Archive for the 'Our Eden' Category

Poor Dr. Button.

He confesses that Eden has actually kept him up nights. He talks to his wife — a pediatrician — about her at the dinner table. No one can quite figure out what is up with this kid.

We were supposed to wait until the 18th to see him again, but on the morning of the 10th I knew she wasn’t okay. She’d been up many nights crying. She was irritable.

And then she was hot. Really hot. 100.8 hot.

Having a sick child splits my personality in a funny way. I pass stark panic around my insides like a hot potato. The thought comes, I banish it and bounce to the next, the thought comes back and I bounce it on.

Babies die so fast of the damndest stuff, it still happens.

WHAT DO I MAKE FOR DINNER HOW ABOUT SOME NICE PORK CHOPS ANYONE UP FOR PORK CHOPS YES I THINK THAT’S WHAT I’LL MAKE SOME DELICIOUS PORK CHOPS.

Outside, none of this bouncing happens. I become calculating and fierce.

“You’re just awesome,” I tell Nurse Puffy Heart. She’s been our nurse since all of this began, looks like she’s about twelve, and startles me with extreme competence every time. We’re always happy when we get Puffy Heart.

“Really, you’re doing great, and if you don’t make it on the first pass, it’s no trouble, we’ll just try again.”

We were supposed to have a nurse from the hospital. She could catheter an infant as smoothly as most of us start a car. But she had a cold today and so Nurse Puffy Heart has to take her best stab at it.

Don’t say stab.

“Really,” I say to her in a conversational voice. “We’ve got lots of time, I have no place else to be. Take your time and if it doesn’t work we’ll take another shot.”

I’ve got to get as much pressure off Puffy Heart as possible, maximize her chances at making this clean on the first pass.

She had asked me whether I wanted to leave before the procedure started. Hot-potato voice said, The day you lay a hand on my kid without me in the room is the day you wake up with a cold bitch standing over your battered body. (Hot potato voice has a real potty mouth.)

Outside Voice said, “No, I’ll stay. In fact, why don’t you hand me a set of gloves and show me what I can do to be helpful?”

I hold Eden’s knee. I stroke her forehead. I look into her eyes.

“You’re doing great, Puffy Heart,” I say.

Jesus please don’t let her fuck up. Please don’t let her hurt my baby.

Eden screams. Urine everywhere.

“It’s all right,” I say to them both. “These things happen.” I never break eye contact with my daughter who is looking at me with betrayal and pain. I hold her leg unmoving and with the spare hand, clasp her tiny fist.

“I don’t think I got enough,” says Puffy Heart, examining the small sample container.

“Do we need to do it again?” I ask cheerfully. She pops out of the room to check. I stroke Eden’s forehead and sing to her.

“We need to do it again,” Puffy Heart says.

“That’s just fine,” I say.

Eden screams again. I hold her firm and look calmly into her eyes.

“We got it,” Puffy Heart says.

“Nice work,” I tell her, meaning it. “That’s really hard to do, particularly with Momma standing right there. You did great.”

She smiles.

We go to the lab for another blood draw. Eden’s 11th. They instruct me to place her on the table.

“We usually do it in the sling,” I say.

You try and take her out of there you’ll pull back a bloody stump.

“I don’t know how to do it that way,” she says, and the tension in the room has suddenly peaked. I smile.

“Oh, gosh, I’m so sorry. It’s a crazy request, isn’t it?”

While she’s laying out stuff a second tech comes in. We’ve had her at least four times. She has a newborn Eden’s age, she isn’t squeamish about my nursing right up to the moment of the shot and instantly afterward.

“Can you do it?” I whisper when the other lady steps out.

“That’s my supervisor,” she whispers back.

“Tell her I am a gigantic, neurotic crazy pain in the ass and for whatever reason I just like the way you do it and I’m nuts to deal with otherwise. Blame me.”

A minute later they’re back and Nice Tech takes the needle while Supervisor helps to hold the arm out.

The little tiny track-marked arm.

“Oh, you guys are the best,” I say. “I’m sorry I’m so nuts, really, I am, it’s totally irrational and you’re just terrific to help me out with it.”

Eden stays in the sling. I bounce her. They put the needle in her arm. She screams and I rub her back. As soon as it’s over we nurse and she is quiet.

“So what we’re looking for here,” Dr. Button says, “is a metabolic disorder. And that’s not something you want your kid to have.”

I nod.

“I will have the results tonight.”

“Okay.”

What the hell do I do between now and tonight.

I don’t even bother to pray. What’s left to say? I’ll do anything. My Creator knows that. I’ll beg. My Creator knows that, too. But lots of people would give up anything, lots of people beg. It happens anyway. It just does.

So I just ask that whatever happens I won’t be alone. She won’t be alone.

And then I make pork chops. And get the kids tubbed. And pass that hot potato around my guts at an even faster rate and resist the urge to pour myself a stiff drink because GOD DAMN this kid needs her mother sober.

The phone rings.

“Great news,” he says.

Oh my God.

There were no words for the desperation. And now there are none for the gratitude.

“Probably an infection,” he says. “Weight loss came with it. Liver function almost normal.”

Holy shit. Holy shit. Thank you God.

The fever finally breaks. We weigh her again. She’s back on the chart. By the skin of her narrow little bummy — she’s in the first percentile. But she’s back on the chart.

“Well,” Dr. Button says. “I consulted with Dr. Pedi and he says he’s never seen anything like it before, either. But it does seem better now. He agrees with me that it’s time to let her and you go on with your lives. We don’t need to see you again until a regular well-baby visit in two months.”

I kiss her and finally — finally — take her home.

I tuck her into bed beside me and watch Stewart and Colbert. I drink my lactation tea and marvel at her perfect, ethereal little face.

And then sleep hard. Really really hard. For the first time in four months.

Did such a small, anonymous little girl ever have so loyal a following?

Thank you all for your notes, your prayers, your good wishes. It does mean a lot.

Eden’s weight is climbing slowly. Her liver enzyme numbers are not radically changed. So the plan is to give it time. Let her weight come up, let her spend a summer in the sun with her sisters, with giggles and naps and snuggles, and see if that doesn’t make everything tons better. That’s my plan, anyway.

We will continue to weigh her, but unless she stops gaining again the little thing gets a break from needle sticks for a while. She’ll do a repeat blood panel at the end of the summer. Our hope is that it just needs more time to go down, and that it will be over and we will never quite know what it was.

I think I will experience a lot of dread the night before we stick her again, the night after when I wait for the results, the following day, waiting for the phone to ring. But I am glad for the respite between now and then.

Dr. Button has had to give me bad news twice — first, when he called to tell me I had tested positive for Lyme. Second, when he called to tell me there was a problem with Eden’s blood work.

I’ll let you off the hook — she’s okay. We’re pretty sure it’s over. But it was a long two weeks from that first phone call until today, when Eden is looking plumper and pinker and her blood work is almost back to normal.

The anomaly was high liver function. Paired with a baby that wasn’t gaining weight, it was pretty bad news.

I am always surprised when people speak of parenthood as a job of mindless banality. No meeting I ever had in professional life carried the stakes of Eden’s medical appointments. No professional relationships were ever more critical to me than those I maintain with her care providers.

Eden has a medical team, and her Dad and I are at the head of it. That is complicated work.

We start with an agreement not to ask Dr. Google, not to take this thing any faster than it needs to go. Dr. Button runs some additional tests and takes her off Zantac and puts her on Prilosec and I stop taking pain medication as an extra precaution. We agree to supplement with formula after every feeding.

He consults a couple of pediatricians, and refers us to Children’s Hospital to a GI specialist. And then we are instructed to sit tight. We need a week and a second blood panel.

This is an odd week. The bigs still have school and homework and the laundry continues to pile up. I still have papers to grade and– of course — a newborn to care for.

And at least four times a day this conversation:

“She’s beautiful! How old is she?”

“Six weeks.”

“Wow, what a peanut!” (Never, “Petite” or “delicate” or any other word. Always always with the peanuts.) “How much does she weigh?”

“Eight pounds, three ounces,” I answer, bracing for the next question like a bad actor telegraphing a coming slap.

“WOW! What did she weigh when she was born?”

“Eight pounds, four,” I reply in a tone the smart ones take to be the end of the conversation.

As long as I live I will never ever ever again question a mother about her newborn. I’ll tell her the baby is beautiful, congratulate her, shut my mouth.

And then the week has passed, the second blood panel is in, and Cute Husband and I are sitting in a little cement cell of a room with colorful animal cut outs on the walls. The only sound is Eden sucking on her pacifier.

I have one ear bud from Sunbeam’s iPod in my ear.

“Who are these people?” I say of the music pouring out. “And why are they screaming?”

Cute Husband is adorable — the picture of a Dad. He has come from work in his suit with the silver-blue tie that sets off his eyes behind his glasses.

The specialist walks in, sits on the little stool, and flips through the pages that contain the record of Eden’s small life: 19 weigh-ins, 7 blood-draws, an ultrasound and a partridge in a pear tree.

“I can see why Dr. Button was concerned,” she says, frowning at the paper. She looks up and fixes her eyes on Eden. And here it comes, the thing that makes me crazy and saves my sanity all at once, every freaking time. “Wow, she really doesn’t look sick, does she?”

Eden coos and almost-smiles and lifts her head up in baby-wonder.

“With these numbers I would really expect a much sicker-looking baby,” she mutters, going back to the papers. “I wonder what her thyroid was?”

“It was normal,” I say. “He ran it on the 26th.”

“Oh, yes, here it is. This chart is different from the one I am used to looking at. Now I am wondering about glucose?”

“That’s in there, too.”

“What was her discharge weight?” she asks.

“7 pounds, 11,” I say. “She was 8 pounds, 4 at birth and went down to 7 pounds 3 at week two. She was back up to 8 pounds, 3 last week — week five — and today measured 8 pounds, 4. She was 20 inches at birth and measured 21 1/2 here in your office.”

I, who can’t add and subtract, who easily forgets quantities and dates and can’t be trusted to reliably double a recipe: I have these numbers and I know they’re right.

She is reading a constellation of chemistry and physiology I can’t even see. I am reading the wrinkle of her lip, the uncomfortable squirm of her toes poking out of the peep-toe flats. I know she thinks something is wrong.

Here in a cement honeycomb of a building, with similar conferences going on above and below us and to the sides, with children living and dying, we three are trying to communicate. Cute Husband and I hold weeks worth of evidence that might be helpful. She holds a headful of possible diagnoses. We’re trying to trade, and it’s harder than it looks.

Together, we paint a picture of what’s happening to this child, and pictures are always as much art as science.

“Biliary atresia,” she says, “is a condition where the valves connecting the liver and gall bladder don’t work properly.”

She tells us more — about tests and lab work and surgical fixes. I have learned that doctors only tell you what you need to know. What you can stand to know is up to you, and is a matter of asking questions.

Cute Husband and I ask about the tests, the chemicals, crack a few lame jokes. Neither of us asks about prognosis.

She tells us she will call when she can get us an appointment for the test in the nuclear medicine department. The surgical fix’s chances are best the sooner it’s done.

We decide to call it “Billikerficklegruben” and ask anyone who knows anything about it not to tell us.

But that night I Google, and I sleep badly, and want to be back in the life where bills and laundry are my worst nightmares.

And then something wonderful — good weather. An anniversary weekend. A second opinion, another blood panel.

Eden is looking better. She’s looking lots better. The numbers no longer support Billikerficklegruben. And it can’t be Cystic Fibrosis or Hepatitis, either. We play mini-golf and make cod and kiss in the rainbow and the next day we see Dr. Button again.

She has gained five ounces in four days and hasn’t cried uncontrollably or thrown up in over a week.

“Maybe she never had reflux,” Dr. Button says. “An inflamed liver could have made her cry and throw up. So she’s naturally slow to gain anyway, like her sisters, and then picks up this odd virus somewhere.”

“If her immune system were working overdrive, it would burn more calories,” the specialist adds. “And make weight gain even harder.”

Sounds good to us.

One more blood draw and we wait.

Dr. Button and I have a routine.

After years of seeing each other once or twice a year for checkups and chest colds, we have seen each other approximately 19 times in four weeks.

So here’s the routine: the nurse weighs Eden and logs the information into the computer, and then leaves me in the exam room to wait for Dr. Button. Dr. Button finishes with his previous patient and then swings by his desk to log in to Eden’s chart. Then he comes into the exam room grim-faced to deliver the news that I have a very sick infant.

But when he opens the door and makes eye contact, I smile. Because I am not worried. Because the baby I am holding is not sick. I am her mother and I know she’s okay, she’s just small is all.

And then we talk and he watches her closely and then he examines her and scratches his head and agrees that she sure doesn’t look sick.

She looks fantastic. Great color, alert, responsive.

And then we talk and I say that I want to ride it out, I think her weight will resolve. He agrees that it’s no fun to send a newborn for tests if they don’t need to happen. We decide to do nothing, to visit again in a few days, to get aggressive if she’s not radically better then.

This is what we do. This is what we have done for four weeks.

But this time the routine changes. When he knocks on the door and we make eye contact I don’t smile. I try not to cry.

“Yeah,” he nods. I pop the iPod ear buds out. I have spent the last twenty minutes listening to music, fighting guilt and panic.

I was just too clever. I had to get cute. I really believed I was smarter than Big Medicine and that I could just keep her home and avoid tests I knew she didn’t need. I have allowed the child to get really sick.

“So it’s time to start getting aggressive,” Dr. Button says.

“Yes,” I nod.

“A ten-ounce loss in four days is pretty serious.”

“Whatever you want to do,” I say. “You tell me what needs to happen and I’ll do it.”

“I know,” he says. But it’s my only contribution and I have to make it — No more resistance. I’ll give her formula, I’ll make her sleep in a crib, I’ll wear a freaking bunny suit and run through the streets. Just tell me what to do.

He tells me the next steps — to Boston Children’s to a GI specialist. Blood work. Urine tap.

I nod.

He puts her on the table and looks at her. She gazes up at him with curious blue eyes.

“She just looks so good,” he says. “She’s crying after every feed?”

“Yes,” I say. “Like she’s in terrible pain. All night long, too.”

He smooshes her belly, feels around in there.

“It doesn’t seem to make her uncomfortable,” he says.

“It makes me wildly uncomfortable, does that count?” I ask. While he runs his own checklist of things to look for, I am running mine. I need coverage for the Bigs. Mare has piano. Doodley needs a snack. What do we have in the fridge for someone to feed them? Who can I call? I should get an overnight bag for Edeny and me. I need the iPod and cell phone charger and better shoes.

“Okay,” Dr. Button says. “I’m going to go make some phone calls and get this started. Before we do that, let’s just weigh her again to be sure.”

He brings in the scale and I set her on it and turn away. I can’t stand to look.

“Elizabeth,” he taps my arm. “Look.” He’s laughing.

Holy God — Eden’s not down ten ounces. She’s up two.

(Why did I put you through that? Because I had to live through it, why the hell should you be spared?)

I have completely lost my composure and am repeating “Holy shit” multiple times. We’re both trying to breathe again.

“Okay, well, yeah, that’s different,” he says.

I hug Edeny and she looks all happy that I’m happy.

“I still think we should move forward with tests,” Dr. Button says.

“Oh, sure, whatever you want,” I say with a generous wave of my hand.

The day is still hard.

I have always thought that a person is who she is when she is born. Even if her lifetime will radically impact how she functions in the world, she is a complete person at birth.

When you have a sick or unhappy child, you get an insight into her character.

I nurse Eden until they have the tray prepped, everyone gloved and ready to go. Then I trade out for the pacifier, hold her close, take her hand. When the needle goes into her arm, she wimpers. There are people holding each of her limbs and she resists for only a second before closing her eyes, sucking furiously on the pacifier, squeezing my hand.

One nurse digs around that tiny arm with a needle, another squeezes blood out to fill the vials. Eden keeps sucking, eyes closed, gripping my fingers.

“She’s so good!” the nurse said.

“Hey … is she asleep?” the other nurse asks.

“I think she is,” I say. Edeny has decided she does not like her current circumstance and will just sleep through it.

At the ultrasound, she fusses only briefly on the table before passing out. I check her breathing, but no, she really is just completely asleep. It’s very odd that we are ultraounding her and it’s not going through me. Her name is on the little screen and the transducer comes down and is revealing her stomach, which to me looks like a petri dish swimming with tadpoles and meteors. To the doctor it looks like an organ that is processing food appropriately, so that’s good.

Dr. Button calls me at home late that night to tell me that the tests have come back normal. Of course.

So we’ll go for another weigh-in in a couple of days. Next time, I think I’ll dress her in the bunny suit. Just to mix things up.

Because someone has to wear a bunny suit before this is all over.