Saturday, December 17, 2011

The Appointment

Since Cyrus is my first time at being a mom, I don't really know anything. Mindy doesn't either. The truth is, you probably don't want us babysitting your kid unless he's fed by a tube. I have no clue about what regular babies or toddlers eat. I wouldn't know how to feed your kid. Seriously.

We met with a dietician yesterday to discuss "Blenderized Food." It's just regular food stuck in a blender and then stuck in his tube. It's easy. Right. Except I have no idea how much to put in his tube. I don't know how many calories he needs. I learned just yesterday that one teaspoon of oil is 45 calories. Sweet.

But on Monday we're traveling to St. Louis to see a pediatric GI doctor. Yeah, we've seen one here in Columbia, but he was a douche. Just threw some medicine at Cyrus' retching disorder.

And that's the reason I picked up the 'ol computer tonight. I have no idea, once again, how regular toddlers sleep. Ours sleeps fitfully. He coughs, gags, and cries. I hear his crying about 4 times a night. We still have to give him medicine at 1:00 in the morning, every night. Because he is fed by a tube, we sometimes have to feed him after he goes to bed. There is nothing worse than feeding a kid with a tube in the dark. Sometimes he coughs and the food shoots back up in our faces. Then he cries because he has coughed, so he tries to roll to get comfortable, all the while a tube still hooked to his button. Then he gags on his coughing. Then he cries.

So right now Mindy is holding Cyrus because he was just fed and starting crying and coughing and gagging a little. Mindy says she doesn't hear him at night, all the noises he makes, but I do.

We're tired. We've been getting up in the middle of the night for at least 6 months now. We've been taking turns sleeping on the couch for 18 months. At first we had to feed him every three hours, I guess the way normal parents would, but we'd have to hook him up to his pump at night. We'd hold him while he "ate" because that's what regular babies do. You hold your babies while they eat, be it bottle or nipple. So we tried. We wanted him to feel comforted while his stomach filled up.

Then we started pumping him over night because we figured after all the shit we'd been through, it was time to sleep a little. That was okay, but if something weird would happen to the pump it would make this horrible, high-pitched siren noise and wake us up. All of us. Some nights his tube would pop open (it would take too long to describe what I mean) and his food would leak all over him. When we would wake up in the morning, we'd roll over to cuddle him and find him freezing, sleeping in a huge puddle of cold milk stuff. Other times it would leak out all over the hardwood or the carpet.

I'm sure that our coming to medicate him in in the middle of the night was horrifying for him at first. Could you imagine being roused from sleep to find someone pawing at your pajamas? He sleeps through it now, for the most part. We still don't get to.

For the record, he is sleeping on Mindy in our little rocking chair. He has cried and moved five times since I started writing this.

This exhaustion is mind-numbing. I don't write. I don't work out. I'm lucky to make it through the day. Mindy and I crash around 9:30. And even though we sometimes sleep until 6:30 or 7:00, it doesn't matter. It doesn't feel like sleep. We are not rested.

I know you've heard this from me before. I'm sorry you have to hear it again. The doctors haven't listened so far, so my hope is that you will.

I'm not getting excited about our appointment on Monday. I'm sure a doctor will barely touch him and wave his hands around and say the same shit we've heard before. I want to believe that he'll know exactly what to do. That he'll laugh and a give a solution and Cyrus will be normal.

Whatever it is that toddlers eat, and however much they do, I want my son to do it, too.


  1. I don't know if she sees kiddos but my GI Specialist in STL is amazing. Cause if her I don't vomit and have diarrhea EVERY SINGLE DAY like I did for over a year. Dr Ahmed Singh at Gi specialists of St Louis. I love her.

  2. I know nothing of what you go through with Cyrus, but I think of you often and hope with all my might something changes for the best for all of you. When you need toddler help, you've always got a friend in me.