NDSU Magazine logo - Spring 2008

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Vol. 08, No. 2


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The gift of Perspective

The gift of perspective

I married my high school sweetheart. We had a great time in college, a beautiful wedding, got great jobs and bought a house. We built a fence, bought puppies, and when the dogs were more than a year old, started thinking about having a child.

In November 2005, we were thrilled to learn we were expecting a baby. I took being pregnant seriously and I was going to do it the best way I knew how. It was a privilege, after all. A responsibility. I'm a rule follower. I worked out, took prenatal vitamins, avoided tanning, seafood and hair dye. At our 20-week appointment my typical pregnancy took a thrilling and atypical turn when an ultrasound revealed we were expecting two babies. Twin boys. It was one of the best days of my life.

When you travel by air, finally reach your destination and look back at your journey, it's hard to believe you began it thousands of miles away. Almost two years later, it is hard to imagine where my little family started.

Eight weeks after we learned about the twins, due to unforeseen complications, our babies were born three months premature. Gavin James and Nolan Keith. The loves of my life - I knew it even before they were born. They weighed less than two pounds each, and didn't look at all how I'd imagined.

When I met my babies for the first time, there were all kinds of wires covering their little bodies. Brock's ring fit easily over their hands and slid down their arms. The diapers they wore barely covered the palm of my own hand. I was discharged from the hospital three days later on Mother's Day. It all felt like some mean trick. It was raining out and I felt pathetic, being wheeled out of the hospital, leaving my babies behind. Just opening the car door felt like giving in.

Those first few days were a blur - like a bad dream - running from a villain, except even though your feet are moving, you aren't getting anywhere. Doctors overwhelmed us with facts about apnea episodes, blood transfusions, heart ligations, oxygen saturations, and the undeniable risk of disability from premature birth. Brock and I learned what each of these things meant and became experts on our babies' conditions. When you do your homework, the bliss of ignorance is stripped away. Having knowledge was a blessing and a curse. We found that a small percentage of babies born at less than two pounds emerge from their ordeals with no lasting consequences. We also learned the possible repercussions of such premature births were blindness, deafness, cerebral palsy, learning disabilities, autism, and mental retardation among other things.

My mom brought the boys some stuffed animals the day after they were born. Gavin's was a yellow lion. It sat in the corner of his little bed to keep him company. Something struck me about it then - I think a part of me knew this boy of mine had a lion heart. I didn't know then how much he would need it in the months to come. There were so many times I wished I had the heart of a lion too.

At three weeks, Gavin became gravely ill. We discovered his ailment was a preemie disease called necrotizing enterocolitis, NEC for short. Usually heavy antibiotics through an IV will keep the infection at bay and typically after a week, babies can resume eating and are okay. But Gavin continued to worsen. After three weeks of struggling to bring the NEC under control by a combination of discontinuing feedings, constant bowel X-rays and multiple rounds of antibiotics, my tiny two-pond baby took another terrible turn. Not only was the condition of his intestines not improving, it had gotten worse and his breathing more labored by the hour. We made the decision to life-flight him to Minneapolis Children's hospital in hopes that surgical intervention could save his life. I cried the entire way to Minneapolis that night in a rainstorm, and all the while praying someone there could bring Gavin back from the brink. I spent the next three weeks at his bedside, leaving Brock and Nolan in the hospital in Fargo. I was torn about missing all those moments with Nolan, but couldn't leave Gavin for fear he may not be there when I returned.

My life in those months after the boys' birth was bittersweet. It seemed with every decent day Gavin had, there was a devastating setback. Several times a day I would call the hospital in Fargo to check on Nolan. The nurses there would report his exciting accomplishments - drinking his first bottle, taking his first bath, breathing on his own. I was able to celebrate all of those milestones with him through photos, but I'd have given anything to be there in person. There was a twinge of guilt each time I felt joy about something Nolan had done, because my other child was clinging to life in the next room. It's amazing, the games a person's mind plays when in a deep state of grief. Though no one's life had been lost, I still felt incredible grief. Grief for the pregnancy I didn't get to finish, for the healthy babies we were going to have, and for the perfect little family Brock and I had planned. There is one thing I knew even then - nothing was going to be simple ever again.

Gavin underwent surgery three days after arriving in Minneapolis. He reached a critical point in surgery in which they thought he may be lost. He came through that surgery, but was critically ill.

On July 22, 2006, four days before the boys' due date, Nolan came home from the hospital. Weighing 4 lbs. 11 oz. at discharge, Nolan was a tiny baby with big demands. It was a day we had been waiting for, yet we couldn't help being sad at the same time. Thoughts crept in - what would it have been like had Gavin never been sick? What if we were bringing them home together? Would Gavin ever get to come home?

Over the next few months, Gavin underwent a series of six more surgeries to bring his digestive system to some sort of balance. Those procedures and the aftermath of NEC left him with short bowel syndrome. Short bowel is brought about when a person is left with so little intestine they can't absorb the necessary nutrients from food to survive without supplemental nutrition. Doctors said people with short bowel as severe as his are almost always dependent on some amount of intravenous nutrition to live. In most cases like this, patients eventually die because over time, the intravenous feeding slowly kills the liver. Gavin would likely need a short bowel and liver transplant to ever have hope of surviving without it. At that time, transplants of this kind had a very low success rate. Gavin's digestive system needed time to heal and the intravenous feedings were allowing it to do that. At the same time, it was destroying his liver. It was a double-edged sword and Gavin was in a race against the clock.

As time wore on, we were unable to be with Gavin during the weekdays. We had another fragile preemie to care for at home and jobs we needed to keep. Every weekend, we packed up Nolan and spent two straight days with Gavin at his bedside in Minneapolis Children's hospital. It was like a marathon that had no end in sight. It became our routine and our life for eight months. I'd call to check on Gavin every day at 10 a.m. and again at 10 p.m. and every day asked about weight, blood work, breathing, eating, was he happy today?

The nights were worse than days. It's an incredibly painful thing to know your baby is alone in a hospital and you're unable to hold him like you should. So every night we'd hear of all the cute things he did from his wonderful nurses. Tell him hello. Tell him we love him, miss him. Give him a hug goodnight.

In September of 2006, Gavin's hearing was tested. He had missed the newborn screening hospitals usually do, and was at high risk for hearing loss. He'd been on a ventilator, was a very low birth weight baby, and had been on powerful antibiotics for the majority of his short life. Test results showed Gavin was profoundly deaf. The day the news came, I felt like someone had dealt our family a life sentence. It was a permanent, devastating blow. I thought about how he'd never tell jokes and hear someone laugh at them, or have music move him, hear a bird chirp, rain falling, someone whispering words of love in his ear.

As Gavin's liver disease worsened, Brock became more determined to find a way to save our son. He found an experimental study being done by a doctor at Boston Children's Hospital. Dr. Mark Puder was facilitating a study using an omega 3 fish-oil based drug called Omegaven. The study showed a reversal of liver disease in short bowl patients when soy fat was replaced by Omegaven.

He knew it was a long shot, but Brock wrote Dr. Puder an email, pleading with him to help save Gavin. What happened next was nothing short of a miracle. Within hours of sending his email, Brock was on the phone with Dr. Puder devising a way to get Omegaven for Gavin. The plan was not without its hang-ups. The biggest one? Omegaven had not been approved by the FDA for use in the United States. We would need special permission from the FDA for emergency use of Omegaven before it could be ordered from the pharmaceutical company who manufactures it in Germany. The second challenge would be getting the internal review board and Gavin's medical team at Minneapolis Children's on-board with our decision to pursue the Omegaven treatments. They'd have to be willing to take the risk with us.

It took ten weeks for the Minneapolis Children's internal review board to make the decision to allow Omegaven into the hospital for Gavin's use and another two weeks for his medical team to get the project off the ground. During that time, all we could do was watch Gavin's labs get worse and watch him struggle with feedings. Gavin's course of Omegaven lasted for a little over a month. His labs looked better and better each week and his body was able to start tolerating more feedings. He had a new twinkle in his eyes and more energy - both signs of hope. We'd hoped to have him home by Christmas, but right after Thanksgiving, he came down with a crippling case of stomach flu. Christmas was spent in Gavin's hospital room and a hotel. All we could do was pray and wait and hope he'd be ready to come home soon. By the middle of January 2007, Gavin reached nearly full feedings.

The day seemed like it would never arrive and once a date was set for his homecoming, we were afraid to tell anyone. We'd had some potential discharge dates set for him in the past, only to have our hopes crushed by a setback. The nurses trained us to change his central line dressing, how to give medicine through a feeding tube, and how to administer intravenous feedings at home. It was terrifying and thrilling all at once to be bringing our baby home. On January 30, 2007, Gavin came home with us for the first time.

Having him home was an overwhelming adjustment for all of us. It was hectic, but we were happy. Nolan seemed to adjust the best of all. He was more relaxed with his brother home. I think it has to do with the twin connection everyone says exists. It felt so wonderful to have sleepless nights, 17 doses of medication a day, a feeding tube, and IVs to deal with. It was not what we had imagined, but exactly what we had prayed for. Gavin was home to stay. Rocking him to sleep that first night in the nursery we'd painted almost a year earlier - I felt it all come together. Our family was complete. We were whole again.

Shortly after Gavin was diagnosed with hearing loss, he was fitted with hearing aids. We learned that early identification is key to language development in hearing impaired children. The more sound a child can gain access to early on, the more successful that child will be with developing language and being able to learn. We learned of cochlear implants through Gavin's audiologist at Children's and wanted to investigate it further as an option for him. If he was indeed a candidate and the cochlear implants worked for him, there was a chance he'd develop completely normal speech.

In May of 2007, Gavin was screened by the cochlear implant team at the University of Minnesota. We were thrilled to find out he was an ideal candidate and a date was set for surgery. Though most implant recipients today have one implant, more and more people are opting for bilateral implants to improve speech perception, sound localization, and hearing in noise. After much deliberation, we made the decision to go with bilateral implants for Gavin. The surgery was not without risks. Among them, heightened risk for meningitis, infection, and facial paralysis. All of Gavin's remaining natural hearing would be destroyed by the implant surgery. Despite those risks, Brock and I viewed having the surgery as Gavin's best chance at a normal life. Implants would allow him to interact with others using his voice. With the right speech therapy and education, he would learn to listen and speak.

The cochlear implant surgeries took place in August and December 2007. His implants have been activated and Gavin is learning to talk. Every time I hear his little husky voice utter something meaningful, my heart swells. I am so grateful Gavin has been given the gift of hearing through the miracles of modern medicine.

Despite the adversity the boys have faced, they've developed into absolutely normal, chubby-cheeked, rambunctious toddlers. There's one speed at our house. Fast.

Nolan is a real macho man. He is confidant and smart, loves to give kisses, but has a bad temper and doesn't listen like he should. Something tells me he's going to be a challenge. He has some great dance moves.

Gavin is tenacious and tender. When he smiles, he looks like he's just heard a really good joke. He's a quick study, a social butterfly, loves books, cheese, and the music of James Taylor. He too has some pretty wicked dance moves.

I feel privileged to have been given the gift of perspective. Nothing is perfect or simple, but it sure feels right.

-- Crystal Maus

Student Focused. Land Grant. Research University.