JellyBean, Whole and Wholly Loved

I took JellyBean to the hospital today for a surgical consult. It wasn’t anything serious. One of those fairly common birth defects that can heal itself and, as it turns out, did. But sitting in the waiting room in one corner of that enormous hospital, I remembered the first time I brought JellyBean to that place, for something unrelated.

When JellyBean was born after a mere fifteen hours of labor, I said I was too tired to hold her. Judging by the disapproving silence of the nurses, this is a major birth faux pas. A nurse put tiny little Jellybean into the arms of Az the Doting, and he cradled her like she was the most precious treasure in the world. After watching him for all of thirty seconds, I wanted to hold her too.

I don’t bond immediately with my babies. I hear other mothers say they fell in love with their babies at first sight, and I am happy for them, but I can’t relate. It takes me a few weeks to bond with my baby. Until then I give all the necessary care and cuddles, but I don’t feel many warm fuzzies and I secretly think they look like wrinkly old men instead of beautiful angels (JellyBean was Grandpa Munster; Sweetpea was Buddy Hackett). Something magical happens when they are about six weeks old and they become the most beautiful things in the world and I melt into a gooey puddle in shoes.

When JellyBean was ten days old, she had an episode like a seizure. Her body went rigid, her face turned red, and her eyes bugged out and shook back and forth. She wailed in distress. I freaked out, certain that something was terribly wrong with my baby. The episode ended, and I called my mom, who is a nurse. She told me I worried too much. Nothing else happened. I told myself I was being silly.

Over the next few months these episodes continued. It did not happen every time, but sometimes as JellyBean approached a horizontal position, she would stiffen, her eyes would bounce back and forth spasmodically, and she would scream. She turned red and did not breathe. It did not last very long, but it felt like forever. She had one episode when our pediatrician could see it, and the doctor gave us a referral to a pediatric neurologist.

Until we saw the neurologist, I had managed to stay fairly sane. I vascillated between stomach-clenching fear that my baby was terribly sick and the calm assurance that nothing was really wrong. Fortunately, she did her trick for the neurologist, and he said it was nystagmus. He said she should have an MRI to look for brain abnormalities. He tried not to alarm me, but it was clear he was worried. You don’t often get to be the good news guy when you are a pediatric neurologist.

I wore a watch so I could time JellyBean’s episodes. Ten seconds. They felt like years. My baby was in pain and I couldn’t stop it. I did not tell most people what was going on with her. If someone held her in the wrong position she would have an episode. I saw her have an episode in my mom-in-law’s arms once. It was unbearable to me that she could be in distress and the person holding her would not even notice. I clung to my baby. I rarely let her go. I never let anyone else hold her.

I thought my baby was broken. I thought there was something wrong with me, that I was broken because I couldn’t make a healthy baby. I resented her for being imperfect. I loved her for needing so much from me. I longed to soothe her and panicked that I couldn’t. I feared she would be fatally sick. I feared that my fears were irrational and everyone would laugh at me. I prayed desperately. I wanted to cry and I did and I did.

The appointment for the MRI was on the same day that Az and I were witnesses in a trial. We spent the morning at the courthouse with our nursing six-week-old, and the afternoon at the hospital. I remember wearing my most upstanding-citizen wool blazer, and broiling in the doctor’s office. The packet on preparing for the MRI had said no metal in the baby’s clothing. After much searching, I found one outfit that had no snaps or zippers: a lacy, puff-sleeved pink shirt and pants that my mom-in-law had given us, elegant and beautiful and (it seemed to me) terribly inappropriate. I asked a friend to meet us for moral support, in case Az had to leave the hospital early for work.

Little children don’t stay still in an MRI. They must be sedated. The nurse fed my baby chloral hydrate from a syringe, and she cried from the bitter taste. She began to lose consciousness. The nurse carried her to the machine and arranged her on the platform. They attached a monitor to her, draped blankets around her, and then the platform moved into the machine.

I sat on a chair in the MRI room and watched her tiny little face in the light of the machine. She wasn’t even ten pounds yet. Az was in the room behind me, watching the tests with the technician. They also did a functional MRI to test hearing, and he saw her brain light up in multi-colors when they played a tone in each ear.

The test ended, and all was well. She woke up from the anesthesia, though she was groggy for the rest of the day. We restored ourselves with comfort food at a favorite restaurant, while JellyBean snoozed in her car seat next to us. That night she slept through the night for the first time.

Her brain was normal. There was no diagnosis. The episodes continued.

By the time she was two months old, she refused to sleep on her back. Horizontal on her back was the position that brought on the episodes. If I laid her down on her back she screamed. That whole cry it out thing? One night she cried for four hours until I gave up. After weeks of desperation, I finally relented and laid her on her stomach at night. I was so psychotic from lack of sleep, and so convinced by the Back to Sleep campaign that stomach-sleeping was murder, that I seriously thought: Maybe I could set the alarm to wake me every fifteen minutes all night so I could make sure she’s still breathing. My husband and mother talked me back to sanity. My baby slept on her stomach - she really slept - and it (I) didn’t kill her.

Finally my sister, who was studying for a degree in a medical field, recommended WebMD. I’m glad I didn’t look at this site until the MRI had shown her brain was normal. Nystagmus can be a symptom of some very scary diseases that mean your child never gets to be a grownup. I looked around and found a diagnosis. Our pediatrician confirmed it. Benign paroxysmal positional nystagmus.

And the episodes stopped. Without explanation. She has not had one since she was nine-months-old.

I thought about all this today while I sat in the waiting room with my beautiful two-and-a-half-year-old girl. She sat on my lap watching tv, and I combed her hair over and over, feeling its silky smoothness, watching it shine. I brought the comb to calm myself. She laughed at the tv clowns while I watched her big eyes and bright smile. And I forgot to say then what I want to say now: Thank you, thank you, thank you, God, for my healthy little girl.

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