Tuesday, September 15, 2009

A boy and his kidney

Thanks everyone for your positive thoughts prior to Max's ultrasound yesterday. Some of you know the story of Max's kidney, some of you don't, but either way it's a story worth telling again, if only to put things in perspective.

It starts, of course, with the infertility. Years and years of it. And finally, the positive pregnancy test. And then, the ultrasounds began. When you are undergoing fertility treatments, you get a lot of ultrasounds - and this pregnancy was no exception. Max was photographed for the first time when he most closely resembled a fried egg. Then there was the flashing heart beat a week later. And then, a few weeks later, the shrimp with legs (think: creature that comes out Sigourney Weaver's stomach in "Alien"). And all along, everything was going great. I felt like shit, which apparently was a good thing. So with everything on track, the ultrasounds dwindled, and I went for several months without a new photo for the baby album.

And then we went in for the Big Ultrasound. The fun one, where you find out if you are having a boy or a girl. We invited my mom along. The mood was celebratory. Spirits were high. Anticipation filled the air.

And we got the answer right away - Boy oh boy, was it a boy. I know every parent jokes about it, but HOLY CRAP there was no question what we had going on in there. They measured it. They tagged it. They labeled it. We all giggled, Sami pounded his chest, my mother gushed, I realized that I needed to re-think the nursery.

And during all of our excited chatter, we hadn't noticed how.....quiet the tech was. Until we noticed that she was still looking. Peering at the screen, punching buttons, twisting dials. Photographing. Measuring. Labeling. And then she left the room and said she would be right back.

She returned with backup. Serious looking white coats, stethescopes, clipboards, concerned looks, sideways glances.

Hallmark signs of "A Problem".

I froze. Sami looked concerned. My mother looked distraught. The doctor who turned to us looked grim.

"Did you have the triple screen test ?"

"No, why ?"

"May I ask why you didn't have the test ?"

"Because there are so many false positives, I opted for this ultrasound instead."

"I see."

"WHY ? What's wrong ? What's going on ?"

"Well, we are seeing an abnormality. One of his kidneys is very large, and does not have the typical structure of a kidney."

There was more information given, some back and forth, and the doctors left, one of them heading off to find the genetic counselor. The ultrasound tech scurried out, avoiding eye contact. And I lay there, in shock, I think. Then I looked over at my mother, who was crying. And all I could say was:

"Something is wrong with my baby."

There were many, many tests. Ultrasounds, interviews with specialists, we chose a local hospital with a NICU for the birth, that was associated with the children's hospital we had selected for our son's care. And we prepared ourselves.

When Max was born, he peed right away, which meant that at least one kidney was working. So we dialed down the drama, and just focused on adjusting to life with a newborn.

We couldn't just forget about it, though. The specialist we had chosen put Max on a daily dose of antibiotics to prevent a kidney infection while they decided what to do, and they ran more tests. The tests were invasive, painful, and extremely traumatizing for us as parents. Max, thankfully, will never remember them.

The test results weren't good.

One kidney was not actually a kidney at all. It was a large fluid-filled mass. And it needed to come out. The other kidney was functioning, but it's connection to the bladder was not, and he was at increased risk of serious infection in his one, precious, all important kidney.

Surgery was scheduled.

On May 1st, May Day, we arrived at Children's Hospital early in the morning, in a daze. We were escorted to preop. Max was undressed. We hugged him goodbye. And then a nurse, a perfectly lovely woman who was also a total stranger, took my newborn baby out of my arms. She put him up on her shoulder, and walked away.

As I watched his little face bobbing over her shoulder, as I watched him disappear through the swinging doors of the OR, I really and truly thought I might throw up. I was numb. We went to the waiting room, filled with other parents who looked as catatonic as I felt. We watched TV, we addressed invitations to the naming ceremony, I pumped. And pumped. And pumped. It was as though my body, having lost the ability (temporarily) to care for my child, was trying to prove itself worthy of the task. I could have fed a small country that day. Bottle after bottle was labeled and taken to the freezer. Labeled with the name of my baby.

After what seemed like days, but was really only hours, we were called to the recovery room, and there was our boy. Dazed and confused. "He looks stoned." "Yeah he does. Lucky kid. Wonder if they'll give us some." "Somehow, I doubt it." "Yeah. Bummer."

We had to keep it light, because we were faced with a reality that was anything but funny. Tubes, wires, tape, monitors, lights, beeping, blood, stitches, hoses......stuff you see on TV, but this was all attached to our tiny son.

We lived at the hospital for a few days, Sami leaving for work each morning, me staying behind to care for Max. And then we headed home, south down route 3, with Sami's cousin driving alongside.

More quickly then I expected, then I could have hoped for, he healed. The tape came off, the adhesive left on his skin wore away, the stitches came out, the wounds healed.....at least the physical ones did.

But having a child who is sick, who is born with a birth defect, changes you forever. The cold hard reality, that the human body is not guaranteed The reminder that when a baby is born "perfect", it is indeed a miracle, not to be taken lightly. Life is a gift. When something - anything - goes wrong, your heart is always a little bit broken, because the pure joy of having a child is altered by the fear and concern for their wellbeing, and the burden (emotional, financial and otherwise) that comes with the reality of medical care.

One way that the reality of his condition haunts us is with the annual exams. They are just ultrasounds at this point, because we have refused the more invasive, painful tests. As long as the ultrasound looks clear, and he isn't having any infections, we want to leave well enough alone. But we will always have an extra layer of concern, and we will always remember that the most important result of a prenatal ultrasound is not finding out the sex, but being sure the baby is healthy.

These days, Max is an enormous, thriving third grader. The only sign of his condition are the two large scars on his torso - one on his belly, and one on his back. Someday, he will make up cool stories about those scars to impress the girls, but for this girl, the reality is impressive enough.


Liz said...

Awww, sniff sniff, you made me cry! What a story, and yeah for Max's good kidney. xo

CoffeeJitters (Judy Haley) said...

when you described the nurse walking away with you baby before the surgery it occurred to me that I probably would have thrown up in that moment. i really can't imagine. I'm so glad he's thriving now.