preemie

This is the Day

/ Christina Holzhauser / Leave a comment

There is finally an answer to the ultimate question we’ve all asked for years: today.

Today is the day Cyrus’s button, that fucking port in his stomach where the feeding tube has been hooked up thousands of times, is coming out. Fuck. I’ll even do some math. The tube was inserted about 6 times a day for nearly 8 years…2,735 times is a conservative estimate. For more than two years, the first two of his life, he had to be hooked up to a pump for a better part of the day. Then came the bolus feeds. Then came those times when he’d be out of the house for more than a couple of hours and someone would’ve forgotten the tube. There would be a trip back to the house to retrieve it.

His life revolved around that goddamn tube. If the button broke, which it did many times, he couldn’t eat until it was reinserted, either at home or at a hospital. There were times it fell out and the hole closed and had to be re stretched. There were times when the tube that connected to the button would break. There were so many fucking times that he’d cough in the middle of a feeding and milky liquid would fly everywhere. My house smelled like the sweet rottenness of dairy, soaked into the carpets, the couches, the beds, the sheets, his clothes. There were times when I forgot to feed him.

It was hard to find a babysitter; the tube is a scary thing. He had to go to a particular preschool because they were willing to tube him while others didn’t have the insurance coverage for it. My dad has never tubed him. Very few of you have ever done it. He had to have a doctor’s note in order for the nurse at his school to give him water. Tap water. A doctor’s note. He needed a doctor’s note when he required more tube food in the day. In order for the school to feed him, a doctor had to say so. A doctor has controlled most of his food intake: how much, when, what, how. Until Gaby came, made a nutritious, real smoothie. Of course, I had the instinct to ask the doctor, anyone in a white coat, if it was okay. I had to ask if it was okay to feed my kid. I had to relearn that part of myself.

As I wrote a bit earlier, he has gone without a full day’s feeding since October 1st. It was that time that he was given a tube, secretly, while he was sleeping. When his button broke on November 27th, that seemed a sign that it was time. He hasn’t used the button since.

His eighth birthday is in 15 days. He got the tube in July of 2010. That’s a lot of years for everyone to have to deal with that thing.

He is really excited.

It feels impossible to tell you how ecstatic I am about this. Today is the shedding of the last layer of weighted sadness I still wear from the NICU. The final symbol of all that pain, all of those muddy days of mere existence.

Since he was born, people have said eventually he’d outgrow all of his preemie problems. I was naive to think that they meant “soon.” I suppose in the span of his life, 8 years isn’t a long time to deal with all that’s been thrown at him. For me, though, that’s been the first 8 years of my parenting experience. Doctors, therapists, surgeries. That’s all I’ve known. That’s all he’s known. That’s all you’ve known of him, too.

That’s not even 1/100th of who he his.

If you see me this week and I’m staring into space, I promise I am not sad. If you see me crying, I’m not sad. If you see me drinking too much, I am not sad. I’m light and airy. I am made of sunshine.

The grass is turning green. The buds are forming. The birds are singing. Cyrus’s long winter is over.

The long days of sunshine that pull life from under the dark soil are finally here.

 

 

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Letter to the Principal

/ Christina Holzhauser / Leave a comment

Dear Principal

Last Thursday at the parent teacher conference you mentioned trying to look at the bullying situation through a parent’s lens. From everything you said to me, I’m certain you weren’t quite able to do that. Let me help you see:

Cyrus was born at 25 weeks and 3 days. He was a half-baked fetus who weighed as much as a bottle of ketchup. When he was born, he had no nipples or lips, and his ears were just little flaps of skin easily rolled up if his head was positioned the wrong way. His eyes were closed, like a newborn puppy. It was seven hours after he was born that we, his parents, were finally allowed to see him and touch him. His hand was barely large enough to grip the tip of my pinky. His skin was red and shiny, all the pieces of skull visible through his scalp.

He died several times in the first weeks of his life and had seizures which made his right arm move like he was pumping his fist at a concert. It was then that I started calling him a rock star. He lived in a plastic cube attached to a thousand multicolored cables. He looked something like a motherboard, or like a fuse box, or a large sweet potato decorated with silly string.

His stay in the hospital was 134 days. Over that time, his eyes opened, his lips and ears filled out, he started smiling, but he never learned to eat. After two surgeries: one to reattach his retinas and one to insert a feeding tube and close off his esophagus so he can’t vomit or get heartburn, he came home. And home is where he stayed for a full year, hooked to a feeding pump every three hours for 45 minutes. Home is where the therapists came three times a week, and sometimes the nurses, and sometimes a social worker smelling of stale perfume.

His doctors said he’d never walk and would probably never talk. He had appointments with cardiologists, pediatricians, gastroenterologists, speech language pathologists, ophthalmologists, neurologisists. He wore a helmet for more than six months. He wore braces on his legs for three years.

He learned to walk when he was two and a half, though he never rolled over or crawled. He talked before that, a lot before that.

That pretty much brings us up to the present. Feeding tubes, appointments, seizures,  discussion of milestones, the word delay, the use of the word miracle.  

As you might be able to imagine, this was and can still sometimes be pretty traumatic. There is constant worry of what happens next. There comes a feeling of calm, that things might finally be okay, then something awful happens: a seizure, a black bean stuck in his esophagus, a broken arm which requires surgery. A broken arm. A broken arm which requires surgery. A broken arm which requires surgery now and a year from now.

Now that I’ve adjusted the prescription, let me say some more.

I admit that I’m very protective of my child. I admit that sometimes I let him get away with things because I’m so thankful he’s alive or walking or talking or able to button his pajamas. I admit that I still cry tears of joy when he picks up a pencil and writes a letter. Any letter at all. I am still in awe that he’s able to attend a regular public school at all.However, this does not cloud my judgment or opinion of what is right and wrong in a public school environment.

During the conference you made it a point to tell the story of the pencil, that Cyrus accidentally stabbed someone while they were playing. You then said if someone would’ve done it to him, I would’ve thought it was bullying. You made it clear, once again, that bullying requires an imbalance of power, and that one must feel afraid, that it must be repeated. That is the legal definition of bullying, you said on the phone not too long ago.

I am clever enough to understand the implication of the pencil incident, and it’s offensive. You seem to think I’m incapable of grasping the difference between bullying and accidents that happen during play. I understand you don’t believe anyone is doing anything bad to him because you don’t see it, that he still hangs out with them, that he might be making it up, that I’m over reacting. I understand you don’t know that decisions I make are based on logical, rational thinking, not emotion, as you have implied while trying to see through my parent lens.

I find your tone to be condescending and dismissive.

Here is what I know: Cyrus comes home daily to say he’s being bullied. He has said this since the beginning of the school year. Like you, I wasn’t sure if it was true, and he was unable to communicate the details, so I said nothing to the school or teachers because it wasn’t clear to me what was happening, and I am not one to start drama. Then he broke his arm again, for the third time, at school. It was conveyed to me that adults reported how it happened, that he was chasing a ball and fell. When I asked for more information, to see the accident report, everyone became silent. No one knew the protocol. As you know, it took 9 days to get a copy of the accident report which does not list a witness, as it is required to do. When I asked for a meeting and spoke with everyone, I was told, in fact, no adult saw it happen and that the report was based on what the kids playing said they saw. The group he was playing with includes two of the kid he calls his bullies. It’s interesting that the one day the para (yes, who isn’t his) wasn’t there, this happened. I find this suspect, and I hope you would, too, were you in my situation. I am not upset that an adult wasn’t there, I am upset that the information was hazy. If someone would’ve said, “no adult saw it,” I would’ve have understood. But what ensued was a battle for me to find out the truth.

That alone was upsetting and led me to wonder about what’s happening at school. When he breaks his arm, people are quick to ask what’s wrong with him, what’s wrong with his bones. Poor, fragile, premature Cyrus. Poor Cyrus with the feeding tube. And there are people around him who feed on this energy and attention; It’s not me. The orthopaedic surgeons have said repeatedly that his bones are normal. Yes, he is a little clumsy because he is delayed. He has poor motor skills, as most premature kids do. He has a thick set of glasses. A bully would know that and could easily take advantage.    

Beside the broken arm, there is more and it is most disturbing. Cyrus has said that his bullies have told him to suck his nuts. To be honest, I don’t care that a kid told him to suck his nuts. As I write it, it’s humorous (though I wonder about the environment a kid who would say this comes from). And, if this were the only thing that was said to him, whatever. I heard so much worse when I was his age. What is distressing is someone telling him to kill himself and to break his arm again. The “suck my nuts” I used as an example to prove a specific situation occurred; this is not something Cyrus would say and heard it from someone else. I filled out the bullying report based on this. The school did the investigation and found nothing, of course, so it didn’t happen, though I’m told with what feels like little sincerity that if he perceives someone as bullying, then it’s true.

A seven year old told my seven year old to kill himself.  

 

What is important for you to know is this: I’ve been lied to. I’ve been talked down to. There is a real or perceived imbalance of power. It has been repeated or has the potential to repeat.

 

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Eat, Puke, Love

/ Christina Holzhauser / Leave a comment

Tonight I watched Cyrus eat some ham, the lunch meat kind. He was enjoying it. Asking for more. When there comes this gurgle from what, to an untrained ear, might sound like his stomach. But. It’s in his throat. Deep down there. It’s like one of those inside kinda weird burps we’ve all had happen to us, if maybe just once. You know what I’m talking about.

Then, after some strange head rolls, the ham pieces and a bunch of spit came out of Cyrus’ mouth. I don’t really know how to describe what he does. He’s not able to vomit like the rest of us, because of the Nissen, but his body still acts like it can. That’s when stuff comes up. But, it doesn’t actually come up. I mean, I guess it’s moving upward, but only from somewhere in his esophagus, not his stomach. So, it’s usually just spit mixed with whatever he just ate, though not always chunky if the food’s chunky.

The big surgery he just had 4 weeks ago was supposed to correct this. Yet. Here we are.

After he spit into a napkin and a bowl, he apologized for doing it. And later as I was tucking him into bed, he apologized again. I asked if he did it on purpose. “No, I think it’s just my body,” he said.

He also apologized not too long ago when he was lying in a hospital bed, attached to the machine with all the vitals and beeps, a feeding pump, an iv bag.  “I’m sorry that I’m here,” he said. As if it were his fault. As if he chose that for himself.

When really I chose it, didn’t I?

Cyrus’ first Nissen was done when he was still in the NICU. The doctor seemed very optimistic about it helping him eat. You see, they’re done when patients suffer from severe reflux. Cyrus was refluxing so badly and all the time that he was aspirating it. And then breathing faster and therefore aspirating more because we kept shoving a bottle in his mouth. The feeding tube was the answer to the question you were asking, “When does he get to come home?” All he had to do was eat to leave. Or have calories. So, after 4.5 months of him living at the hospital, the decision was made to place the feeding tube and do the surgery. I was part of that decision.

Part of a decision that has affected his ability to eat since, well, forever. I didn’t quite understand what a Nissen meant for him in the long run. I knew it would get him home. I was under the impression that eventually they fail and then everything is normal. I didn’t realize he wouldn’t be able to burp or puke. As a baby, he never “spit up” after he was 37 weeks gestation. The surgery, I just learned, can never really be reversed.

He retched. He basically dry heaved all day long. Doctors didn’t know why or didn’t care. It was awful. He’d gag and gag. And his little face would turn red. Nothing would come up. Because it’s not supposed to.

I’ve never known what it is to have a child who pukes in the middle of the night. I’ve never heard him burp.

I have watched him doubled over in pain. I’ve seen him eat things he loves only to have his body reject them immediately. I’ve heard him tell people, “my doctor says I can’t have crunchy things.”

I’ve heard him apologize to me for being in the hospital. To me.

***

This last surgery wasn’t really a choice. After a dilation, the surgeon poked a hole in his esophagus. It sounds so awful. But it was written on the form I signed that it could happen. And it did. So. They had to cut him open and fix their mistake. Along the way they decided to redo the fundoplication, which I understood was causing all of the issues and was going to be undone. I’m not a surgeon. I didn’t get to make that call. I wasn’t even informed until after it was over.

And therein lies my anxiety.

I have been Cyrus’ mom for six beautiful years. Of those years, it feels like I haven’t been in control. I know, you might say you aren’t in control, either. But I mean, major, life-altering decisions are made by his nurses, doctors, and therapists. Maybe you think that’s melodramatic. For the first 4.5 months of his life, there was basically nothing I could do to keep him alive. What knowledge and experience does anyone have with a 25 week preemie? So. He lived in a plastic box. I watched as countless things were done to him. All in an effort to save his life. Doctors and nurses did things and I listened to what they had done after they did them.

He left the hospital with the feeding tube and a pump. I was instructed what to feed him and how much and how often. I was told which medicines to give him. I was told by three different therapists all the things that had to be done so he could eat, walk, be able to button his own pants some day. That intensity lasted two years. Things have slowed down, but they’re still there. They’re still everywhere.

He goes to therapists still. They know more than I do about him. About how bodies work and what he’s lacking.

He goes to doctors who sometimes say what a miracle he is and then offer nothing else to help him. He goes to doctors who want to try ALL THE THINGS to make him a whole person.

The control I speak about isn’t necessarily control. It might be more like ownership. To keep Cyrus alive and thriving, it has taken hundreds of people. He belongs to us all. And there is beauty in that. In the idea that it takes a village. It really does for him.

***

Since he’s been in my life, I’ve imagined apocalyptic, acts of nature scenarios. For years his tube feeds were made of Neocate, a powder that cost $600 a month (which insurance quit paying for…). If something happened, how long would he be able to survive with is electric feeding pump and expensive food? After that was pediasure. It’s made of sugar and other b.s., but it was recommended as a total nutrition replacement. It costs money, too. What if our city was blown apart? How much should I keep with me? His button used to fall out of his stomach. How many could be stock piled? What happened if it went out and the hole closed in a few hours (which kind of happened once or twice)? What happened if the one or two tubes were lost?

But Gaby came into my life and made her love smoothie for Cyrus. It’s organic and full of real ingredients. He’s gained so much weight. He looks better.

He still has a feeding tube, though. And a button attached to his stomach that could break at any moment. If we forget the tube on any outting, he doesn’t eat or drink. I mean. He can, but his body doesn’t seem to like it. He wouldn’t last too long without a button, tube, and some caloric smoothie.

***

The question I am asked most is, “Will he always have the tube?” My answer just a month ago was no. No of course not, it’ll come out some time. When he got the tube placed 6 years ago I was told it would be there maybe 6 months. And then every 6 months I was told 6 more months. It’s all just bullshit.

At the follow up appointment at the surgeon’s last week he said, “I’m sure he’ll have this button out in 6 months.”

“Don’t say that,” I said.

He so confident.

He has no clue. I bet his kids don’t have feeding tubes. I bet he’s never watched his kid retch and cough and apologize for being laid up in a hospital bed with a huge, fresh wound running down his stomach. I bet he’s never spent sleepless nights next to his kid while he woke up every hour violently pulling at the cords attached to him screaming, “I need a doctor!” I bet he’s never slept with his son’s feeding tube hooked up to a loud, beeping fucking pump, draped across his neck.

I bet there are so many other people out there going through worse things than this.

***

Maybe Cyrus will never be able to eat. Maybe it’s partly my fault for agreeing to the surgery so many years ago. Maybe he doesn’t really care as much as the rest of us.

The surgeon says that the surgery worked. That everything is fine. I went to the swallow study and saw for myself that food passes through the way it should. Of course, I’m not a radiologist, but I’ve learned a few things from having Cyrus in my life.

An email from the school nurse today said he puked his yogurt and cheese at lunch. Right now, it seems that nothing is the right thing to eat. Here he sits with his esophagus gurgling, his body rejecting everything, and all he does is apologize, once again, for all the things in his life he cannot control.

Here I sit, too.