“When Are You Going to Blog Again?” He Said. You Should Have Enough Material, He Said.

On the way home from the hospital yesterday (for the second time), Lee looks over and says, “When are you going to blog again? You should have more than enough material now.” Yeah, I do. But I don’t want to sound like a miserable human, either, and right now, that’s exactly how I feel I am. Fortunately Callie is happy, pleasant, and smiley enough for both of us. Thank you for taking one for the team, kid!

Currently, I’m sitting in the hospital PICU. It’s only Day 2. When I went to the cafeteria to grab lunch when Callie was sleeping, nothing appealed. If you’ve ever been to Lehigh Valley Hospital’s cafeteria, you know there are plenty of options and all of the food is good. So when nothing appeals anymore, you know you’ve officially spent too much time in the hospital cafeteria. It’s time for a break already.

And hopefully, we’ll get a break soon. Callie had a g tube placed in her stomach so that her tube feeds can go there instead of having a feeding tube taped to her face and hanging down her throat into her intestines (you know, because she’s got reflux and pukes, so it needs to go to her intestines and not her stomach so she can’t throw up formula and aspirate). She also had a nissen done. The surgeon takes part of the stomach and wraps it around the esophagus to prevent her from throwing up and aspirating again. Hopefully this operation will solve our feeding and reflux issues. Hopefully.

When you’re a parent, lots of people feel like they need to give you new parents “advice.” I just want to go on the record saying unless you have a “chronic kid,” please offer all of your friendly parental advice to someone else, because it’s really not helpful to us in any way, and we judge you for it. Now you know. 🙂

One such piece of advice was, “oh, she’s sleeping? You should sleep, too!” While that may be really great advice for the “normal” parent, we have a chronic kid. If she didn’t have a feeding tube taped to her face, that if pulled partly out she could aspirate, yeah, I bet we could nap when she naps. You know, knowing that if she pulled her trach out somehow while we were sleeping, the vent alarms would go off so we’d wake up to that. Best idea ever, right? Yeah, there’s a reason we’re fortunate enough to having nursing 18 hours a day, and it’s not because we can’t hack parenting. So, please, unless you’re a “parent of a chronic kid,” donate your sound parenting advice elsewhere, please.

Three times since I brought up the WordPress site in my browser so I could start typing, Callie has set off alarms. She “desatted,” which means her oxygen level dropped. And by dropped, I mean she was moving around and kicking too much that the sensor didn’t pick up correctly. Machines don’t know that, though. They say, welp, I’m picking up at 86 or 81, and you’re supposed to be above 90, so I’m going to ding really loud until someone silences me, or you stop moving and stay perfectly still so I can get a good and accurate signal. Ever try to tell a squirmy almost 9 month old to stay perfectly still? What’d they say to you in return? Get a clue?

So anyway, she’s over in her crib, laying almost flat, playing with her hands. She’s having a really hard time chewing on her hands, because she has splints on her arms where her IVs are and she can’t bend her arms to get her hands to her face. So far, as long as we continue down this same path, we’ll go home Friday. Friday can’t come soon enough. Friday, we’ll go home, and lay her flat, and watch her try to roll over. And it will be glorious.

I’ve also had the opportunity today to speak with the Medicaid company about their denial of our second ventilator. Because they still say no. So I have the opportunity to get our pulminologist involved now, because we’ve got to see him now, and he’ll help us out. I don’t know what prerequisites are for working in insurance, but it must include, “ability to be an absolute jerk to others in need, not return phone calls, and otherwise be a miserable human.” If you work in insurance and this does not apply to you, let’s talk.

And, I’m trying to work. I’m trying to go back part time. And by go back part time, I mean continue working part time from home, and hopefully start getting into the office more often. And I ask myself every. single. day. how in the heck I’m going to go back to work with all of Callie’s appointments, and insurance battles, and the farmers markets, and the farm stuff, and the house stuff, and everything else that just isn’t getting done. How?!

Guess that’s material for another blog at a future date.

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“So, Because I Work Full-time and Have Primary Insurance, You Won’t Cover a Back Up Ventilator?”

“Ma’am, I’m just sharing with you the reason your request was denied. I can help you file a grievance if you’d like to do that.”

“Yes. Let’s go ahead and do that.”

“What is the reason you need a back up ventilator?”

“We live 30 minutes from the hospital. If something were to happen to my daughter’s ventilator, if something were to go wrong, I would need to bag her until an ambulance came, or until we could get her to a hospital. My daughter is HEALTHY. She breathes on her OWN. She uses the ventilator for pressure support. You want me to take away her ability to breathe on her own, just because of a machine malfunction? You want me to breathe for her instead of letting her breathe?”

“Is that it?”

“Yes, that’s it.”

This is what I had the opportunity to explain to the Medicaid insurance provider yesterday afternoon. Yes, ladies and gentlemen. THIS is precisely what is wrong with our healthcare system.

Callie in Pink

If I didn’t work, if I didn’t have primary insurance, this provider would provide me with a back up ventilator, no questions asked, no hesitations. But because I’m a responsible parent that works to provide for myself and my family, this insurance provider has denied us a back up ventilator. This is real life. I can’t make this up.

When you have a special needs child, you see, you have the opportunity to answer absolutely ridiculous questions like this all the time. You can the opportunity to watch your mailbox for the ridiculous letters and bills. Then you get to make countless phone calls to correct their mistakes. Then you get to make countless phone calls to ensure your child has all of the appointments and follow up appointments that they require. Because you’re a good parent, you provide for your child, and that’s what you NEED to do for your child and your family.

Isn’t our healthcare system fabulous?

Now, don’t get me wrong. They have been extremely helpful in many areas of our “medically fragile child” journey to date. But it’s these “opportunities” that make you question whether you’re cut out to be a parent. Not loving your child, or spending time with them, or providing their care – the crap that makes you question whether you’re cut out for this all-important job is dealing with these “opportunities.”

For the record, I’ll do whatever it absolutely takes to ensure we retain a back up ventilator in this house for us and our nursing staff. Come hell or high water. But I like to do things the right way.

After all, I’m responsible for setting an example for this kid, now, right?! HA!

We’re All Busy, So Let’s Vow to Not Use That Excuse Anymore

The title of today’s blog kind of gives away my feelings right now. For the past few months, really.

Let’s just lay it all out there on the table. Most of the people I know are busy. I mean, really busy. They’ve got families, and jobs, and other jobs, and farms, and a social calendar, and sometimes kids, and if not kids then pets, and volunteering, and clubs, and… and… and…

There’s always pretty much something to do.

So forgive me if we’re in a professional setting and you tell me you’re sorry you’re last minute/late/doing things half-assed because you’re “busy,” and I roll my eyes so hard you’re pretty sure my eyeballs are going to pop out the back of my skull.

No, really. Forgive me.

Some of us took on more than we can chew. Some of us got handed responsibilities we weren’t prepared for. Some of us just like to keep a really filled social calendars which include volunteerism, because let’s be honest, volunteering, while noble, is really benefiting a social good, so that’s social. And some of us just honestly suck at prioritizing and don’t REALLY have too much to do, but can’t organize it, so we scramble and THINK we’re busy.

I’m sure at one point, I’ve been one or all of those things. To be completely honest with you, right now, it’s more of options A and B, but I’ve been C and D as well. No denying that. I own it. (Let’s ALL do ourselves a favor and self-identify with at least one of those options. I think we don’t have to dig too deep to do so.)

It’s May. It’s the beginning of summer. The days are getting longer. The weather is getting warmer. And there are more activities than ever taking up our time. Can we PLEASE do ourselves, our friends, our co-workers, our families, and all other relational entities a HUGE favor, and be honest with ourselves.

If we’re too “busy” and don’t want to be, let’s prioritize and eliminate.

If we’re too “busy” and we were handed circumstances that we weren’t prepared for, let’s find ways to cope, deal, and move on for the better. We’ll be better people for it.

If we’re too “busy” and we don’t want to keep up with the social calendar, how about we prioritize, eliminate what we can, prioritize the rest (hopefully they’re in the same order), and fulfill appointments in that order, without overcrowding.

If we’re too “busy” because we procrastinate, let’s do some self-reflection and learn to prioritize. Make to-do lists that are REASONABLE for the set time frame and work to accomplish those things before making another list. Let’s try to keep this strategy. It won’t be perfect, and we’ll more than likely have piles of lists, but let’s try really hard to work on one list at a time, and be realistic about time frames for completion.

Can we all do ourselves that favor? Seriously. My eyes need a break to see what’s going on in front of me! Thank you, in advance, for your help. 🙂

What’s WRONG with her? And suggestions on how to be a tactful friend.

HI! Where has the time gone? A few weeks ago, Farmer Lee said to me, “You didn’t blog during harvest this past year? Why didn’t you blog about harvest?”

Well, I was kind of busy. Doing things like trying to stay alive and have your kid, Farmer Lee. But it’s cool. You do you, over there.

So, what HAVE I been up to? Well, I’m so glad you asked.

On Tuesday, on day 132, Callie was transferred to a small pediatric rehab hospital! It’s closer to home, and they do a lot of therapy there to help her get ready for home. It’s an amazing place. I’m so glad she’s there. I’m so glad she’s almost home.

Over the past four months, I have learned just how polar our society is. We have been showered by God’s grace through simple acts of kindness by friends, family, and strangers. I can’t even begin to tell you how incredibly supportive most have been. I would like to team some people up with these samaritans, though. Sometimes, people are just plain RUDE.

I get it for the most part. I wouldn’t know what the heck to say if someone had told me a year ago their kid was 14 weeks early, 4 months old, and still not home. I definitely wouldn’t be able to hold a poker face as I stood there in complete shock. But the lack of poker face isn’t what I’m talking about here. Here are a few things NOT to say to someone who is caring for a premature baby:

“What is WRONG with her?”

“Will she be slow?”

“She has a trach now? I hope she won’t have that forever. Right?”

“You can’t take care of her with THAT.”

“You’re still working? How can you be away from her? Is that good for her?”

I don’t think I need to explain to you, good people of the Internet whom more than likely know me (or read my posts and know how I roll). If you think I had the opportunity to make up any of the above statements, well, let’s just suffice to say I don’t have the time, nor creativity, to invest in making up this stuff right now.

I could dwell on that, but I don’t. I can’t. Our family has received SO MUCH love and support and friendship over the past 4 months. SO MUCH. I can’t even quantify it. Perfect strangers have walked into our life because they have heard our story and wanted to help, and we’re forever grateful.

A word of advice as we move forward in our days: Be a friend. Be a friend REGARDLESS of the struggle you know or do not know your dear friend is facing. We’ve all got struggles. Some of us wear them on our sleeves, and some don’t. Just know we all have them, and I’ve yet to meet anyone who couldn’t use a friend.

You know what friends do? They pick up where you last left off. They show concern, and they LISTEN. They know when you have had enough and move on when they need to. They show appreciation for the friendship they have with you, and are there for you when you need them to be (and they know you need them to be, because they LISTENED to you).

Until next time, go forth, and be a FRIEND!

It’s Day 57, and I’m Still Here to Tell the Story

Once upon a time, I said, alright, Lee wants a kid, let’s have a kid.

Then I prayed. Dear Lord, please give me a boy that walks and talks. Seeing as though we weren’t adopting, I knew I wasn’t getting what I wanted (obviously). However, God has an extreme sense of humor.

He gave unto me the smallest little girl he possibly could.

Callie Anne Gauker joined us at 26 weeks 1 day. For those of you who were like me approximately one year ago and don’t know what that means – that means she was 3 months and 1 week – 14 weeks – early.

I get the question A. LOT. “What’s wrong with her?!” Well, NOTHING. Which is why I have begun a lifetime as a mom with a guilt and questioning that only a premie mom knows. Something was wrong with ME. Not her. That’s why she’s early. She’s just over there trying to get her grow on, and for the rest of my lil’ life, I’ll wonder why I couldn’t have stayed pregnant the full 40 weeks, and what I could have done differently.

PS – the answer is nothing. I could have done nothing differently. Preeclampsia is a terrible, terrible thing.

What the HECK is preeclampsia? Well, if you’re like me about 61 days ago, you have no idea. Funny, really.

Preeclampsia is a terrible, terrible disease pregnant woman can get for which delivery is the only cure.

I can’t speak for everyone, but I can tell you that my swelling went out of control in week 25. My typically low blood pressure went though the roof – 170/100 – all of a sudden. Then I was put on bed rest in the hospital. I was going to stay there until I delivered – days, but hopefully months. I made it 4 days. 4. Days. Then, I had liver failure.

My dear friend, and my husband, who were with me the night I delivered Miss Callie, can quote me exactly from that evening. It went something like this:

“I don’t know what dying feels like, but if I did, I’m pretty sure this is what it would feel like, and I don’t like it.”

Imagine a car parked on your chest. You can breathe, but it hurts. It hurts a lot. The pressure is out of control.

Then, I had the opportunity to deliver a very cute, 1 pound 9 ounce baby girl with hair. Via C-Section. So no, I guess I didn’t “deliver,” but isn’t “deliver” much better to say then, “they cut me open and took her from me?” Yeah.

That’s what I thought.

They wisked her away quickly. I didn’t see her for a day and a half. There’s a special place in heaven for NICU nurses. More on that soon.

So, we have a little farm girl. She has good days and hard days. Mostly good days, but some hard. She’s a farm girl. A feisty, fighting farm girl.

There will be plenty of more blogs coming, but here’s my start. Here’s my start as a MOMMY BLOGGER.

Get ready. There are going to be all KINDS of emotions evoked. Nonetheless, it will be real.

From FarmLifeLove: GMO Label Only Perpetuates Wedge Between Farmers

Since the debate began, I’ve been on the fence about how I feel about GMO labeling requirements. After reading this blog, which I found from http://www.askthefarmers.com, I’ve found the perfect response, and it definitely didn’t come from me. Looking for non-GMO? Buy organic. Those farmers work long and hard in the field and on paperwork to meet the requirements of that program. If you’re looking for non-GMO, support the farmers who pay for that certification! Vote with your food dollar!

Read on:

GMO Label Only Perpetuates Wedge Between Farmers.

Reblog: Thought of the Week: Not the Perfect Farm Wife

I could not have said it better. Especially after my episode last night? What episode? So glad you asked.

 

Last year, after we finished putting straw away, I fell into a hold in thr barn and had to be lifted out by Farmer Lee and his cousin.

 

This year all was well. Really, it was. I got home from work with drinks for the crew, did some chores I needed to, ordered pizza for the crew, because ain’t nobody got time for cooking right now, and stepped right into a hole in the road while putting the pizzas in the truck. I mean, I could feel my ankle roll almost the entire way around before I plopped down on the ground.

 

I didn’t drop the pizzas though. And really, that’s what was important, right?

 

So my mother-in-law kindly took me to the ER while the crew rushed to get the last wagons in before a quick storm with 100 mph winds came through. All the wagons got safely put into barns just as it was starting.

 

And like I went crashing down, so did a tree in our steers’ meadow.

 

That being said, I’m clearly not the model farm wife. Our house is a disorganized mess and my garden grows exceptionally tall weeds. But at the end of the day, Farmer Lee, me, and Darla all curl up in bed and sleep well, even if it’s with an added air cast and by passing out from exhaustion. I don’t know life any other way.

Thought of the Week: Not the Perfect Farm Wife.