Happy Thanksgiving!

I have so much to be thankful for this year, namely Nyx and Dave-O and that pesky dog. I'm thankful for our family and friends who have been so supportive.

I'm thankful for the nurses and doctors and surgeons and techs at St. Jo's and Texas Children's who took care of our baby and gave her a chance to thrive.

I'm thankful we have insurance (even if the policy is a little lacking) and the income to break even every month. So many other parents aren't so lucky.

I'm thankful for the readers who find my deliciously naughty tales entertaining enough to plunk down the three or four bucks per copy. I'm thankful for the editors who love my work enough to buy it. I'm even thankful for their virtual red pens.

Even though it's been a year with some amazing highs and some heartbreaking lows, I wouldn't have it any other way. I'm thankful for it all.

When Pigs Fly

Did y'all catch the vid of Paula Deen taking a charity ham to the face? Ohmigod. I wasn't sure whether to laugh or cry. I love Paula Deen. She is the queen of buttery goodness.

Swine flew, indeed.

Anywho. Back to work. I'm writing in bed as Dave and the kiddo sleep. It's hilarious to see these two. They sleep exactly the same way. One arm across the chest, one arm thrown overhead, the occasional snore. It kills me.

Oh, and Nyx laughs in her sleep. It sounds hilarious, like Goofy, actually. "Uh-hyuh-hyuh-hyuh."

Party in the Back

So my baby is growing a mullet. I know. It's simultaneously horrifying and hilarious. I warned Dave subjecting Nyx to six hours of Hair Bands during one of our trips to E-town while in utero was going to have grave consequences. And now I have a mullet baby! For shame!

Her hair is still this reddish auburn color and really thick and long in the back with just the lightest dusting on top. Her eyebrows are still Horatio-Caine-orange and those eyes are as blue as ever. Who knew a chica with the darkest coffee hair and chocolate eyes could have a red-headed blue-eyed kiddo? Ah, the mystery of genetics!

On the heart front, she's doing well. The pink is fading now. Her skin has the slightest blue tinge. I won't be surprised if her sats have fallen to the seventies when we head in for her December cardiologist visit. I don't think we're going to make it to six months before we're forced back to the hospital for her full repair. She just seems to have one of those complicated cases of ToF. The shunt gives great flow to her lungs but the hole between the lower chambers of her heart is really big and allows so much of her blood to mix and--well--there's the blue baby look.

I'm a little nervous about the open heart surgery, especially considering her coronary artery is in the wrong place. It rests right where they need to make the incision. So yeah... And there's something else but I'm not sure if it's something I want to blog about. It's pretty effing depressing but it's a reality so I might throw up a post in the next few days.

Anywho. She's still a smidge on the small side. She's growing well, two pounds a month on mama's milk, but if she could just get to five or six months, her vessels would be so much bigger and easier to work with--but this is where we are and we have to trust in the skills of our surgeons.

Oh, and Dave's company is switching insurance companies on January 1, 2010. A lot of people he works with don't seem to understand why we're so annoyed. Apparently they don't seem to understand how very few pediatric cardiologists there are in this area. Can you imagine the hassle of finding a regular pediatrician willing to accept a patient like Nyx? I was sick to my stomach until I was able to confirm all of our current docs and surgeons are covered by the new plan.

I wish I could hand them the nine inch stack of hospital claims, denials and bills I have sitting on my desk right now. Maybe then they'd understand what it's like to sit on the phone with your insurance company for hours trying to figure out why the hell they won't pay for this medication or that procedure. Maybe they'd like to beg hospital, outpatient and clinic financial offices to set them up on payment plans rather than kicking their bills to collection agencies.

Folks, Dave and I had to apply for charity funds through the Patient Access Network to pay for Nyx's RSV meds. Our pedi even applied to the Children's Miracle Network fund at their clinic just in case. But we have "amazing" insurance, right? We're middle class, right? We're careful with our money and live way within our means but don't let that fool you. One sick baby and you start pinching those pennies until Abe Lincoln begs for mercy.

We were actually denied by the PANF because we make too much money. Yeah. Process that. I practically broke down when the case worker told me that. I was, like, lady, if I had as much money as you think, I wouldn't be asking for a grant to pay for my baby's medication. In the end, it turned out someone had improperly processed our application. We did, eventually, get the grant. And I am so effing thankful. It was all I could do not to cry with relief.

So now I get to fight with our new insurance carrier on the first of January to get coverage for the rest of Nyx's RSV meds. It took Humana four weeks to approve five doses but only pay for a fraction of them. Who wants to bet me United takes even longer and pays even less?

But whatever. I'm learning to let go of my medical frustrations and live in the moment. I have a beautiful, if slightly blue, baby who makes me laugh and cry and make goofy faces and sing silly songs. At the end of the day, what could possibly be more awesome than a chubby cheeked mullet baby?

Mom Jeans

So I spend a lot of time in waiting rooms these days. I've noticed something odd. I don't dress like a mom. I'm still running around in cargo pants, tees, and electric blue and hilighter yellow KangaROOS. I feel like I should hit up Dillards for cardigans and trousers and loafers. Maybe something with an applique or some puff paint? Quacker Factory sweater with some super sexy mom jeans, perhaps?

Was that a collective shudder? Oh well. Can't blame me for trying to blend in to the mom brigade.

On the kiddo front, she's doing well. Her 02 sats have fallen again but this was something we expected. Her shunt is still wide open and doing really well. Her pulmonary valve, however, is totally crapping out on her. There is no way the surgeons will be able to save it in the spring so it will have to go. She's back on her propranolol too. Poor kid hates that stuff but we've got to try to get a little more blood flow through those pulmonary arteries. Those little lungs and vessels have to grow, grow, grow before her open heart surgery!

Pics!

So I finally got around to uploading pics of the kiddo, like, an hour ago. Yes, I'm awake at 3 in the morning. Why? Um, because my baby is living up to her name. She is a true child of the night. I'm sort of wondering if her first teeth will be fangs....

Anywho.

Pics. On Photobucket.

Birth & NICU

Home in September

Texas Childrens Hospital

Home in October

Million Dollar Baby

And the shakedown begins...

So far Nyx has racked up just around a quarter of a million dollars in medical bills from her initial NICU stay and then her time at TCH for her emergency heart surgery. We're still waiting for our insurance company and the various hospitals and providers to settle with one another before we start paying what we owe. From what I can tell, it's not going to be pretty. And we still have at least one open heart surgery to go. On top of that, Nyx's monthly cardiologist visits run just over three grand. Yes. That's right. Three thousand dollars a month. Why so expensive? Well she has to have an echo and EKG every visit. Those things ain't cheap.

Today I found out the company that supplies our pediatrician's office with Synagis, an injection that will help prevent RSV, requires payment up front before they will even ship the drug to the pedi's office. How nice, huh? Our insurance company "approved" five of the six rounds of the injections. You would think they'd pay for them if they approved them but, um, yeah, not so much. These injections cost $1000-4500 per dose depending on your baby's weight.

Yeah. Digest that for a bit.

We belong to that totally unfortunate class of people who make too much money to qualify for any of the useful government programs out there but not enough money to be able to just write a check for $27,000 worth of injections. So we bankrupt ourselves trying to provide our kiddo with the injections she needs or risk it and just pray she doesn't get RSV and end up in the hospital on a ventilator again.

Sucky. Sucky.

But, hey, we don't need health care reform in this country, right? The system works great, right? I guess that makes me a big, fat pinko-loving communist for wanting my insurance company to provide the benefits I've paid for and the pharmaceutical companies not to bend over desperate parents, huh?

Se Las Lavo?

Did you wash your hands? No? Then back away from my kiddo! Since the flu, H1N1, RSV or the common cold will require Nyx to be admitted to the hospital, we have to follow strict rules around here. We just can't risk her becoming infected with any illness that might compromise her lungs. That shunt is her main source of blood to her tiny lungs and even though it's vastly improved her health it simply can't sustain her if she becomes sick. Dehydration is another big concern for Nyx. Her heart just isn't cut out for that kind of work.

So until Nyx has her complete heart repair in four to six months and then makes a full recovery, we've implemented the following rules at Casa O.

If you want to see the kiddo, you need to have had a flu shot. (Just the regular one, not the piggy flu one. Call me crazy but I'm not big on trusting the gubment to fast-track a vaccine.) No, I'm not going to ask to see your immunization record at the door but I'm probably going to ask. (You should get the shot regardless of whether or not you want to see and hold Thumbelina. It's the responsible thing to do.)

If you have a fever, cough, runny nose, sore throat, vomiting or the runs, stay away from my house. If you've been exposed to someone with those symptoms, stay away from my house.

If you smoke, you need to shower and wear clean, smoke free clothes. I'm probably going to be even more super paranoid and ask that you place a blanket between you and the baby. Yeah. I'm that mom.

When you come into the house, head straight to the powder room (snooty, snooty!) and wash your hands. Dave and I strictly adhere to this rule. In fact, Dave comes right home, strips to his skivvies, and jumps into a shower before he ever gets near the kiddo. When we head out to doctor visits or the grocery store or to run errands, we come straight home and wash our hands before touching Nyx.

Don't kiss or touch her face. Keep those cooties to yourself, please!

I realize these are somewhat strict rules and make us seem like paranoid nutters but I'd rather risk offending people by asking them not to touch or visit than to risk my baby's life. I mean, what else can we do?