Thursday, November 7, 2013

Comfort and Heartbreak

The Newborn Intensive Care Unit is one of the most hopeful and hopeless places I've ever been. Tiny bodies fight so hard to survive, to live, to thrive. They want to breathe, to heal, to move.

The day after Baby Rah was born, he was cut open and repaired. He could not move for the first week: he lay still, ventilated, sedated. The first time I held him was one week after he was born. The nurses kindly resituated the dozens of tubes and cords that connected him to monitors, oxygen, hydration, nutrition, pain medication, and one that drained body fluids. His body was so light and tiny, so worn out, so beautiful and heartbreaking.

Two days later he underwent his second surgery. His face was swollen and bruised. His nose was enlarged and his lip bloodied. We joked that he looked like he'd been in a bar fight. But I knew this meant we'd be in the NICU even longer. Longer hours, days, weeks, months.

The longer we stayed, the more jealous I felt of those families who left so soon. The baby who was hooked up to ten different machines when he came in was home within ten days. The baby whose parents giggled through their discharge training left after a day. Even the baby with spina bifida who had fluid on his brain was discharged after two weeks.

Discharge is an emotional time in the NICU. Everyone is so happy for the family whose baby finally got to go home and be with his or her family. But it is such a reminder to those of us who stay that our babies are still there, still on pain medication, still not eating or breathing on their own. I must have listened to the infant CPR video six times before our official discharge. I can still hear the speaker's voice in my head: "Say it like you mean it: 'Hey you! Call 911 now!'" While it seems silly in the video, our nurse Jane made sure we understood that if we don't say it like we mean it, the other person may stop and say, "What's going on?" We need to be forceful, so we don't waste time.

Baby Rah has given us plenty of scares in this last year. He was five days old when the nurses took him off the ventilator and he stopped breathing. Jane kindly looked at me and gave me permission to leave while they revived him. He had such severe reflux in the spring we wondered if there was a problem with his esophageal repair and rushed to the surgeon for another esophagram. He had even inexplicably passed out a couple of times. It was May when he had a sedated echocardiogram. I couldn't believe how emotionally taxing it was. He was sleeping, but looked so much like that baby we couldn't hold, who stayed so still for his first week. Then there was the night in August Ji decided to bring Rah up onto his bed, which Rah immediately rolled off and hit his head. That's what I get for leaving the room for one minute.

It was mid-September when James rushed into the room with a limp baby in is arms. He recovered quickly after a few chest compressions and blowing air into his face. The next morning it happened again. My dad's doctor referred us to a gastroenterologist to try to figure out the problem. We were given stronger medication.

But the problems didn't stop with the new medication. The day before his first birthday, we hit crisis.

It was around 3:30 Rah finished eating his bottle, and I laid him in his crib for a nap. Ji was asleep in the room, so the room was dark. He cried for a little but then quieted down. Not long after the crying stopped, I stood outside his door and heard gagging and gurgling sounds. I turned him on his side so he could throw up. He was vomiting most of the milk he had just drank, but I then noticed he hadn't inhaled since he started throwing up.

I carried him to the hallway and performed about four cycles of CPR on him before he revived. He was grayish-blue and limp. His eyes had rolled back. Boo came home in time to call 911. She was so brave. She told them what was happening and gave them our address. Ambulances, police cars, and a fire engine showed up outside our house. Our dear friends and wonderful neighbors, the Wilsons, brought Boo and Ji to their house.

We spent some time in the local ER, but they transferred us to Primary Children's within about an hour because of all of Rah's complications. He took a good nap on the ambulance ride, so he was cheerful and cute by the time we got to the hospital. I'm sure the staff was thinking, "What's this baby doing here?" He had a bottle at bedtime and, once again, started vomiting and turning blue. The medical staff revived him, and we were sent to intensive care.

Baby Rah spent his first birthday undergoing a series of tests and being deprived of food. We started with another esophagram. His esophagus appears to have no strictures or leaks or lesions. He had a swallow study done that showed his delays in swallowing and risk of aspirations with thin liquids. But the swallow study didn't explain the apnea episodes. Rah's good friend, Dr. Meier, came with his ENT team and did a larynoscopy to check out his nose and throat. Still, no answers.

At the end of the day, he was finally able to eat four ounces of milk.

As suspected, Rah's episodes were likely a combination of several factors. We were never given one explanation because one does not exists, as far as we could tell. He had a mild cold and parainfluenza 4, so the viruses likely contributed to the problem.

Not everyone will have these kinds of experiences; I realize that. But last year before this baby was born I didn't suspect we would spend forty-seven days in the NICU, put him through four surgeries, or have to revive a blue baby.

So here's some advice:

Learn CPR. Everyone should know CPR. Everyone who ever takes care of an infant should know infant CPR. 

Stay calm. Once everything is under control, you can lose it. Cry your eyes out later, but don't freak out until the situation is handled.

Pray. A lot. The Lord brings us comfort even in those hopeless moments when we wonder if this is it, we may not be able to do any more. Because even if we can't, He can. And He does. Even if it means letting go.

Just remember that life is a blessing. That blessing may be brief or long. It may be joyful or tragic. But we are blessed to live, every moment we are given.

Saturday, November 2, 2013

Things Have Changed

Music is an inherited passion. My dad is a guitarist; my mom is a singer. My siblings and I grew up with Devo, Frank Zappa, The Beatles, The Cars, and even Adrian Belew blasting from the record player and eight-track.

Music is more than soundtrack for me; music is memory. It's the reminder of the first boy who said he loved me and gave me "Something." It's the mad heartbreak that drove me to "Precious Things" and the loneliness of "Circle." "Marrakesh Express" is my sister dancing with a green sweater at the thrift store. "I Want You" is the hope of a life I never lived with a boy who gave me more disappointment than faith.

As a teenager I gathered friends who shared my musical passions: The Beatles, Tori Amos, Grateful Dead. I once collected CDs---singles, rarities, anthologies, anything---from my favorite artists. There once was a time when I would follow the careers of a several musicians and make sure I never missed out on new albums or concerts.

Last year, about ten days before Baby Rah was born and our lives went into a tailspin, I went with my sister, Kirstin, to see Garbage . . . and an unbelievably happy/drunk Shirley Manson forgetting the lyrics to her own songs.
Kirstin in her Garbage shirt

Despite, or because of, Shirley Manson's whiskey-inspired declarations of love for her band and lying on the stage with a drunken cat caller and explaining "this is my show," the concert was unforgettable.

Two days later Kirstin texted and told me Aimee Mann was performing in Salt Lake---that night. I've never seen Aimee Mann in concert, even though I've been a fan for more than a decade. That was the first time she had come anywhere near where I lived, and I had no idea she was even coming.

Check out my favorite Aimee Mann video (from her latest album):

Aimee Mann "Charmer"

I hadn't really thought about concerts this past summer, but then at my dad's birthday party Kirstin mentioned that Bob Dylan was coming to Salt Lake . . . in five days.

The first time I saw Bob Dylan in concert was summer of 1999 when he was touring with Paul Simon. I woke up early on a Saturday and stood outside Smith's with my boyfriend at the time, waiting to get tickets first day they were available. I was nervous the show would sell out before we made it to the ticket window.

This time we bought James's ticket at the door.

Bob Dylan doesn't play guitar anymore. He didn't talk to the audience. He didn't jump around. He never showed any enthusiasm. He played piano. He sang. He changed the tunes and lyrics of his songs. I'm not even sure he ever smiled.

He opened with an unfamiliar rendition of "Things Have Changed," the Academy Award-winning tune from the Wonder Boys soundtrack. This was the first new song Dylan released after the end of a relationship that I had thought would be forever. All other Bob Dylan songs were connected with the boy who had gone. "Things Have Changed" helped me move forward, accept the change of plans---maybe in the most cynical possible way. (The chorus is, after all, "I used to care, but things have changed.")

But on this breezy, summer night, I felt it. I found the change all around me---in the wind and the scents, the arms around my waist. Things have changed. Everything had changed. In the fourteen years since I first saw Bob Dylan on stage, I have discovered which things really matter: God, family, stability, confidence, real love.

We stood on the grass and fell into the music. I was wrapped up in James's arms and feeling the words seep into my skin, pulse through my veins, and tangle in my hair.

The power of the moment didn't come from the stage. It came from the intimacy of sharing my self with the man of my life, willingly giving myself wholly to another, sharing the songs of my past with the present and letting myself be led to the future.

I hope eternity is as beautiful as that moment with my love.