginning of knowing something was wrong. But what actually prompted a visit to the doctor, Janet said, is when Chris, who was always great with directions, couldn’t remember how to get to Janet’s sister’s house. That’s when Janet knew something was indeed wrong and that Chris needed to be checked out.

That first doctor visit led to visits with specialists, which led to series of testing. Finally, two years after Janet first noticed Chris’s memory problems, he and Janet received the diagnosis: Early stage Alzheimer’s. Chris was 61.

 “I was flabbergasted,” Chris said. “I had no idea this was happening. I was scared.” Janet was scared too, but not necessarily surprised, because, as she said, by that time they were both sure that something was wrong.

Available information about Alzheimer’s isn’t cheerful to read. There is a seven-stage framework that generalizes what to expect, starting with a mild cognitive decline and ending with severe decline that causes abnormal reflexes, rigid muscles, impaired swallowing, and eventually death. On average, people with Alzheimer's disease live eight to 10 years following diagnosis, though some survive as long as 25 years.

“I was really mad,” Chris said about the prognosis. “I thought I had some good years left in me.”

Chris spent some time living with that anger, trying to process what was going to happen to him, how it would change daily life as he knew it, how it would affect those he loved. “Then I realized the anger wasn’t going to help,” he said. “I went back to being a kid, praying every day. Once I got over being mad, all kinds of people stepped forward to help.”

That help came in the form of rides, prayers, shared meals together. Chris also joined a group through the Alzheimer’s Association that meets twice a week and offers not only support but games and exercises designed to stimulate cognitive function. “We call ourselves the Crazies,” Chris said. “They’re people like me who can still get around and do things. We’re all in the same boat.” Chris said the support group has helped him a lot, especially by just being able to talk to people who are now his peers in ways they can all relate with.

Though Chris does still drive, he has found that he becomes disoriented on cloudy or rainy days. He said he can’t seem to get his bearings at those times. Therefore, in winter he becomes more reclusive. Soon, he won’t be able to attend the men’s group at Holy Cross on Thursday mornings unless someone offers to bring him.

Chris Chaney in 1994

He tries to keep himself physically fit, exercising regularly while listening to music. This man, who worked in a position of management, who earned a doctorate when he was in his mid-20s, who is a charter member and past council president of Holy Cross, now takes medication every day, hoping to slow the inevitable progression of this life-altering and devastating disease. And when he gets upset and angry, he said, he considers all those who are less fortunate than him, especially children who have suffered. That helps him put his own life into perspective.

He credits his wife, Janet, for being a rock of support. “She has a good backbone,” Chris said. “She’s tough, always practical.” Janet said she continues to work full-time, which gives her an outlet, and she tries to keep Chris engaged in daily activities.

“It’s important to keep his spirits up,” she said. “With everything else going on, getting depressed doesn’t help.”

For Chris, there isn’t much he can do but keep on living each day as it dawns, and staying as positive as he can. “There’s no cure,” he said. “That’s the one thing that really bothered me. I know that it will slowly progress.” 

There is hope on the horizon for people who suffer from Alzheimer’s. The 2014 Nobel Prize in Physiology or Medicine was awarded on October 6 to a trio who discovered cells in the hippocampus and entorhinal cortex that constitute a positioning system in the brain. These cortexes are frequently affected in the early stages of Alzheimer’s, causing individuals to lose their way and be unable to recognize their environment. This type of research may help lead to better understanding and perhaps even a cure some day for Alzheimer’s.

What they discovered might help explain something Janet has noticed with Chris. She said that, for example, she was trying to point out a weed to Chris, but he couldn’t see it. She said they had his vision tested, but his eyesight seemed okay, so it was a mystery why he couldn’t see visible things at times. The explanation might be that it’s not a vision problem, but rather how he now interprets his environment, since the mapping position in his brain has gone awry.

Chris and Janet Chaney today

Chris and Janet have two grown sons and a daughter, and three grandchildren. Family helps keep them grounded. They are also appreciative of how much friendship helps, such as people offering to have dinner with them, or coming over to spend a few hours with Chris at home, or offering to give him rides. Living in the moment is the best medicine for them, rather than focusing on the future. Chris and Janet decided to share their story because it might help someone else in some way, perhaps provide some insight or some hope.

“I don’t know why,” Chris said, “but I still feel God’s presence.” That is apparent within moments of meeting Chris, the wit and sparkle that comes from a presence deep within. God is surely with this family.