Monthly Archives: March 2015


Big News

Monumental news, everyone. This weekend, Malcolm learned to roll over onto his stomach and move both of his arms in front of his body by himself. Call the mayor and break out the ticker tape for a city-wide parade. MALCOLM ROLLED OVER BY HIMSELF.

Okay, I know this sounds pretty mundane, especially for a seven-month-old who should have been rolling independantly for months already. But it was a big deal for him. And a big deal to me. Why? Why am I celebrating the achievement of a very common, fairly basic infant milestone, you ask?

A little over a year ago, on April 16th, 2014, Dustin and I went in to the obstetrician’s office to have a routine, 20-week ultrasound. We were extremely excited to see our baby moving around and even more excited to find out its gender. We didn’t much care whether it was a boy or a girl, but either way we really wanted to know. There were crib sheets to be bought and clothes to collect and blankets to be crocheted, and we didn’t want to mess around with boring neutral colors any more (besides, white clothes are incredibly impractical and – I cannot state this strongly enough – nobody looks good or has ever looked good in pale yellow).

We arrived at the clinic and settled in for the ultrasound, my bladder full to bursting, both our stomachs full of butterflies. The sonographer messed around, taking what seemed to me a lot of unnecessary pictures of toes and fingers and brain lobes and kidneys before she got around to the genitals and revealed that IT WAS A BOY! I had been pretty certain it was a girl, so of course I was shocked and happy and disappointed that I wouldn’t be able to use Penelope’s old clothes and generally overwhelmed and pleased as punch.

The rest of the ultrasound seemed unimportant and anticlimactic. I desperately wanted it to be over, so we could go call our parents and tell them the great news. But the tech continued to take a tiresome amount of pictures, especially of the baby’s heart. She stopped making casual chit-chat. “I can’t get a good enough angle,” she kept saying, and I was too polite to say “I don’t care what angle you get, just hurry it up lady, because I have to pee and I’ve got people to call.” She kept trying for what seemed like hours, frowning in concentration. And after an eternity of bladder discomfort, she finally let us go out into the waiting room.

The nurse called us back after a few minutes of waiting, and my doctor met us in the hallway, which was weird, because usually I would have to pee on a stick and get weighed and have my blood pressure checked before seeing the actual doc. He sat us down, with no preliminary small talk or pleasantries, and cut to the chase. “There may be something wrong with the baby’s heart,” he said, “I don’t know how serious it is, but I need you to go up to Portland to see a perinatologist and have further studies done. Right now.”

The smile melted off my face. I met Dustin’s eyes briefly. They looked shocked. Concerned. Scared. I managed to look at the doctor again. “Is he going to live?”

He shook his head. “I don’t know,” he said. “I hope so.” And then he stood up and ushered us out of the room and gave us a map to a hospital in the city. The last thing he said was “Go now. They’re waiting for you.”

I held it together until we got into the elevator, and then the tears started flowing. Dustin was brave, trying hard to be supportive.

“He said there may be something wrong with the baby’s heart. It might be nothing. Or it might be something that doesn’t even need to be fixed. We don’t know anything yet. Don’t lose hope.”

The rest of the drive we sat quietly, stunned into silence. We arrived at the hospital and were ushered in to yet another dark ultrasound room. And for the second time that day, my stomach was covered with cold, gelatinous muck and for the second time that day, we saw our baby up on a screen, moving around, sucking his toes.

The sonographer poked around for ages, taking various pictures of Malcolm’s heart. Hundreds of them. She was being very cheerful and normal, which I appreciated tremendously, and she managed to remain cheerful even when eventually calling in for reinforcements. Then there were two sonographers, pushing and prodding me, talking quickly in low tones, using words I didn’t understand. And then the second tech left to call in for even more reinforcements. While she was gone, I worked up my courage and spoke to the first girl. “My obstetrician just said there might be something wrong with the baby’s heart. Is there actually something wrong?”

“Oh, yeah,” she said, somehow still cheerfully. “There is definitely something very wrong here.”

My heart did a flip and then seemed to painfully fill my chest. “Is it really bad?”

She stopped what she was doing and shot me a kind look. “It’s complex,” she said firmly, and left it at that.

Soon, the perinatologist finally came in to talk to us. She told us what we already knew: that there was something very wrong with Malcolm’s heart. She explained that the defects were well above her paygrade, and that they would be calling in a pediatric cardiologist the next day to weigh in on the situation. I asked her if the defects were compatible with life, the question I had been dreading all afternoon.

“I don’t know,” she said, and grabbed my hand. “You…you need to prepare yourself for the possibility that the baby might die soon, or shortly after birth. I am obliged to tell you that you are still legally eligible for an abortion at this point in your pregnancy, and you will need to consider that option.” She rose to leave, and then stopped herself, choosing her words carefully. “All the rest of your baby’s organs are perfectly formed and completely normal.” She smiled. “That is a very encouraging sign. Let’s just see what the cardiologist has to say tomorrow. Get some rest.”

Dustin and I staggered out of the hospital and found our way into the parking garage. We sat, holding each other tight, huddled together in our stiflingly hot Jeep, sobbing uncontrollably. The only thing I could think was he doesn’t know he’s dying. Oh God, he doesn’t know he’s dying. He thinks he’s safe, that his mommy is taking care of things. He doesn’t know…

The next twenty-four hours comprised a true dark night of the soul. After a few hours of fitful sleep, I awoke at three in the morning, crying my heart out. I couldn’t see how things could turn out okay. Even if he could be fixed….even if he could live outside the womb…what would become of him? Would he be a sickly child and eventually pass away at age 10, or 16, or 20? Would he slowly fade away, waiting hopelessly for a transplant that never came? Or would I be forced to carry him to term, give birth, and hold him as his life ebbed away over a period of hours or minutes? What do you do with babies that die, I wondered. Should we cremate him, or bury him? Do you give a memorial service for a baby that only lived a few hours? My brain turned over and over, exploring each horrible possibility. Dustin held me tight. “It could still be okay. It might still be okay.”

“How?” I asked, bitterly.

“It could still be okay,” he said again. “Somehow, we’ll make it through.”

We returned to the hospital the next morning and sat wordlessly in the waiting room, hands clasped together. We were ushered back to the same dark room, where I was plied with the same sticky gel. The cardiologist – an odd little man – came in quietly and began to look at the images of Malcolm’s heart. For an hour, or more, there were whispered conferences between the specialist and the technician. They took recordings of the baby’s heart rhythms. They took three dimensional pictures of his heart from every angle. They used a special technology to watch the direction of blood flow from one chamber to another. And then the doctor turned off the machines and meditatively washed his hands. He walked over to my bed and began talking rapidly.

“So there will be three surgeries. The first one about six weeks after he’s born, and the second three or four months afterwards. The third will be when he’s three or four years old.”

“Wait,” we said, confused. “You’re saying he’s going to live?”

“Oh yes, of course,” he said, and continued, apologetically, “Now, he’ll be able to run and play and participate in gym at school, but I must warn you that he’ll never be able to compete in sports at a professional level.”

Sweeter words were never spoken. I processed them slowly. My son…would be taking…gym classes…? Gym classes. Because…because…he was going to grow up.

The rest of the appointment passed by in a blur. He was going to grow up. My baby was going to grow up. He would get his chance at life, just like all the other kids. It would all be very hard, of course, but HE WAS GOING TO LIVE!!!

The last year has been harder than anything I could have imagined. Four surgeries. Multiple hospital stays. Feeding issues, weight issues, vomiting issues. No sleep, no money, no time. But believe me when I say that nothing in my life will ever be as bad as that night when I thought my baby was going to die without a chance or a say in what happened to him. So when I say that this weekend he rolled over by himself, oblivious of his multiple scars and weird feeding tube, and freed both of his arms and grinned like the little maniac he is, I am talking about a major miracle. He may be a bit behind the other babies in things like sitting up and rolling and crawling, and he may be a bit beaten up and worse for wear, and we may be on first name terms with all of the doctors and nurses at the pediatric ER, but this little guy is growing up.

Go get ‘em, buddy.



It’s No Problem…

I have a problem.

I understand that this is not as exciting to hear as “I have a dream,” or “I have an unlimited number of free passes to the Blazer game” or even “I have an old bag of Pop Rocks in my purse,” so please try to check your disappointment and bear with me. My problem is as follows: at some point when cultivating a new friend (or reacquainting myself with an old one), I have to mention Malcolm’s whole…situation. I don’t mind saying that I have begun to heartily dislike the process. Not because I don’t want to talk about it, mind you. I have no issue discussing the matter. My dislike stems from the inevitable ‘frozen look of horror’ that I receive. For those of you who have never been on the receiving end of one of these beauties, imagine the ‘frozen look of horror’ as a startled, panicky grimace mixed with a hearty dose of pity and just a dash of embarrassment. It is invariably accompanied with a mumbled “I’m so sorry.” And sometimes even an occasional tear.

I totally understand that this is a natural reaction to hearing that a six-month-old baby has already had four surgeries, been cut open in 12 different places, and spent a quarter of his life in the hospital. I get that, I really do. It is utterly horrifying, when you think about it that way. But you know what? I DON’T THINK ABOUT IT THAT WAY. This is my normal, everyday life now, and to me it is normal and everyday. Frankly, I’m pretty sure that Malcolm and Penelope are going to grow up thinking it’s weird that every little baby boy doesn’t have a cute little (okay, huge) zipper scar on their chest.

My point is, I don’t want people to feel bad for me because I don’t feel bad for myself and – more importantly – I don’t feel bad for Malcolm. Receiving pity and concern just makes me feel kind of squirmy and weird. And guilty. I always start thinking about families that are actually suffering. Families that are literally starving to death, or which have lost multiple children or are raising children who will never reach adulthood. I feel bad for those families, and if I’m ever in their shoes, you better believe I’d consider feeling bad for myself. Similarly, if I got caught in a zombie apocalypse, I would have no qualms about indulging in a few existential ‘why me?’ sob fests. But for now, I’m doing just fine. Mal is going to be okay eventually. He’s a lover and a fighter.

I recently joined a support group for families of children with congenital heart defects, and I learned two very interesting things in the process. Number one: sharing a physiological defect with someone does not mean that you have anything else in common with that person or their families. And two: my family doesn’t need a special support group because we are already pretty darn supported. Really! Dustin and I have four able-bodied parents who have put their lives on hold to help out with childcare. I have several amazing girlfriends who will listen to me whine whenever I feel the urge. Malcolm’s got a plethora of surgeons, doctors, dieticians, and other specialists who are just a phone call away. We’ve received financial assistance from the state of Oregon, from the hospital, from fund raisers and even from complete strangers. So, you know something? We’ve got it easy. Sure our life is hard sometimes, but everyone’s life is hard, sometimes.  Someone has to clean the toilets at the airport. Someone has to handle the tarantulas at the zoo. And Kanye West actually has to get up every morning  and continue to be Kanye West. Food for thought.

So by now you might be asking yourself “What is the overall purpose of this blog? Why did I just read through this amazingly well-written rant? What can I take away from the experience?”

It’s simple. Primarily, I want to say “thank you” to everyone who has supported me into my current state of normalcy. Thanks to everyone who has brought a meal, or dropped by, or taken me out for a sanity-preserving coffee date, or prayed for Malcolm (and for Dustin and Pen and I). And perhaps more to the point, I want people to feel free to inquire after Malcolm (or me) any time they want. Please don’t feel bad for us. Or if you do, don’t put on an awkward, sad, frozen-fish face, because that makes me feel bad! If you’re curious, ask me questions. Seriously, ask me. Talk to me. Laugh with me. Bemoan the high cost of milk with me, if you want. You don’t even have to use a hushed tone, I promise.

In short, let’s just agree to leave all the pitying to trained professionals, like Mr. T.