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Week 37: FINALLY! A post worthy of all caps.

Nothing but great news, news worthy of obnoxiously typing in ALL CAPS!

Ben is a movin’ and a groovin’. If we had carpet, he’d be crawling, I’m almost positive. He’s making leaps and bounds in his development, which leads me to…

His 9 month appointment was this morning. He looks great, is 19lbs 7oz, and is hitting a lot of 9 month milestones. He has a few delays – eating solids, sitting up from laying down, pulling to standing, etc – but nothing we can’t handle. FINALLY, to have a real live doctor tell us that all the work Ben did in PT this summer really paid off…yeah, that was awesome.

Cold and flu season 2014-2015 will be an extremely different story than last year. You know how we sacrificed my job, our finances, my sanity and many other things to keep Ben at home and away from harmful germs the past 9 months? Well that REALLY paid off too, because he’s too strong to even qualify for Synagis (yay!) and…NO LOCKDOWN!

We still have to be extremely careful and cautious with germs, meaning we will tell you to wash your hands or tell your kids to wash their hands, or tell your kids to stay away from the baby if they have a runny nose, and we ask that you stay away if you’ve been sick, and we will be wiping down all surfaces in public places with sanitzer and wipes, and we may skip out on some crowded events and holiday stuff (yeah, the list is long, I know) but…we can have visitors! We can leave the house! The walls have busted open, mostly because I’m knocking them down.

It was worth it. All the stress and sacrifice that brought us here…so very worth it.

And to top off the list of incredible news – we’ve been going round 100 with one of our hospitals, applying for their last ditch effort they offer for assistance. We weren’t expecting anything, because at this point, nothing has come through for us from hospitals. You know the drill, you read my blog. Not 15 minutes ago I received an email that after reviewing our application we qualify for 50% ASSISTANCE! This means that our $2,500 bill just got sliced IN HALF!

We can leave the house.

We get some help.

Ben is developing beautifully.

We kept him healthy.

We can treat him like an (almost) term baby this winter.

Our marriage grew stronger in the face of all this crap.

FINALLY!

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So You Have a Job? A Real Job?

Today I brought Ben to his first 3 hours of daycare. I drove him there with nothing but fear of fall germs running through my mind. I drove him there with the very real possibility that his pediatrician will tell us that he can’t attend any more in an effort to keep him healthy. I drove him there wondering how I would possibly leave my baby with strangers (and silently applauding all parents who do this every day!).

I dropped him off and left with almost dry eyes. I spent my 3 hours at Caribou working on – gasp! – my book. I hadn’t opened my manuscript since July 17. It’s been 2 months since I’ve taken the time for my work. You know, that whole “author as a living” work. The work that I hadn’t realized I stuck on the back burner, but there it was, all back burner and cold.

When I came to pick Ben up (who was fine, and had a great time at music class, and possibly has his first crush on a cute blonde named Olivia) his teachers asked me how my morning went. “Good, I got a lot of work done.”

“Real work? Like, a real job?”

Yes, a real job.

I’m a writer.

The Walls Are Closing In.

You know how they say parenting and child-birth comes with its own form of amnesia? As in, you have a second baby because you forget how much it hurt the first time? (Ha! RIGHT! If I ever forget the trauma of Ben’s birth it means I’m in a special care facility with a severe brain injury.)  I think I experienced my own version of this amnesia this summer. After months of isolation from the outside world, Ben, Dustin and I were able to break free and experience the great outdoors. We went from washing and sanitizing and never bringing Ben outside our four walls to coming and going as we please, handing him over to family and friends, going to public places and really enjoying having a baby in the family.

I think I had blocked out how awful, lonely, depressing and anxiety filled last winter was….until today, when I was bombarded with information and media updates on Enterovirus 68. It’s not even an epidemic in Minnesota yet, and just the words “severe respiratory illness” are enough to make our preemie parent skin crawl.

And just like that, I realize that it’s fall, and cold and flu season is beginning. I remember now – the fear of germs, the anxiety over Ben getting sick, and the possibility that we will endure another winter of lockdown.

I pulled up to the gym today and was waiting out Ben’s car nap in the parking lot when I noticed how many kids under the age of 4 were heading in to the daycare with their moms. I counted 8 before I couldn’t take anymore. They didn’t look like cute little kids. They looked like deadly germ factories. I couldn’t bring myself to stick Ben in that tiny enclosed space with at least 8 other bigger, curious, probably-have-older-siblings-bringing-home-germs kids. Panic attack ensued, and I left.

Ben goes in for his 9 month check up on Monday, and top of our list is asking his pediatrician (who is a preemie parent herself) what kind of precautions we need to take this cold/flu season. I’ll do whatever she says, obviously…but God, I don’t know if I have the strength to be isolated for another 4-5 months. Not after experiencing freedom.

I love Ben.

But having a preemie can really suck big time.

 

Taking on Daycare, One Baby Step at a Time.

Leaving Ben behind in the NICU was one of – if not the – hardest things I’ve ever done in my life. No parent should ever experience leaving the hospital without their baby. I will never forget sitting in our living room, staring at the Christmas tree, wondering what the hell had just happened and how just 5 days earlier I was still pregnant.

Sometimes those memories and emotions feel as though they’re happening now or again. They seep in your dreams, they flicker at the corner of your mind when a song or scent touches you just right. Just the other day Dustin had to drive to Waconia from his work and he told me that making that drive down the back roads made him feel like he was driving to NICU to visit the baby.

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I found out last week that there’s a good chance my part-time job will become a full-time job. I’m happy about this because finding a (mostly) work from home position that understands you’re a parent first is pretty rare. But this also means that to some extent, at some point, Ben will have to be put into some kind of daycare.

He won’t need to go full-time because I can do some work during nap times and after he goes to bed. But there’s no way one can work full-time from home with a baby crawling around. And really, I’m OK with this because I am a huge supporter of early education. I know a couple days a week in a program will be good for him.

This weekend I found a church daycare near us that offers a “parents morning out” program. It’s for 3 hours one morning a week and runs September – May. At $65/month, I didn’t hesitate to sign up. Initially the idea of having 3 hours to get work done during the day without working around a baby seemed so fabulous that I never stopped to think how hard it would be.

The parent/teacher meet and greet is this Wednesday, and I’m trying to imagine myself leaving Ben with strangers for 3 hours. I know that all parents go through this anxiety to a degree, understandably so.

But I’m near tears myself as I write this picturing Ben scared, or sad, or lonely. What if he gets overwhelmed and wants his momma, and I’m not there? Even before I was allowed to be his parent, I had these same fears. When I would leave him for the night in NICU I would wonder if he would wake up and wonder where I was, or wonder why his heel was being pricked and there was no blurry, fuzzy yet soothing momma lady there to shush him and put one finger on him, the most comfort we could administer in that first week?

When Ben wakes up screaming in the middle of the night, I wonder if it is NICU he is dreaming of. Or of being alone. Or worse, feeling abandoned.

Logic doesn’t do much when it comes to coping with trauma. Logic is all well and good, but it doesn’t penetrate the emotions. And all of these feelings, these horrible, heavy, tear inducing feelings are what tell me that these 3 hours are going to be really good for the both of us.

Hard as hell, but good, too.

Week 35: A Few Victories and a Cold That Won’t Let Go

Sorry older Ben – if you’re wondering why this post is so short, it’s because your momma is sitting at the kitchen table after taking care of you all week with a horrible cold and after a 7 hour meeting yesterday AND after doing 2 hours of work…I’m sick, I’m tired, and I get to go to bed just as soon as I wrap this up!

Victories – our Give Forward page has received more donations than we ever expected. I feel like it’s cliche to say yet again how humbled and grateful we are…but really, we are. Complete strangers have donated, family members that have already done so much have given more, and our friends have been generous beyond compare.

Thanks to all these donations we were able to make a $2,000 payment to Ridgeview. Of all our hospitals we owe money to they have been by far the hardest to deal with. They are inflexible and callous and have given me many a sleepless night. Being able to pay down the $2,797 bill to $797 was a huge relief! And then, to top off the good news, mom called their billing department and told them we’ve exhausted all resources, just made a huge payment and have paid over $1,200 over the past 8 months and asked what it would take for them to settle the balance.

We will be paying them $400 (also from donations) on Tuesday and then THAT BILL IS GONE!!!

One down, two to go. It’s a hell of lot different from where we were two weeks ago. So again, thank you, thank you, thank you.

Physical Therapy – Ben is officially down to 1 visit/month beginning in September! He has made such great progress that he is caught up to about 7 months of age, and considering that he just turned 8 months actual last week, that’s pretty freaking fantastic. Our little spinny dude continues to scoot backwards and, well, spin in fast and furious circles. He so desperately wants to go forward, so we have a few new exercises to help him get there. Additional exercises include working on being able to sit, reach and drop to belly or sit, reach and pull a toy back without falling over unintentionally.

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Life insurance – I FINALLY qualified for Life Insurance. Finally. Now I just have to live to be 80 (or old enough that Ben is an adult and settled, no more of this losing a parent before you’re out of high school bullshit that runs in our family).

I got a coupon in the mail for $20 off a haircut at Aveda. I was long overdue and missing my short hair from this past winter, but a few days in, I am really not loving the cut. I can’t remember the last time I disliked a cut this much. It’s just hair, it will grow back, but when you already feel frumpy and mom-ish and all over gross, a bad haircut is just another wah-wah moment. When you tell a stylist that you HATE stacked hair cuts and she gives you stacked layers all over your head…not cool, lady.

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The cold from hell – all my colds are from hell, thank you life-long mono damaged immune system. It will be a week tomorrow since I got sick and I am feeling maybe 25% better than day 1.

I have to wake up feeling perfect tomorrow because we are going to be insane and attempt the State Fair with a stroller. And a baby. A crowd of tens of thousands. God help us.

 

I’ve Entered a New Circle of Hell: I’m a Sick SAHM.

Last summer I caught a nasty cold…while I was pregnant. It was a miserable experience to have a cold and not be allowed to take any of the “good stuff” to ease my way through it (and by “good stuff” I mean the drugs that you need an ID to purchase to sway you from going all “Breaking Bad” with your pseudo.)

I didn’t think having a cold could be any worse.

But I was wrong.

I’m experiencing my first taste of being sick as a SAHM. And it SUCKS.

I can’t call in sick. I can’t just go to bed. I can’t even really close my eyes just to rest them for fear I might actually doze off and Ben decides to learn to crawl forward and down the stairs he would go (note to us: buy baby gate for awkward 1970’s staircase!).

I’m taking what drugs I can during the day and combining them with energy drinks to counter-act the loopy sensation and the overall drowsiness of being sick on no sleep. I’m sure this is super healthy.

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But not being able to truly rest isn’t even the worst part. The worst of the worst worrying that I’m going to be the one who gets Ben sick for the first time. How can he not catch this cold? We’re together 24/7 and I’m sneezing on or near him just as much as he’s puking on me.

Oh yeah, Ben pukes now. And drools buckets. And screams at night about every two hours. And screams when we lay him down for nap or bed. Because of all this we took him in for our first “I don’t know if it’s teething or if he’s sick” doctor visit yesterday. Ears are clear, lungs sound good, but she couldn’t find any teeth bulging through.

She said his habitual night-waking could be nightmares/night terrors. No one in our house is sleeping much between sickness, nightmares and the responding to the nightmares.

And tomorrow we have PT and we pick up Ben’s new helmet, two events that always lead to an exhausted, crabby baby. I have to be better by tomorrow, or at least significantly improved.

This is so true.

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I’m sure he cares, a little…until he’s tired of sitting in my lap with his teething necklace, realizing that this isn’t an act of affection but a ploy to get momma some rest.

He’s still pretty cute though, even when he pukes on me. For the third time.

 

Giving Forward – Benjamin’s Bills

Yesterday was a day full of frustration and defeat. For the millionth time I spent a few hours on the phone with hospitals and Hennepin County fighting for assistance for Ben. Unfortunately, our last resort hope – that Ben would qualify for medical assistance, MnSure or both, and his initial denial into the program was a mistake – wasn’t a mistake at all.

Why? Because we bring in approximately $2,500 too much for Ben to receive county assistance.

Hospitals offer lots of great charity care programs…if you qualify for them. And for a number of ridiculous reasons – the worst being our 2013 tax returns, which are COMPLETELY IRRELEVANT since I left my job after Ben was born due to his prematurity – we don’t qualify for any of those either.

I’ve heard all this before, but until yesterday hadn’t exhausted all options. But when you are told to either a) have more kids b) take a lower paying job or c) look into medical bankruptcy, I think it’s fair to say you’ve reached the end of the line. Until yesterday, I still had some fight in me. But the white flag has been waved. There’s nothing more to argue with the hospitals and the county.

So what do we do now?

Thanks to the generosity of donations to sell at our Yard Sale Fundraiser in June we were able to raise around $3.400. This helped tremendously, and we were able to pay off several smaller bills and one bigger one. We’ve received a few random “late” donations to the garage sale which have literally helped us make a payment, or put gas in the car, or buy Ben formula.  But then Ben got his helmet, started PT…and to date, we owe just shy of $10,000.

One of the people I talked to yesterday asked about budgeting (don’t even get me started – we can’t reduce our mortgage, student loans have been lowered as far as they can go, and I’m sorry, but cutting $9 for our guilty pleasure Hulu subscription isn’t going to do much), asked if we had any other assets (nope – we emptied our short-term savings a long time ago, and you can’t make us touch our retirement savings and lose money by paying taxes and fees for early withdrawals, nice try), and then asked if we had done any sort of crowd fundraising.

Our intention with the garage sale was to make a dent in Ben’s bills without asking for financial help. Everyone cleans out their closets in the spring, right?  Is there anything worse, anything more degrading, than saying you need money? That you can’t provide for your own family? That your husband has gone back to his college part-time job at Target and that you’re working from home part-time and you still can’t  make the minimum payments the jackasses at the hospital demand?

(And if you’re thinking, just pay what you can…they don’t operate like that anymore, thank you financial collapse of 2008. You don’t pay what they decide is the minimum, they send you to collections.)

I don’t think we have ever felt so humbled and so low in our lives.

And that, friends, is the nutshell story as to how we ended up with a Giving Forward account for Benjamin’s Bills. 

Are there families going through a lot worse who owe a lot more? Yes. Absolutely. But that doesn’t take away from the (and I quote from a financial worker at a hospital here) “shitty situation you guys are in”.

The site has been up for less than a day and people have already been so incredibly generous. The blunt truth is with each donation, I mentally calculate down the amount owed for Ben’s surgery, hospital stay, and his PT. The funds raised will go directly to the hospitals.

So if you see this link posted by our wonderful family and friends on various social media sites, now you understand how we got here. If you can donate any amount, you are making a big difference in our lives. If you can’t donate but can spread the word, you are also making a big difference in our lives. We are lucky to have you all during this incredibly joyous and incredibly challenging first year with our miracle baby!

May 18 2014 353

 

 

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