May 28, 1998
Today, Cole and I tried to visit my grandma in the ICU. Grandma has a breathing tube, and she is hooked up to morphine. Cole was born right about the same time she started her treatment. I don't know whether it's the cancer or the treatment that is killing her. Her death and Cole's birth are going to be linked. She smiles when Cole is with her, even when she can't move.
Cole and I were waiting in the hallway near a drinking fountain when a trio of pediatric nurses stopped abruptly to admire him. Cole is only four months old. He gets attention because of his red hair.
One of the nurses asked if she could feel his head. She looked concerned. She held him gingerly and smoothed her hand over his head. I felt panicked watching the nurse with Cole, like how I felt when my friend's nine-year-old daughter fell from the swinging bars at the park. There was nothing I could do to stop her fall, even though I yelled out her name.
The nurse said, "I don't mean to alarm you but I think there's something wrong with his head. You need to talk to your pediatrician right away." She handed Cole to me.
"Have you ever noticed that he doesn't have a soft spot?"
"No," I said. "I don't go feeling for his soft spot. This is my first baby."
I felt his head. I made everyone feel his head. "Don't you feel it, right there? There it is."
But I was imagining a prick of a soft spot. I am scared. I can't believe this is happening, but there's no way I can pretend that it is not.
Ultimately, they didn't let Cole in the ICU since he is a baby and it's supposedly a germ factory. I took him to her room window at the side of the hospital. I held him and climbed over a radiator and two large bushes to get there. Grandma was able to turn her head to see him.
As soon as Cole's pediatrician scheduled the X-rays, I knew it was bad. He had a guilty look. He said he would call us with the results.
Cole was diagnosed with craniosynostosis, specifically sagittal synostosis. Our pediatrician didn't catch it. I'm sure he'll do thorough head examinations of newborns from now on.
We saw our first neurosurgeon, Dr. McComb. Craniosynostosis is the premature fusion of one or more of the adaptive fibrous joints between the bones of the skull. The sagittal suture is the long one running front to back in the center of the head. If it fuses prematurely, the head becomes long and narrow since the sides do not expand. The brain grows where it can, and thus the skull pushes out towards the back of the head and the forehead. Dr. McComb explained, "Your son has a socially unacceptable head."
I have become an expert at sagittal synostosis. Sagittal synostosis is not uncommon. It occurs in approximately 1 out of 2,000-2,500 babies. No one knows why. Sagittal synostosis is more frequent in first pregnancies, and two-thirds of the time it occurs in boys. Again, no one knows why. I was careful during my pregnancy. I exercised and stopped drinking caffeine. It doesn't stop me from feeling guilty and analyzing what I might have done wrong. Did I stand to close to the microwave at work? Did I sleep at an angle that caused his head to be wedged?
The only way to correct sagittal synostosis is through surgery. Without surgery, there is a slight risk of "intracranial pressure," with side effects ranging from severe headaches to mental slowness.
Chris and I have seen three neurosurgeons. Dr. Lazareff said that if Cole does not have the surgery, his head will look like the upside down hull of a boat. The operation consists of a lateral zigzag cut being made across the top of the skull and the skull being pulled wider at the sides.
Dr. McComb said sagittal synostosis is considered a deformity, not merely a cosmetic problem. Cole's head will get slightly worse over time. He said that Cole's case is not severe, so it is our choice whether to proceed.
Dr. McComb acts as if the less I know, the better, as if I shouldn't worry about the details. Questions are unpleasant distractions. I dislike him the most, but he is the one we are going to use. He has the best reputation as a neurosurgeon, but his social skills are awful.
Chris asked him if there was any risk involved, and he said, "Of course there is. There's a risk that you might get hit by a car when you leave this building." I felt like slapping him and telling him, "If you mess with my baby, I will kill you." This is the man I have to trust?
Today, I called several mothers whose babies have had the surgery. Most were reluctant to talk to me, saying it is too painful to re-live, and they warn me the most horrible part is the way their babies' heads swelled after the surgery.
One mom said, "You know how people look so bad after they've had plastic surgery? Their eyes get black and blue. Well, imagine how a baby looks after they've had their skull rearranged."
The surgery lasts for three to four hours and requires a blood transfusion. "I know it sounds stupid," the mom told me over the phone, "but I had this horrible feeling his head might pop."
"Their eyes swell shut," she said. "I couldn't even see my baby's eyelashes."
There is a window of time when surgery is most effective. The problem gets worse as his brain grows and his skull is unable to shift. Cole needs the surgery as soon as possible since he's going to be five months old. I hate my pediatrician for not diagnosing Cole earlier.
I woke shaking from a nightmare. In my dream, a friend's infant son had a black and blue inflated head. His eyes were swollen, reduced to two creases. I went to Cole's crib, placed my hand softly on his back, felt the expansion and release of his breathing, and tried to calm down.
I can't sleep. I'm sitting on the patio, in the dark, while I write. There are no clouds; I can clearly see the stars and the moon. I feel like the sky is pressing down on me. The way I feel reminds me of the time I got stuck in the elevator. I was terrified, claustrophobic and shaky. The maintenance worker got the doors open within five minutes, and my body let go of the stress in a burst of relief. This time, it's not going away; plus I'm exhausted and angry.
The complexities of my emotions towards Cole are profound and overwhelming; one of the strongest is my desire to protect him. To have this desire clash with my complete powerlessness over his head is trying. I'm ripped up inside, raw and dissatisfied with the way life works. How can I trust? I have no choice. He is my baby.
The surgery is tomorrow morning.
This morning, we had to talk ourselves into going to the hospital. I am full of rage. In the car while Chris drove us, I stared out the window at the people in their cars and hated everyone. Anger. The only time it dissipated is when I looked at Cole in his car seat, calmly staring out his own car window -- then I was weepy. This kind of misanthropy is new to me, completely irrational. I would love to get in a fight with someone, preferably a male, take a wild punch. Come to think of it, Dr. McComb would be my favored candidate, which makes no sense considering my complete reliance upon him. The closest emotion is anger -- everything else is fear.
My body doesn't feel like my own. I feel like I'm floating above myself, and I'm not me. I'm watching the other me do all the things she's supposed to do. There she goes down the hospital hall holding her baby -- I watch her -- but it's really me, and that's what kills. I'm moving automatically, but my heart and soul are somewhere safer, protected and defensive.
We waited in pre-op with all the desperate families and children. One man in the corner was weeping. The other parents exchanged comforting glances and smiles our way, but everyone was too afraid to talk. The veterans were more at ease, like the parents of a six-year-old who is on her tenth surgery. The mom placed a hand on my back and told me that everything was going to be okay.
Cole looked so cute in his blue pajamas with the snaps at the back. He was holding his silky and sucking two fingers. He was subdued and pensive. The nurses came to take him. We walked to the elevator, and they told Chris and I to say goodbye to our son. I hugged him, kissed him, and passed him to the nurses. I could not look at him or the nurses. I just cried. Chris said, "Goodbye Cole. We love you." We stood at the elevator long after the doors closed and Cole disappeared. Cole is so trusting, sweet, and full of love. He trusted these people, trusted his parents, and we let him down. He was being taken away to be hurt.
My family came to the hospital for moral support. I wanted them there, but at the same time I didn't want them to talk to me or touch me. The surgery lasted over three hours. During that time, my dad and brother took me to the cafeteria. My skin felt tingly. Even the feel of the vinyl booth on my skin was repulsive. I had that gag type feeling that comes before vomiting. My brother was trying to be cheerful, making small talk, handing me a newspaper, and encouraging me to eat. I had to stop myself from telling him to shut the fuck up. I glared at him instead. Yet, if he would have left me alone, I would have been devastated. Politeness and rationality abandoned me.
Dr. McComb came to the waiting room after the surgery. He said it was a "success" and that "Cole did an excellent job." As if he had any choice. He looked me dead in the eyes while he talked. At that second, I felt close to him, almost like we'd had sex.
The nurses led me to Cole as he came off the anesthesia; they said I should try to comfort him because there is a space of time before they can administer morphine. Cole was screaming. His face was bright red, and there was a bandage wrapped around his head. I had never seen him look that terrified. His eyes were different. It didn't look like Cole. I thought I might pass out. I held him and sobbed. He was shaking and screaming. I thought, This is hell. We're in hell.
The nurses come in every 15 minutes to take his blood pressure and vitals. They used his little leg to take the blood pressure. The nurse told me the swelling will get worse, so not to get my hopes up. She said, "When their eyes swell shut, they are afraid, so you just have to keep talking." One eye had already swollen shut.
I rocked him and thought over and over, This was a huge mistake. I hate this. I wish I were dead so I didn't have to go through this.
Finally, they gave Cole morphine, and now he is sleeping hard on a hospital-type metal crib. The crib has a plastic casing above it and adjustable metal bars surrounding it. The little mattress is like a tiny hospital bed. His head is slightly elevated and his body jerks, surely a reaction to the morphine.
I nursed Cole for the first time since the surgery. His head has begun to swell and it felt awkward, like a water balloon, but he ate readily, which pleases me. I was afraid of his head, that if I moved quickly or turned him the wrong way, his skin would pop and the liquid would seep out. I relaxed a little with the familiarity of his suck. He had a bandage taped from ear to ear. There was dried blood and orange adhesive goop seeping from the bandage. When I put him down, he cried in pain, and then settled.
Any movement hurts him. I never imagined I'd be cooing to my five-month-old, "Don't worry, sweetie-pie. Mommy's going to get you some more morphine."
Happy Fourth of July. Cole is sacked out on morphine. He has the same morphine look my grandma had in ICU: slack mouth, no one home. I felt bleak last night, but today I'm hopeful. The worst is over, and Cole is only going to get better. Chris spent the night last night, and let me go home and sleep. I was so exhausted that when I made it home, I opened the door with the keys and left them in the lock all night. They were waiting for me there this morning.
Cole's poor head is fully bloated. He can't open his eyes. He tries. He peeks a little from one eye, but barely, and then it shuts. I can't see his eyelashes. His head feels like a ripe, squishy melon. It's hot and has doubled in size. Chris says, "He doesn't even look like our baby."
The moms I talked to forfeited breastfeeding for fear of picking up their babies. Now, I see why. It's frightening to touch his head. It feels soft and warm. Yet, he loves the breastfeeding, he spends hours at my nipple, not always eating, just fiddling and even playing.
Cole responds to my singing. It must soothe him and remind him that he will be OK, even if he can't see. I've been singing, "This little light of mine, I'm going to let it shine" over and over. I didn't want to sing his other favorite songs. I don't know why. I guess I thought it would kill the fun of them when we got home, but I started singing "Head, shoulders, knees, and toes" and "If you're happy and you know, it clap your hands" and I've been singing non-stop since. My voice is tired and hoarse. No more baby babbling and smiles from Cole, only a strange creaky noise.
The hospital handed out 4th of July hats in an effort to cheer up patients and parents. We have a tall Uncle Sam hat -- red, white, and blue, with stars circling it. We have a "firecracker head" hat, turban style with eyes, nose, and white hands covering ears and flames sprouting from the top. Many of the staff are wearing the hats. I appreciate the attempt at levity.
Cole can barely open both eyes. His left eye is puffier than the other, and his head is huge. He almost smiles. He forced a weak smile while I sang to him, and I wonder if he was trying to make me feel better. He likes to be held and walked. As we walk our floor, I glance into some of the rooms. One baby has about ten IVs attached to its tiny body. The screams and crying that come from the rooms are awful. More than once I've heard: "Mommy, oh, mommy, it hurts so bad. Please mommy. It hurts . . ."
Cole's morphine IV bruised and irritated his hand, so we pulled it out. I watched him writhing and screaming as they gave him a final dose and then yanked the needle from his tiny hand. I can't stand for them to jab another needle in him, so we're going to try Tylenol with Codeine, no more IV. I started to feel depressed again. I'm tired of seeing Cole in pain.
I'm wearing thin of the nurses and doctors. So many of them make rounds that it's hard to keep track. They argue about pain medications and poke and prod my son.
Another doctor just came by. She said Cole is healing well. Usually babies' eyes swell shut for two days, and their heads puff even larger. I asked the doctor if she's ever seen babies come through this operation without their eyes swelling shut. She said no, never.
Today, Cole goes home. We are waiting to be discharged. The nurses can't find a hat big enough for his head. He's fallen asleep. I woke up sad and have remained so. The worst is over. We made it. Shouldn't I feel relieved, and even jubilant?
I left the room when they ripped Cole's bandage off. Chris said it was horrible. They leave it off. His zigzag scar goes from ear to ear. Since hair never grows over scar, the zig zagging pattern encourages the hair to cover it. It reminds me of the seams on a baseball. The sutures are thick and clear and should dissolve on their own within a month. The doctor advised us the swelling will decrease over time. He said, "We've opened up his skull and remodeled it so that it will have a chance to grow normally. You'll be pleased with the results as time goes on. You don't know how he might've looked later in life had you done nothing."
Cole seems like my little baby boy again, only cranky as hell, understandably. He's immobilized. When I lay him down, he just stares. I can't imagine the discomfort.
Cole whines irritably, obviously in distress. When not cranky, he is resigned, stoic, and sad. He sits on his blanket with his two fingers in his mouth and stares forlornly. I am fatigued and sick with a fever. The hospital sent us home too early. His head began bleeding yesterday, so the doctor made us return to the hospital. Chris was at a job site, unavailable, so my friend Holly drove us. Dr. Wang re-stitched part of his head. In what seemed an afterthought, he decided to suction out fluid that was building. I left the room and paced the hall. I just couldn't handle any more pain. Holly stayed with Cole. I heard him screaming and crying. Once again, I felt powerless and numb. I was mad at myself for leaving him. The nurse who discharged us happened to see me. She asked why I was back. "Because you sent us home when his head was still bleeding, that's why," I said. I walked away, shaking, before she could respond.
Cole sat in my friend's lap, tears streaming down his red face, sucking his two fingers -- angry, tired, and sad. The doctor bandaged Cole's head with tons of gauze. He looks like he's wearing a giant turban. The doctor said it would help re-position the fluids. I wish he would wrap my head. Holly handed Cole to me, and I began nursing him. He didn't want to stop so I let him suck my nipple as we tried to find Holly's car in the huge parking structure. My back ached as I tried to nurse him and walk. We found the car and Holly drove us home. I stared at Cole in his car seat. Sad, sad eyes in such a little baby boy.
I feel like a bad mom because I want to run and hide. I'm tired of seeing him unhappy and in pain. I know he will be happy again, and we see moments when he's his old self. More and more. Yet, today I can't seem to help him. Even when I hold him he complains. I decided to give him more codeine. I wanted to make it through the day without it, but I can't watch him suffer.
Cole wears a hat in public. Red hair sprouts over the scar, but the scar is dramatic, inspiring gasps and questions from children too young and honest not to respond. A section of his head remains bald. My pediatrician said, "They must've pulled his hair follicles out when they ripped off the bandage." A friend commented that his head looks ". . . a bit Frankensteinish." Cole is oblivious. He smiles and laughs at himself in the mirror.
Cole's hat fell off at the park and a three-year-old boy stared solemnly and silently at the scar. I explained that Cole had an operation but was fine. The boy ran off. Seconds later he returned, clutching his mother's hand and pointing to Cole's head. She looked at me apologetically. "I'm sorry," she said, "he's very worried about your baby."
It's been five years since Cole's head surgery. Sometimes, Cole's red hair parts so that I can see the thick scar that criss-crosses his head; otherwise there are no visual reminders of his surgery.
Yet, there are things unseen. The way I feel towards Cole is difficult to describe, as if our love was seared together. He's the one (for good and for bad) that can read my mind. I know that I am capable of fighting for my sons. I'm stronger than I thought.
Recently at the park, a Guatemalan woman asked me about the scar. She said, "The angels came into him while his head was open." I don't know if I believe it, but the idea makes me feel better.
My younger son Ry fell from his bed one night when he was two years old and had to have stitches on his chin. I was with him as the nurses at the emergency room held him down while the doctor stitched. He clutched my hand and screamed and it reminded me of Cole's surgery.
The room started to spin, and I was having trouble breathing. One of the nurses yelled, "Mom going down! Mom going down!"
The next thing I knew, there was a wet towel on the back of my neck, and I was being instructed to put my head between my legs.
It doesn't end, whether it's stitches or watching my child be teased. My heart is constantly being ripped in directions unexpected despite both children, ultimately, doing fine.
Ry likes his scar. He points to it all the time. The other day, Cole complained that he didn't have a scar to show off like Ry.
I said, "Don't worry, honey. Remember, you have that big zig-zag scar that goes from ear to ear?"
"Oh, yeah," he said. "I guess I forgot."