Monday, July 19, 2010

Circumvention

It wasn't until Mindy was pregnant that we wondered what sex our baby would be. We both worried that having a boy would be a little unnerving because, well, we're not boys and we don't have penises. I think I was the one to wonder about circumcision. I asked Mindy what we'd do. We discussed over a matter of weeks and months. We asked your opinions, we asked medical opinions.

The questions were simple, "Why did you circumcise your son?" Most people answered this questions with either a blank look or something like, "because his dad is."

This didn't seem like a good enough reason for us. Considering 80% of the world doesn't practice this genital mutilation, it seemed horrible and barbaric.

Oh, there you go, saying something like, "It's healthier!!!! It's cleaner!!!!" Sorry, but most of the things I've read (and doctors I've talked to) say there's no evidence of this. I mean, yeah, you have to wash it, but it doesn't cause any other problems.

Of course, we worried at our decision because our poor son would already have 2 moms, like he needed some assholes in the locker room making fun of his manhood. We weighed this.

But, I feel like I'm fighting for him. Male circumcision seems no different than female circumcision. Would you alter your little girl's genitals? Would you make your tiny baby go through plastic surgery because you didn't like the way his nose looked? It's cruel.

For the longest time, everyone left Cyrus alone. Or rather, they left us alone. We'd told several nurses in passing conversation that we weren't interested in cutting off part of his penis. I think it wasn't until his latest surgery that the surgeon's nurse came out of the suite to see if we wanted him circumcised because, "it was best to do it while he was out." Mindy and I said, "NO" very loudly and in sync. Actually, I think the surgeon had already asked us before the procedure. A few times.

Today a nurse who's never taken care of our little man (and his proud manhood) said, "Uh, did you want him circumcised?" I waved his hand in the air and did that annoying thing where you make a baby voice and said, "please don't cut my genitals." She said she just wanted to make sure.


Listen up. We may be lesbians, but we know what penises look like. We know the difference between cut and uncut. It's not like we've been changing his diapers for months wondering what birth defect he had; it's not like we were too embarrassed to ask. We're not clueless. We're not Jewish, either.

Since he's leaving soon, it just seems like the question has been coming up a lot. I figured, in the beginning, that they didn't bother people with it unless they asked.

I think we've made the right decision. If Cy wants to be circumcised, he can make that decision. But there's no way I can bring myself to eliminate part of his body when it's not necessary. I don't want him to look at me when he's 14 and accuse me of genital mutilation.

There was a while when Cy had a baby neighbor who weighed only 3 pounds. I saw the doctor come out with a measuring tape... it had to be so big before they could do it. The baby was wheeled away. Minutes later I heard crying down the hallway and the baby was wheeled back in. The parents looked anxiously at the doctor. When he told them it was done, they sighed in relief . And then the doctor smiled and said, "That's the smallest one I've ever done."

Wednesday, July 14, 2010

Crescendo

It's on. Cy's surgery starts at 9:30 in the morning. It should last only 1.5 hours. After which he will be pumped full of morphine for pain. The doctors said his recovery time is 5-7 days. In 5-7 days he could be home with us. You could be invited to our house for dinner and just happen to meet our son.

Yesterday I was really stoked, thinking that he could be home so soon, that his problems might be solved. Today, though, I'm nervous and crazy again. The last time he had surgery he had seizures and stayed on the vent for days and days. The doctors have been loading him up with seizure medication.

The fear I have about his surgery all revolves around those fucking seizures. But now I'm starting to think about his little belly. The surgeon likes to do it "old school," so he'll make an incision in his little, precious stomach. Again, here comes the education...I can see the clamps holding his little stomach open. I wonder how big the scar will be. I hope the pain meds are enough to keep him comfortable until it's healed. He'll never know his own body without those scars. He'll think he was born with them, and in a way, he will be.

I've read that preemie parents celebrate two birthdays for their kids: the day they were born, and the day they come home from the hospital. March 21 is still too painful for me to want to remember. I'm not sure that next year at that time we'll be able to say "it's our son's birthday!" And I wonder, as he grows up, if I can mask the trauma and the horror in my voice when he asks about the day he was born.

Well, Cyrus, it went like this:

After 2 and a half weeks in the hospital, your mom and I were really starting to think we'd make it far, maybe to the end. But she started having some pains in her stomach, and when she realized it had nothing to do with having to go to the bathroom, and after she'd fretted for a while, she asked me to lift up the sheet and look between her legs. I saw blood. Lots of very red blood. And then we called the nurses and in seconds the doctors came and speculumed her and actually stepped back as more (much more) blood ran out of her body.

She was wheeled across the hospital to the delivery side where she had nurses put those straps on her...the ones that show contractions. And I saw her stomach contracting, turning into a hard ball. And it was snowing outside; the roof was covered in snow. I was dressed in my rugby practice clothes but had decided not to go because it was too cold to handle. My stomach turned over and I hoped it would be a c-section because the thought of watching your mom give birth to you at 25 weeks and 1 and a half pounds would be enough to kill me. Rot me from the inside out.

The doctors said you were were coming out feet first, in fact, your legs were already making their way out. And in 5 minutes, your mom was in the E.R. and a nurse handed me a blue gown. And there went your mom down the hallway, pale, scared. And I stood with my gown on and tried not to cry because your grandparents were there. They took a picture.



I didn't see any of the gore of the surgery, but I heard your tiny squeak when they pulled you out. I hoped it wouldn't be the only time I ever heard your voice. The nurses took you to a small room attached to the surgery suite. I couldn't go there until you were stabilized. When it was time, I walked into the room, the doctors all looking at me. One said congratulations and shook my hand. I peered at you in a plastic cube, with a little hat on your little head and I left.

We didn't really meet you until 7 hours later. You squeezed our pinkies, but we were afraid to touch you too much. I was afraid. I was nauseous. I wished we'd never wanted a baby.

* * *

But the day of him leaving the hospital will be joyous, but we're afraid to get excited, to be hopeful. Every time we get comfortable and think that we're almost done, ready to wipe away the last 5 months, something happens. We're reminded we're human.

I'm shaking right now and crying, too. His birth rips me up. So does the idea that he's ours. He's beautiful. And I'm starting to feel like we've gotten away with something, that our lives can return to normal. No. Don't you dare say our lives will never be the same again. We will be the same again. Mindy and I will slowly become ourselves, the love in our house will grow (just like it used to), we'll see our friends again. We'll live. We'll all be alive, little man.

Sunday, July 11, 2010

Cause and Effect

As Mindy and I were waiting for Mom and Dad to meet us at a restaurant, I saw a 10 (14?) year old boy walking in, holding his mom's hand. He walked stiffly, like a robot, like a person who wasn't in control of his muscles. He smiled the whole time and made a noise which I could only understand as contentment or slight anxiety. His head was titled to one side.

I looked at Mindy and said, "That won't be him."

* * *

While I was visiting the Little Man yesterday, I looked at his nurse and said, "I'm 75% serious when I say this, 'give us the fucking syringe pump and send us home.'" She said she'd talk to the doctors about it.

You see, Cyrus is still in the hospital because he breathes too fast. He breathes too fast because he has reflux. He has reflux because he's a preemie. The reflux causes micro-aspiration. That causes him to breathe too fast. I hope you see the horrible cycle.

Mindy and I have noticed that the past few days he's started to become more agitated. All of the nurses have agreed that Cy-Guy is the coolest, most laid back baby of all time. Ever. But not recently. He gags, pukes, and squirms. He has even cried a few times. He never cries. It's obvious he's in pain. Imagine having heartburn all the time. Then puking. Then having more heartburn. He never gets a break.

So, he's got this tube that runs from his nose to his stomach; this keeps his reflux alive...his esophageal sphincter can't close completely...which causes more aspiration...which causes fast breathing...which causes him to not be able to eat...which causes him to need the tube that runs from his nose into his stomach...which exacerbates the reflux...which...

* * *
One option the nurse gave us, and today the doctor mentioned is a nissen and g-tube. As a relatively intelligent person, I realize this procedure is easy. But as Cyrus' mom, I remember the last time he was entubated and he seized and seized... Seizures can cause brain damage. And you know what brain damage means.

You're wondering why this seems like the best thing to do? Well, it would take that NG tube out, which would help his sphincter close, which would mean his reflux would get better, which would mean that he wouldn't aspirate on his food, which means his breathing would become regulated, which means he could learn how to love his bottle (without huffing and puffing while eating) and give his lungs time to grow and heal.

What Mindy and I wanted was to just bring him home on the NG tube. We could pump his food through it every 3 hours like the nurses do. We could do what they do...they agreed we could. But it seems that he'd still have the reflux and all the pain.

* * *

Like I said, we haven't had "the talk" with the doctors. It seems certain we will in the next few days, though. They'll say it's all "routine" and I'll try not to cry in front of them. That means I'll just cuss a little more when I'm asking questions.

If you've ever seen your preemie baby seize, raise your hand...It's horrible. And now I watch him gag and turn bright red. Then he frowns, like he's wondering why I'd do that to him. We'd rather him gag a thousand times than lose half a brain...than lose any part of his brain.

So it looks like we have another decision to make. And don't say, "that's just like a parent" or "now you know what it's like to be a new parent." Shut up. I'm at the stage now where I'll punch you. I will fucking punch you.

* * *

I've been through some traumatic things in my life: watching a black trash bag of puppies drown when I was 5 (that's another blog. you'll understand if you're from a small town), learning of my uncle's tragic car wreck when I was 6, watching my grandpa breathe his last breath when I was 17, coming out in a small town at the same age. And of course, all of the small things we all go through but can't remember.

They were always explained away with a small phrase, "because." When my Oklahoman friend and I told our fellow grad students that we'd drowned puppies their eyes were wide and mouths opened, "Why!?" they asked. "Because...it's what happens where we're from." When anyone died in my family, besides religion, the reason mom told me was "because things happen." When my parents questioned me about why I was gay, all I could say was, "because."

When my beautiful son asks why he was born so early, why he has so many scars on his stomach, why he wears glasses when most kids don't, why we wanted a baby in the first place, I'm afraid that old, tired expression is all I'll have to give him. That expression that's used to sedate children so they won't ask more, so they don't hurt more..."because."

Because things just happen.

Tuesday, July 6, 2010

Love

I'm in love with two people at the same time. One is my wife, one is my son. Or maybe I just have a crush on him.

Since I'm unemployed, I've got nothing to do but clean the house, play with my turntable, and see the little man.

A few days after we learned that he has an ASD, we were able to feed him. The doctors gave him lasix to help remove some fluid from his lungs; he breathes slower now. Because of his nearly normal breathing we started feeding him a bottle. Every day he's gotten exponentially better. Yesterday he ate 25 ml at noon and 35 at 6:00. He at the 35 in 20 minutes. That's crazy. (however, I've just received a text from Mindy saying his breathing is fast today--that could mean bad things, or that we can't give him a bottle today)

Anyway, I'm not working. I've forgotten how to write. Sometimes I read. Other than that, the only thing that occupies my brain is Cy-guy. When I'm not with him I think about him. When I go to sleep, I see the NICU. I remember his smell. His name is in my head all day. I've lost myself. It's exactly the same as when I met Mindy. Holding him makes me feel less crazy, and I do everything to please him so he won't leave me.

Last night I dreamt that we got to take him home for the night. We checked him out like a library book. I dreamt that my own son lived in our house.

It's been 15 weeks and 2 days since his birth. For that long we've gone to the hospital once or twice (or more) a day. Now that he's bigger it's harder to leave and stay away. When he lived in the cube we weren't allowed to touch him or anything, so we stayed just an hour or less. Now that we can hold him whenever and kiss all over him, and feed him, well, leaving sucks. But life goes on outside of the NICU. Kindof. In between holding him I think about holding him while I scoop the litter, wash clothes, clean the bathroom and kitchen, play on facebook, blog...

I hope he's home soon, but I have a feeling it won't be until August. That bums me out because I wanted to spend 6 solid weeks with him at home, with Mindy, too, of course. School starts August 24th (I forgot that I teach...I could be working on my fall syllabus). So, that would be only 2 weeks with him before life would begin again.

I guess I've come to the last stage of grief: acceptance. I accept the fact that my baby lives in a hospital crib, that I have to get buzzed into the doors, that I have to sign in to see him, that my temperature must be taken once a day, that I can't see him between the hours of 6:45-7:45 in the morning and evening, that sometimes those hours are stretched and manipulated because of the doctors doing rounds, that the nurses know more about him that we do, that he will need more surgeries, that he can't really meet any of you for months, that he'll be in and out of the hospital. That I love him.