Helping Christi

 in January of 2007 we went for the 20 week ultrasound at a small imaging clinic in Taylor, Arizona. We were excited and the tech was silent. Expecting it was standard operating procedure, we waited for the doctor's read of it. The phone rang a few days later inviting us to visit a specialist 3 hours away in the Phoenix Valley to investigate "abnormalities." When we made the trip, the specialist brought us in, hypothesized about a defect called "holoprosencephaly" with an incredibly high mortality rate and suggested abortion. We caught our breath, asked if Deana was at risk, and refused. He transferred our care.

The next doctor gave us one of only two prognoses that we have ever received for Christi. He told us that while in the womb she was in a safe place, but whatever was going on in that head of hers would be too much for her to survive more than a few minutes to a few hours after birth. That was all we could expect. 

Trusting that families are forever, we decided to loose no time building a relationship with our girl and began singing nightly to Deana's growing belly. "I am a Child of God" was the standard, and we hoped together for opportunities to lead guide and walk beside our sweet girl through whatever life held for her. 

March 29th was the scheduled C-section delivery. The pressure in her head had caused it to grow off the charts and she needed to come 2 months earlier than expected. We steeled ourselves, but were overjoyed to welcome our rather robust looking 4 lb 14 oz angel into the world. 

The doctors worked hard to stabilize her and then collect tests and samples to determine how they could best help. I followed - with a finger for her to hold and a familiar song on my lips. And when I sang it was powerfully clear - She knew me! She would quickly calm down and listen intently whatever was going on to hear our common plea that Heaven would lead us, guide us and help us find the way.

Within hours of birth they made a hole and inserted a tube into her head to relieve the pressure. 10 ounces and three days later, her now overlapping head plates created a curious spectacle. But she was here! she was ours! And she was beautiful!

The doctors determined now that she had suffered a stroke in utero killing some and disfiguring other parts of her brain. She had prenatal hydrocephalus and the fluid pressure in her head had literally been smashing her brain tissue against the inside of her skull. 8 days after her birth - on the 6th of April she had her first of many shunts placed to keep a regular fluid pressure in her head. The ensuing years included all sorts of new experiences and helps: head shaping helmets, feeding tubes, and seizure meds. Occupational, speech, and physical therapists came to our home became part of our routine. Milestones we had taken for granted and used to compare our children against others with our first two children became priceless and personal miracles. Talking was maybe the most normal milestone she reached around age two. She took her first steps at age 5. Before she began schooling, at 4, Christi's cognitive function testing revealed that she was significantly behind in all categories except one. She had the auditory memory of a 9 year old! She loved music and we felt so grateful for those early feelings to sing to her. 

Jospeh Smith taught: "All the minds and spirits that God ever sent into the world are susceptible of enlargement" (Teachings, 354). Parents naturally hold the primary responsibility to nurture that growth. With our first two children, that looked pretty standard, setting goals for milestones, school, sports, etc.. With Christi, sometimes it felt like all we could do just to keep her alive. Her growth and progress were punctuated dramatically with life threatening episodes from time to time. Shunts would fail, seizures wouldn't stop etc.. We joked with life flight teams occasionally about the frequent flyer miles that we must be accruing. 

There were great times of almost normalcy too, and we looked, hoped, and prayed for ways to help Christi's life be as wonderful and enriching as possible. Some of the answers to those prayers included the idea to enlarge the hole in a bottle nipple using a heated fork prong - to help her get off her feeding tube and learn a normal hunger response. And later, when she was 7 years old, the idea to bungee-cord her feet to the pedals of her bicycle to help her learn to discipline her muscles to the pattern for riding (watch her here). She was so determined and worked so hard! She inspired us with her drive and zest for life.

Then when she was 7 1/2 years old we had our closest call of all. After struggling to keep anything down for at least 12 hours, Christi went into cardiac arrest. When I found her she was blue gray and unresponsive. I called out to Deana and started CPR. She called 911 and our neighbors. After a pleading blessing, she was transported to the nearest hospital and then flown to Phoenix Children's. Deana flew with her and I drove. The former student of mine that was on the ambulance crew that day went home and told his mom, "There's no way she'll make it." With a few close calls on the flight, they arrived at Phoenix Children's hospital where they put her into a medically induced coma to save her life. She would stay that way for the next 2 weeks. 

After my 3 hour drive to the hospital one of the doctors took me aside before I was allowed to see her - to convey the severity of the situation and to temper my expectations. Doctors and nurses rushed in and out for a while, but then things slowed down and it was just me and her. It was pretty clear - our lives were going to change again forever. The eerie way the monitor showing her brain waves drew a continuous flat straight green line day after day testified to it. We yearned for her, talked and sang to her, prayed for her and hoped. We wondered too - what was her experience like? What would it be like if/when she awoke? We talked to each other too - about how important it was to provide as much normalcy for our other 4 children as possible. They couldn't feel they were less important.

So many around us fasted and prayed for her and us during that time. When she finally woke up two weeks later we found out slowly that she could no longer see, speak, eat, or even move her muscles voluntarily. But she was still here and still ours! Maybe we could help her regain function. We were excited to help her as much as possible. Fasting, prayers, improvements and setbacks filled our days and nights before an insurance company and a bedbug outbreak sent us packing back up the mountain and home.

Since that time we have worked hard to improve Christi's life. We moved back to Utah to be close to Primary Children's and family. We learned an intense medication and physical care regiment and how to de and re-construct her wheelchair to fit into the trunk of our car. We've been with her in the hospital over and over and over again. Long enough to learn the lingo, know many of the doctors and nurses that work there, and the staff at the Ronald McDonald house. Sometimes it has been intense - like the time all her doctors assembled in a room to tell us that they felt like she was in decline and encourage us to put her on hospice for what they expected to be the last weeks or months of her life - that was back in 2017. She likes to defy the odds.

She has helped teach my children compassion and service without expectation. She has taught me lessons about topics from determination and grit, to love and simple joy. She has brought us neighbors and friends full of love. 

Deana bears such an immense burden for her! Countless daytime hours for stretching and therapies, medications and bowel regimens as well as meeting the needs of our other 4 children. I, for nearly the past decade, have covered the night shift. I slept on a beanbag outside her door for most of it, but now on a foldable mattress beside her bed. Helping her has been a helping us for a long time. (to be continued)