Langer Loksh

Decisions, Decisions

Our drive down went very smoothly, but Charlie spiked a fever when we arrived. I called Dr. J. and he said it was OK, as long as the fever responded to Tylenol (which it did) and eased up by morning (which it did). Otherwise I'd have to take Charlie to the emergency room for IV antibiotics (which I didn't).

The reason we're here is for Bobby's unveiling--the traditional Jewish graveside remembrance of someone one year after his or her death. I think it's a good custom because one year later, everyone is kind of at peace with things, and it's nice to get together with family and remember the person without it feeling so raw like right when it happened. Summer put a little rock on the grave. Ellen left Hershey's kisses and a dog biscuit from her dog Riley.

Afterwards we gathered at Bobby's mom's house for Sloppy Joes. Have I ever blogged about Sloppy Joes? In a specific area of New Jersey with South Orange at its epicenter, one can find a sandwich called a Sloppy Joe that is not a "Manwich" type sandwich at all. It is three layers of rye bread stuffed usually with multiple meats like corned beef and turkey, plus cole slaw and Russian dressing--a food peculiarity so beloved that my hometown deli ships them nationwide.

Bobby's brother-in-law Kenny was there, as I knew he would be. "Kenny" makes him sound like a pizza delivery guy; in fact he is the chairman of the department of otolaryngology at Boston Medical Center. I told him about Charlie's ear bulge and he took a quick look. At Charlie's age, Kenny said, a sebaceous cyst would be really unusual. He thinks it's the infected tissue/track thing, and recommended getting a CT scan sooner than later, because it's easier to tell what these things are when they're big, instead of shrunken down. So while I've been hoping for the bulge to shrivel, in fact, it may be more helpful if it stays bulgey. Also, he said he wished pediatricians didn't drain these things. "We tell them it's easier for us if they just don't touch them."

Kenny is extremely kind and reassuring, but I couldn't help feeling as if I'd made all the wrong decisions at the end of the week. When Charlie's whole body was hot with fever, I wished I'd had him admitted to Children's on Thursday. When Kenny said the pediatrician shouldn't have drained it, I wished I'd gone straight to the ear doctor. I'm sure everyone in my online microtia discussion group would say that no one should touch Charlie's ear but his ear doctor. That's the worst part for me--feeling like I should have known better.

Jeff was working out of town all week; he told me he'd have made all the same decisions I did. And Kenny said he'll email our ear doctor, a good friend of his, and urge her to get Charlie in for his scan ASAP. Everything is OK; no harm has been done. I just wanted to write about this because I'm sure every parent out there who has ever had to make a medical decision for his or her kid can relate. There seems to be no right answer, and it seems strange to be in charge of decisions that I've had no training for. Different doctors have different opinions, and sometimes, it's just baffling--particularly for me. I can sit on my bed in my bathrobe and stare at my dresser drawers all morning long because I can't decide what to wear. Charlie's medical mysteries are just one more way that I know that he was sent to me to whip me into shape.

To Leave You with a Better Mental Picture

Here are Jeff's paternal grandparents, Kathleen and Francis, on their 65th wedding anniversary last Sunday.

I'm Fairly Confident

that it's the same, or even slightly better. A few minutes ago I heard cute singing noises coming from Charlie's room. I went in and he greeted me with his morning "nah one!" which means "another one," which means, "Look at me, I am so lucky, I have two pacis." I picked him up and raised the blackout shade. In the nice clear sunlight, the bulge looked perhaps a tiny bit smaller, perhaps a tiny bit less red. No hospital for us today. (Thank you, Jen, for the early morning consult.)

Like I Said, An Affront to the Mushroom

We saw the ear doctor in Boston this afternoon. Her exam room had a whole wall of windows and Charlie was thrilled to look out at the passing trucks, buses, ambulances, and taxis. She said the bulge is either a sebaceous cyst, which is common and which would have nothing to do with his little ear being formed differently, or it is some kind of inflamed piece of tissue or "track" that does have to do with his anomaly. "We treat those two things two different ways," she said, "and we won't know what it is unless we do a CT scan."

I was going to ask for a CT scan after Charlie turns two anyway, because that's the only way we'll find out if he's a candidate for the surgery that can open up his ear canal and restore his hearing in his little ear. I doubt he will be a candidate, because his facial nerve is probably in the wrong place, but it's worth finding out where we're at.

The next available non-emergency appointment for a scan is April 11. The doc put Charlie in for that and said she'd put him on the cancellation list and try to get him in earlier. 

Here are the choices we discussed:

1. Go right now to the emergency room and wait six hours for Charlie's stomach to empty out and then get a CT scan. Not a good option. First of all, it wasn't really an emergency. Second, all I had was a little backpack with a couple of diapers and no toys. And I had to pick up Summer at school.

2. Have Charlie admitted to the hospital, where he'd have IV antibiotics and spend the night, and then get a CT scan in the morning. Again, not so great. There's really no point in sleeping at the hospital. Unless she really felt he need the IV antibiotics, which she didn't.

3. Bring Charlie home. Look at the bulge in the morning. If it's the same or better, go about my business--which happens to be driving to New Jersey for the weekend. If it's worse, call the doctor and she will admit him to the hospital, give him IV antibiotics, and have the scan done. I would just have to not feed him breakfast, which feels cruel to me, but I did it when he had to be sedated for a hearing test when he was a baby and it was easier than I'd feared, probably because he is the most agreeable child in southern New England. I carried him around Beacon Hill and pointed out the pretty trees and pretty houses and he was just sweet and quiet and lovely as could be. There was a painter or carpenter type guy smoking a cigarette and it was all I could do not to beg him for a smoke. 

Door number three, Monty! I have to decide tomorrow a.m. if the bulge looks the same, or better, or worse. Here's a picture to help me remember what it looked like today. (I know, ew.)

Circle of Smiles: Is That a Sebaceous Cyst or Are You Just Happy to See Me?

I'll Spare You the Photo

A week ago I noticed that Charlie's little ear was more red than usual. By Friday it was purple and I took him to Dr. J., who said it was a sebaceous cyst and put Charlie on antibiotics. By yesterday it was a horrific bulging thing, an affront to the mushroom, really, so I took Charlie back to Dr. J., who said he would poke the bulge with a sharp sharp scalpel.

"We haven't decided what kind of new ear to get Charlie yet," I told Dr. J., "and the ribgraft guy doesn't want any scar tissue at all." Dr. J. assured me that he would make only the tiniest of pinpricks and would leave no scar tissue.

Charlie cried, of course, and I squeezed his arms tight to his body. Dr. J. told me to put neosporin on it a bunch of times every day and that warm compresses would help. He told me to call Charlie's ear doctor and let her know what was going on.   

The bulge filled up again almost right away. I left a message for the ear doctor. My friend Jen, a doctor in New York, advised me to have a plastic surgeon drain the bulge. I talked to the nice lady at Dr. Brent's office, who wanted me to fax Dr. J.'s notes to California. I got kind of panicky and called Dr. J. He said to squeeze the bulge, which I totally did not want to do, at least not until Jeff got home.

Then the ear doctor, Dr. Kenna, called me back and said to bring Charlie to Boston tomorrow so she could take a look. Could we come at 12:20? I'm supposed to be at work then. How about 3:30? Who'd take care of Summer? I'd been making and moving doctor and dentist appointments for Summer, Charlie, and myself for days, filling up the calendar squares in March, April, and May. The ear bulge just ate up three more calendar squares and got even bigger. 

These calls took place on my cell phone at the playground, where I ran into Sarah and started crying from frustration as soon as I saw her. Because it had been, you know, a whole day since I last burst into tears. "What would I do if something that actually mattered was happening?" I whined, thinking about the major decision we're going to have to make about Charlie's ear. "You'd be fine, because it would matter," she said. Someday, I guess, we'll see if she's right.

The Perfect Post

A couple of hours after Beatrice was born I brought Summer and Charlie to the hospital, the same hospital where Summer was born and where Charlie was born and then stayed for 10 days. I was so excited, as you could probably tell from my posts that day. As we sprinted into the lobby, I was hit with a wall of post-traumatic-Charlie stress, and almost started to cry. It's been a long time since I felt that swirling, sinking feeling. I suppose if it's going to happen, it makes sense that it happened at the hospital. The feeling passed immediately. We charged around the corner and up the elevator and breathlessly informed the maternity floor receptionist that we were there to meet our new baby cousin.

Friends and family had gathered to meet the new baby. My children and I were entranced. Beatrice was beautiful--not like my floppy-necked newborns, who looked for all the world like featherless open-mouthed baby birds. (Only later do they grow in to the exceptionally attractive specimens you see today.) Beatrice was pink and round-cheeked. She was alert, but also very calm and quiet, unlike her feisty big sister. We loved her right away, and we were so happy to be there and share our now-traditional Thai food dinner on styrofoam hospital plates with hospital ginger ale and champagne brought in from the outside.

So my guard was down when I heard it. "She's perfect," someone said. "Just perfect!" agreed someone else. "Look at her, she's absolutely perfect." My smile, and my heart, froze.

There is only one thing people mean when they say that a baby is perfect. They mean that the baby has 10 fingers and 10 toes and two regular ears and two working facial nerves, right? They don't mean it in any "beautiful on the inside" bullshit kind of way. And while I am filled with happiness for our family on the occasion of the birth of this wonderful new baby girl, and while I absolutely know that, as Summer would say, this is "not about you, Mommy," at that moment a steel door slammed down an inch from my face. There's a big metal door and Jeff and I are on one side of it and everyone else is on the other side.

Charlie has changed me. It's not that Charlie isn't perfect. It's that Charlie has emptied that word of meaning. Like "family values," or "Yugoslavia." Being in our Early Intervention group has made me intuitively aware of what to say and what not to say--and always aware of who is in the room. Including one little girl with 11 fingers. Though come to think of it, I don't think I was throwing "perfect" around pre-Charlie anyway.

The next day Maya told me that Beatrice did not pass her newborn hearing screen in one ear. Interesting, I thought. I thought about how perfect looking people might not be perfect. I told Maya that if Beatrice needed to be followed for hearing loss, she should take her to Children's. I thought about all the stuff I knew that I could tell her, the ground I had covered, the hassles I could save her. I thought about how Beatrice would be in our Early Intervention group.

On Saturday night we went up to Andy and Michelle's to celebrate Andy's birthday. Their neighbors Julie and Ray joined us for dinner. Charlie's anomalies came up in conversation only because he has sprouted a sebaceous cyst on his little ear and I forgot to bring the antibiotics with us to New Hampshire. Julie and Ray then looked at Charlie. "Our son was born with a hemangioma on his face. He's been through five surgeries," said Ray. "Do you go to Dr. Mulliken?" said Julie. "He is incredible. No bedside manner, but his work is incredible." Ray asked me, "Is he still at it?" I said "Yes, but he's got to be pushing 70." Julie said "I think he looks older than he is because of the work he does. It ages him."

While Summer told Julie all about how she was going to celebrate her birthday in Mexico "for a change," and Charlie deftly protected his crackers from Kodak the black and white dog, Ray showed me four wallet-sized photos of his son Brett. In the first, the boy is 18 months old. The bumpy red hemangioma, which started out tiny, had taken over his entire cheek and pushed his eye socket up into his forehead. "Some crazy people chased us out of the grocery store," he remembers. Over the years, Dr. Mulliken cut into Brett's face through his cheek, his eye, his mouth. In the last picture, Brett is a high school junior, six feet tall, a football player, sandy haired, super-hero handsome, perfect smile, with two evenly placed eyes and a slightly scarred cheek. "Junior high was hard, but you'd never know it now," Julie says. "He doesn't have any problem with confidence. He just got waitlisted at Bentley--that was his first choice--so he was like, 'Fuck them, they don't want me? I'm going to Bryant.'" Ray added, "I don't mess with him anymore."

Tonight we visited Greg and Maya at home. Maya told me that both of Bea's ears passed when they retested her. As I held sweet baby Bea I felt so happy--happy for Greg and Maya, and happy for myself because I felt nothing but happy as my daughter stuffed herself with Oreos and my son cooked pretend eggs on the play kitchen stove. Charlie has taken the meaning out of "perfect." On the other hand he's taken "happy" to a new dimension.

Beautiful. Calm. Warm. Soft hair. Tiny eyelids. Funny little newborn smiles. Wrinkly hands and feet (with ten fingers and ten toes). Yes. All of these things. But not perfect. Perfect isn't good enough for Beatrice.   

Twist and Shout

Before I go put my children to bed and then sit down to write an overwrought post about the birth of my beautiful new niece, I just want to say, damn it Heather Mills, you can MOVE, girl! I have never been a fan of the ex-LadyMcCartney, but she just totally rocked the mambo on Dancing with the Stars. Advantage: Heather.

Saturday Morning Wrestling

Jeff: Charlie, stop hitting your sister.

Summer: He was not hitting me. He was high-fiving my butt.

Introducing

Beatrice Claire!