Posts Tagged ‘medical

24
Feb
16

Panic and Humor

When you are a preemie parent, you think that you have that advocacy thing down. Especially when it comes to all the yucky medical stuff. I am learning that I have a long way to go to possessing expert skills.

D’s recent diagnosis raises some serious concerns about potential health issues that may follow him all the way to adulthood. Like pretty much all of the ones he’s gotten or any of our kids have, I guess. I don’t have much to go on yet. His well visit is 3/9. I need to figure out what to ask, what to push for, and when to look at other opinions. I know this is something that can’t just be ignored. The research is scary. The little bit of info I’ve found out about other pediatric patients is scary. Dr. Google is just scary.

I think I naively believed that nothing could really shake me more than his birth. I’m so used to the preemie, hypotonia, and developmental communities having massive resources out there that the void of information I am faced with is just as scary as the panic I’m trying not to have. So to diffuse the feeling of not being able to breathe, I’ll share the mistake I’m able to find some humor in right now.

Don’t forget the snacks.

On Friday, we had our annual eye appointment at the children’s hospital. These appointments always take a minimum of 2.5 hours.  I took D to brunch with his grandma and great-grandma right before our appointment. However the 1/4 of pancake, 2 bites of eggs, and 1/3 of a slice of bacon he ate didn’t last long.

About midway through our almost 4 hours in the clinic, D starts hollering, “I’m hungry! I’m HUNGRY.”

I search my giant bag of coloring books, monster trucks, and crayons for the crackers and fruit snacks I had stuffed in that morning. NOPE. Just a juice box. Apparently, all the snacks are sitting in their neat little baggies on my kitchen counter. AWESOME. I try anyway.

“Ok, buddy. Here’s a juice. That will help your empty tummy,” I coax hopefully.

‘Cause that was totally going to placate an already bored and pissed from having the burning dilation drops kid, “I am not THIRSTY, I’S HUNGRY!” He booms.

I stare at him with an “are you kidding me” kind of look on my face because really folks this 1 day from 4 years old little dude weighs a whopping 30.6 pounds. He’s never hungry or never eats when he is.

Then he starts to cry, so I pick him up to try to calm him down while still trying to offer the fruit/veggie juice. I was rewarded with a series of reaching tantrum proportions, “I’S HUNGRY”‘s. After about 5 minutes, a staff member brings me a bag of goldfish crackers, and I thank her like it is manna from heaven.

He ate five. 5 tiny fish crackers. 5! (and I was happy he ate them, but still)

And because life likes to add insult to injury, his doctor, a teaching professional expert at the #3 children’s hospital in the freaking country apologizes to me for the staff not offering the snack faster because another parent complained that it was sad he had to wait that long. OMG. My mortification over forgetting the freaking afternoon snack almost reduced the impact of the diagnosis. Honestly, I’m still kinda mortified about it.

Post-goldfish bliss

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16
Nov
12

2nd World Prematurity Day, November 17, 2012

Prematurity, talk about it. Be aware. Let’s stop the #1 cause of infant mortality in the world.

Drake is very, very healthy for a 2lb-er, 30 weeker and we are still working through effects of prematurity for him. I have still needed to change my career so I can care for him in the way he needs. In addition, he’s being treated for a birth defect and had surgery at less than a year old.

I want to use our experiences as a family to make a difference.

 

NICU journey in PICS




Drake’s 3rd Birthday

February 20th, 2015

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