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?

26

Yeah. Today, er, yesterday was my birthday. I'm twenty-six. Gah, I'm getting so effing old. I can feel the creepy cold fingers of thirty wrapping around my neck as I fight like hell not to give up my twenties. The last few weeks of stress combined with my inability to take the lady hormones I desperately need (breastfeeding and all that) have created streaks of gray in my usually black hair. I'm starting to look as old as Dave--and damn, that's old. Like cranky old bastard yelling at the kids to get off his lawn old.

With the new kiddo and all, this year was a really laid back celebration. Dave-O made dinner, picked up my fave cheesecake, brought home a fabulous flower arrangement and an iTunes gift card. Best gift of all though? (Besides his burning love for me and the munchkin, of course.) An uninterrupted four hours of sleep. It was heaven. Absolute heaven. Dave forced me into the bedroom, turned on the TV so I wouldn't hear Nyx fussing or wailing, assured me there was plenty of breast milk in the fridge for the kiddo (enough for three feedings) and closed the door. I passed out in seconds and woke up four hours later with boobies bursting with milk. Best four hours of sleep I've had since August.

In Nyx related news, we took her in for a pedi visit today. It's the first time she's seen Dr. Svendsen since her surgery. The doc was totally impressed by Nyx's vast improvement. Thumbelina has gained one pound and two ounces since she was discharged from TCH. Yeah. She gained that much weight in, like, two weeks. Holy hell. Can you imagine what the fat content of my breast milk must be? I wondered where my ass had gone...and now I know!

On the crappy front, Nyx has a sacral dimple that we have to have checked out to rule out spina bifida or kidney problems. I know. I've just about had it with the seemingly never-ending health issues. We're still waiting for the kiddo's chromosome tests to rule out DiGeorge, Turners, Noonan and something else. Fingers crossed, she doesn't have any other underlying issues. But, if she does, we'll deal.

We seem to be getting really good at plowing through the poo.

Caterwauling

So now that Nyx has real blood flow to her lungs, not the wimpy amount that managed to squeeze through a space of less than 3 millimeters, she is having so much fun trying out the pipes. Don't get me wrong. She's not an overly fussy baby or colicky but every now and then she really likes to wail. Dave and I must be weird because we find it hilarious. No, no. It's not the delirium of sleep deprivation.

You see, Nyx doesn't cry normally. She sort of, well, sings. It's high-larious. Her run-of-the-mill cry to let us know she's pissed off at some invasive or uncomfortable test is a series of la's. As in la-la-la-la. When she's really furious, she morphs into Robert Plant. You know "Immigrant Song?" Yeah. She totally nails that one. "AAAAH-ah-AAAH-AH!" Dave and I then supply the lyrics because, really, what the hell else can you do at three in the morning?

The other morning she busted out a new tune. Ever seen So I Married an Axe Murderer? You know the bit where Charlie is singing about Rose at the end? "Rose! Jailbird! Ah-AAH!" Nyx now includes that as part of her early morning repertoire. It's amusing to say the least.

And speaking of Roberta Plant.... I'm off to answer Thumbelina's cries. Sounds like someone has a dirty diaper.