Monday, March 26, 2007

Story describing our journey

I recently came across a story on the Internet that described our journey from Kevin's diagnosis to implantation to a tee! This story could be about us if only we replaced our names with theirs. It gave me the chills to read because it was so accurate with the emotions we encountered while dealing with the diagnosis of Kevin. I wanted to copy this to my blog so that I will always have it, but please note, I did not write this.

March 26, 2007

The audiologist rechecked the connections and made sure the earpieces were still firmly positioned in Sam's ears. Even as the noise being pumped directly into his head became audible to the rest of us, our infant son slept.

Limp lines crossed the computer screen for half an hour, and I got the sinking feeling the audiologist only continued to stare at them to avoid making eye contact with my wife and me. She was girding herself to share bad news.

Only 3 months earlier, our second child, Sam, was born and we enjoyed one of the happiest days of our lives. This day was one of the saddest. The fear that we both carried but largely avoided discussing was confirmed: Sam was deaf.

Now, Sam is almost a year old and we're quickly approaching the day he will receive a cochlear implant. It's an exciting time for our family. The pain we felt on the January morning when his hearing loss was confirmed faded as we learned about hearing loss and how the implant could help Sam navigate a hearing world. Information has been our lifeblood, and we hope sharing our story benefits others who face similar situations.

A New Reality
With no family history of hearing loss, my wife, Teresa, and I never considered the possibility that we might have a child who was deaf. And when Sam failed his newborn screening the day after he was born, the woman who performed the test told us inaccurate results were common. A month later, Sam failed another screening at our pediatrician's office. The audiologist explained that the parts of Sam's inner ear worked, but the equipment wasn't showing a response from the tiny hair cells inside his cochlea. Leftover fluid from birth was the likely culprit, he said.

Any explanation seemed reasonable because the idea that our son could have a significant hearing loss seemed so unreasonable. Still, we were coming to grips with that reality. Medical professionals, family, and friends all asked the same question: Does he respond to loud noises at home? Each time we answered that question we were forced to be a little more honest with ourselves.

Whether Teresa yelled his name from across the room or I clapped my hands just behind his head, Sam never budged. We debated his blinks and gestures, but we were just being wishful. That became clear at the third hearing screening, when the audiologist was noticeably somber. There were no new possible explanations to consider this time, just a recommendation that we make an appointment with a children’s hospital for a more involved test.

On January 9, we arrived at the hospital for an ABR (auditory brainstem response) test. The audiologist escorted us from the waiting area to a dimly lit room filled with computer equipment and wires. In a soft voice, she explained the test and told us it would take about an hour. It didn't.

Her demeanor was a comfort as we settled in for the test, but as the test wore on we could read the growing disappointment in her face. Teresa was sobbing and I was choking back tears as the audiologist turned to us to explain the outcome.

The test measured Sam's brain waves in response to sound at various volumes and pitches. He showed no response. That means he never heard his mother's lullabies or his 2-year-old brother's laugh. In fact, based on the results, Sam wouldn't hear a freight train if he were close enough to feel the wind on his face as it rushed past. The audiologist said it differently, but those were the harsh facts as I saw them.

Teresa and I asked about everything from the finer points of the word "profound" to the reliability of the testing equipment, even though we knew better. After a few minutes, the audiologist excused herself to give my wife and me time alone. We held a tight embrace and cried.

Sorrow, Guilt, and Fear
We had been through the common ups and downs of being new parents, but this was our first experience with full-fledged parental anguish. We were wounded and helpless, afraid to leave the room. Sorrow, guilt, and fear filled my mind as I thought about how ill-equipped we were to help Sam.

"It’s not fair," my wife said between bouts of tears. She searched for answers where there were none: Was it the glass of champagne she drank before knowing she was pregnant? Could it have been the cream the dermatologist prescribed for a rash? Or was it the delivery itself? To me, determining the cause seemed less important than figuring out what to do.

What would we do? Sam seemed like a different baby. We loved him just as much as before, but we weren't sure how to help him. We hugged him, kissed him, put him back in his car seat and, with business cards, reading material, and videos in hand, began to make our way out of the hospital.

We shed a lot of tears over the next few days as we told and retold the news. We began meeting with various medical professionals almost immediately. Family and friends called and visited, helping us get back into a normal rhythm.

One visitor, my brother-in-law, got me to laugh for the first time by reflecting on when his daughter got a liver transplant. "Do people tell you God doesn't give you any more than you can handle?" he asked, hitting on a line of encouragement Teresa and I had heard more than once. "I used to say, 'If that's true, He must have me confused with someone else.' "

It was the perfect way to describe how my wife and I felt as our journey with Sam began.

Try to remember leaving the maternity ward with your first child. There's no owner's manual or toll-free help line, just the weighty realization that you are on your own with the fragile little person whose car seat you can barely master. Now multiply that feeling by 100.

That's the way Teresa and I felt after learning that Sam was deaf. We didn't know a thing about deafness or cochlear implants, but in the 9 months between Sam's diagnosis and surgery we committed ourselves to learn. In the process, we empowered ourselves to make decisions with confidence as we navigated the maze of medical, bureaucratic, and practical issues that parents in our position must confront.

We also sought to answer more personal questions. For Teresa, there was a spiritual component. While dedicating herself to reading books and identifying resources in our area, she also held out for a miracle. Meanwhile, I wanted to understand why some people in the deaf community, including one of my coworkers, were so against cochlear implants.

Teresa is a stay-at-home mom who used our children's daily naptime as an opportunity to employ skills she developed as a former bank auditor. If someone at the county level couldn't answer a question about resources available to the deaf, she sought help at the state level. If the state was slow, she contacted a politician. My wife's tenacity is the major reason we became so informed, and I will always be grateful to Teresa for charting our path.

With a full-time job, I did less of the legwork. Still, I made sure my actions supported all of my wife's hard work and lessened the day-to-day stress related to it. We participated in online seminars and watched videos together, and neither of us attended any of the roughly two dozen formal and informal appointments we made without the other. Teamwork made us stronger and more effective.

Lessons Learned
One of the first lessons we learned was to be cautious about jumping on the Internet for quick answers before you know what you're dealing with. We found ourselves worrying about rare, heartbreaking maladies that we ultimately learned Sam did not have. The hospital proved to be a better place for answers. We met with a surgeon the same week that we learned Sam was deaf. From there, the hospital loaned us hearing aids and set appointments for an eye exam, a CAT scan, an MRI, genetic screening, and other testing associated with the implant process.

Teresa laid all the groundwork necessary for a teacher of the deaf from the state's Early Intervention program to start coming out to work with Sam on a weekly basis. She also began what turned out to be a lengthy process to get Sam his own hearing aids through the state.

The hearing aid trial period is a necessary step in the implant process. Given the severity of Sam's hearing loss, the aids didn't provide much benefit. To Sam, they were little more than something handy to grab and chomp on. But we persisted on the advice of a parent that we met. Sam needs to grow accustomed to this sort of equipment, and thankfully his desire to remove and eat his hearing aids eventually subsided.

The hospital gave us contact information for other families whose kids had gotten cochlear implants. Also, soon after Teresa contacted a state agency, we began receiving calls from people in New Jersey's Parent to Parent Program, a statewide network of parents supporting families of children with developmental delays, disabilities, and special health needs. Having changed the batteries, gone to the therapy sessions, and watched their children blossom, families with real-life experience proved to be our greatest resource. Just as there is a deaf community, there is a community comprised of parents whose children have implants.

Reaching Out
People shared their stories and even welcomed us into their homes, filling us with hope. Through them, my wife and I realized that prayer, the blessed oil she applied to Sam's ears, and the trips to Saint Katharine Drexel's shrine would not result in Sam miraculously waking up one day as a hearing child. The cochlear implant would be Sam's miracle, and the kindness of other parents helped us see it that way.

About 5 months into the process, we decided to pursue a second opinion at another, larger children's hospital. I was reluctant to look elsewhere given the level of attention Sam received at the smaller hospital, where we ultimately stayed. While the second opinion didn't provide anything new from a medical perspective, I'm glad we went for it.

The hospital staff invited us to a picnic for families of children with implants. We mingled with parents, surgeons, audiologists and, most important, kids. We got to see and speak with children whose abilities astonished us. We also received firsthand reviews of a nearby school that specializes in kids with implants.

We spoke to parents about sign language. Teresa and I hesitated to pursue signing for fear that it could impede the verbal strides that we hope Sam will make after he receives the implant. The parents calmed those concerns, inspiring us to use basic signs that, at 11 months, Sam is starting to try himself. It's incredibly gratifying to see Sam give his best effort on the sign for milk or smile and kick his legs with excitement when Teresa makes a sign for cookie.

We're not the kind of people who are comfortable striking up conversations with strangers, but we've learned that being more outgoing can benefit Sam. Teresa befriended a young woman with an implant working in Walgreen's and learned that she's thriving in a local high school. After a call to a state senator's office went unreturned, I seized an opportunity to speak with him as he was waiting for his car at Jiffy-Lube, opening a relationship with someone who could someday serve as an important advocate for Sam's schooling.

A Learning Experience
We tried to take any opportunity to learn that arose. I didn't know what to think on my first day back at work when my deaf coworker wrote me a note that said: "I'm jealous. You and your wife are so lucky to have a deaf son." I couldn't begin to comprehend how someone could feel that way, so I accepted his subsequent invitation to learn more about the deaf world.

He emailed me a list of upcoming events, including an all-deaf poker tournament about an hour's drive from my home. On the Friday before the game, I told him I might attend, but failed to be definitive. The next day I felt compelled to go.

My coworker, not expecting me to show up, wasn't there. I was alone with perhaps 60 deaf people in a room filled with gestures punctuated with sounds of slapping and laughter, but no words. I felt very awkward as I struggled to communicate. After about 40 minutes, I found someone's hearing spouse, who volunteered to help me.

Person after person at the poker tournament told me the implant was a bad idea, but their reasoning did not move me. Their opposition seemed to be founded in dedication to the deaf community and in a strong belief that hearing loss is not an impediment. I understood and sincerely appreciated those positions, but the conversations didn't produce the most meaningful lesson of that day.

I was welcomed into this corner of the deaf world with open arms, yet it was clear that I wasn't part of it. I imagined the isolation that I felt as I milled around the room as an outsider would be something Sam could face on a daily basis in the hearing world if we didn't give him the chance to gain the ability to listen and speak. Being uncomfortable there made me very comfortable with our decision to pursue the cochlear implant.

In the 9 months leading up to surgery, we found comfort in the answers to virtually every question we posed. Now we were about to hand Sam over for his procedure, so any unexpected bit of information would give us pause — even what the surgeon had for breakfast.

"Coffee and a danish?" Teresa asked, obviously thinking a heartier breakfast was in order. The surgeon, recognizing our somewhat irrational state, quickly added that he drank some orange juice, too.

The Big Day
People who do this kind of thing for a living say cochlear implant surgery is fairly straightforward. While we have no reason to doubt them, it's difficult to casually digest words like "mastoidectomy" in a description of what is in store for your child. From the moment we woke on the day of surgery, our excitement about Sam's life after surgery was tempered by anxiety about the risks, no matter how small.

Sam's day started at 4:00 a.m., when the window was closing on his last opportunity to drink clear liquids before surgery. He rubbed his eyes with the backs of his hands and gave his mom a big smile, but showed no interest in an early-morning gulp of Pedialyte. Teresa put him back in his crib until we were ready to leave for the hospital a little more than an hour later.

Sam was awake for the entire ride and, despite limited sleep, no food, and no liquids, was in a good mood. Once we arrived at 6:30 a.m., we bounced from admissions to a waiting area to a room just outside the operating room, answering questions and signing papers at each stop along the way.

Sam watched a "Barney" video as nurses hustled in and out to change him into a gown, put an ID tag on his ankle, and check his vital signs. He was unfazed, but Teresa and I grew more emotional as the level of activity let us know Sam would be going into surgery soon.

That's when Sam's surgeon stopped in. We took advantage of our last opportunity to ask him questions, covering topics ranging from what he ate for breakfast to precautions they would take to prevent complications during surgery. The surgeon answered each question with calming confidence. The surgery is the easy part, he told us, no doubt noticing our concern.

Teresa said, "Please take care of Sam like he's one of your own." The doctor promised he would, encouraged us not to worry, and left the room.

Before long the anesthesia team came in. They gave Sam a mild sedative to prevent separation anxiety and let us say our goodbyes. Sam traded smiles with the anesthesiologist and reached for her surgical mask as she carried him away. Teresa and I leaned out the door to watch every step until the two of them crossed through a set of swinging doors.

From there we went out to sit among other anxious parents in a waiting area for what we were told could be a 4-hour stay. A nurse gave us our first update after an hour, then came back an hour later with unexpected news: Things went so well that the doctor was already closing Sam's incision. After meeting with the surgeons about 20 minutes later, we joined Sam in the post-anesthesia care unit.

A Quick Recovery
Sam was lying on a gurney with a nurse by his side, his little head wrapped in a turban-like bandage. His face was a little puffy, but overall he looked better than we thought he would. Sam remained unconscious for a good 4 hours before he began to rub his eyes and cry out occasionally as the doctors transitioned his pain medication coming through the IV — from morphine to Tylenol with codeine.

As time passed, the crowd of children recovering from surgery grew and cries sporadically rang out from different directions. Parents entered the room with an air of purpose that peaked upon identifying their children and then turned gentle as they approached the bedside of their little ones. You couldn't help but count your blessings in that room.

Construction was going on at the hospital, limiting the number of available rooms. In the late afternoon we were moved to a second holding area, where we stayed until about 8:00 p.m. when Sam was admitted for the evening. Sam shared a room with another child who received an implant shortly after him, giving our families a common bond to discuss.

Sam took his first drink at midnight and drank even more at 4:00 a.m. By morning he was ready for breakfast and seemed to be acting like himself. It was a huge relief to see his smile again. A doctor on duty removed Sam's bandage, and the surgery site looked great. A small strip of surgical tape covered a thin C-shaped line that ran behind Sam's right ear. It appeared clean and tightly sutured, relieving concerns we had about the need for us to perform wound-care duties at home. We took turns feeling the quarter-sized bump made by the implant's internal component, located nearby but more toward the back of his head.

Our only nervous moment came when Sam woke from his morning nap with a significant dent in his head from the crib rail. The doctor assured us that it would go away as his swelling subsided, and he was right.

Surgery day was long and emotionally taxing at times, but in the end Sam's doctor delivered on his prediction of a smooth outcome — despite being fueled by little more than caffeine and pastry. We entrusted our child to skilled, compassionate professionals, and they treated him like he was one of their own.

1 comment:

Shiloh said...

Hello. I found your site on a link on baby Drew's site. My son Isaac was born profoundly deaf and received a CI on Sept. 25th 2006. He is doing really well now. He is starting to talk now and it is so amazing! CI kids are the most amazing kids. I had some of the same feelings you are describing. Questioning the pregnancy, my relationship with God etc. I too was waiting on a miracle healing. God chose a different way to manifest this miracle...through the CI. It is such an amazing testimony now and will be for the rest of Isaac's life. God Bless you and your family. Enjoy Kevin's journey with sound. There will be many tears of joy. You can check out Isaac's blog anytime. We will have the next addition to our family on May 23rd and would be equally thrilled if our next son is born deaf too. Thanks for sharing your story.
Shiloh (Isaac's Mom)