Tuesday, June 29, 2010
I've been thinking a lot about daddies and daughters. Daddy's Eyes by the Killers has been going round and round in my head. It's odd but I have my daddy's eyes and Nyx has her daddy's eyes. That realization spurred some introspection. I started to think about the very unique relationship between girls and their daddies.
In general, our fathers set the standards for our future interactions with men. If our dads work hard, we want men who aren't afraid of a little hard work. If our dads treat our mothers with respect and display their love for them, we want men who open doors and treat us like equals and who aren't afraid to hold our hands in public or give us the occasional loving swat on the tush while we finish dinner.
When I see Nyx's eyes light up the second Dave walks in the door, I get all mushy and happy. I see how completely ecstatic she is to see her daddy and I just know I made the right choice. I chose the right man. I chose a guy who is willing to work long hours and lots of overtime without complaint so his family can have a really wonderful life. I chose a man who still writes me love letters and brings home flowers for no other reason than he saw a pretty bouquet that he knew I'd just adore. I chose a man who is providing exactly the kind of stable, loving and respectful relationship I one day hope Nyx will share with her significant other.
So a belated Happy Father's Day to all those wonderful daddies out there! I'm off to listen to The Killers one last time.
Thursday, May 13, 2010
Those of us with family members or friends enduring the disease know better than that. I've watched my grandparents, father and now husband deal with diabetes and search for the balance between disease and life. It's not easy but it can be done.
Dave recently moved to insulin as part of his daily regimen. He'd done the diet, weight loss (one hundred pounds or so) and exercise thing with a little Metformin for years and it worked okay. Lately though his blood sugar levels just wouldn't get in line. A lot of that was likely stress and living out of hospital food courts. Some of it is just a progression of the disease.
We were both concerned about the effects insulin would have but we've been pleasantly surprised. Dave's blood sugar levels are better than they've ever been. He has much tighter control and doesn't experience the wide swings between low dips and outrageous highs. I have to say it's kind of a relief to know he's got this thing under control finally.
You see my father is now on the opposite end of the spectrum. His diabetes wasn't well controlled for years. Now he suffers near constant foot pain and has endured multiple cath procedures to place stents in his arteries. All those years of excess sugar spilling into his blood stream and tearing up his blood vessels and organs have finally taken their toll.
And it scares the ever-livin' shit out of me . I watched my grandfather lose both legs and die from diabetes complications too young. The thought of my father suffering the same fate paralyzes me with fear. I can't tell you how much I've cried over the last year. Having a sick baby and a sick dad was almost too much for me. I worry constantly about my dad's ability to continue working and maintaining insurance coverage. I worry about the high stress of his current job and the kind of damage it's doing to his body.
On the flip side, I'm lucky to know a bright, brilliant and totally happenin' young woman who has lived with Type 1 Diabetes for, like, decades. She uses an insulin pump and as far as I can tell has never allowed her disease prevent her from following her bliss.
So hop on over here and read a couple of posts on the life of a diabetic penned by Lauren Nygard, architect and photographer extraordinaire. You just might learn something interesting!
Sunday, May 09, 2010
And yet I wouldn't change a thing. In the last eight months, I have learned so much about love and faith and joy. I've learned to live in the moment. I've learned to see the beauty and wonder in something so simple as Nyx's smile or laugh. I know how incredibly lucky and blessed we are to have made it through those hellish days of uncertainty.
Becoming a mother has changed my relationship with my own mother too. We've always had a close and honest relationship but now we're even closer. Knowing I have someone I can bounce ideas off of or seek advice from without fear of feeling silly or being chastised has been so helpful. Mom's support while Nyx was in the hospital for her surgeries was priceless. I don't know that Dave and I would have made it without my mom here to help with the housekeeping and cooking and shopping and doctor's visits.
The fact that I never had to ask, that my mother just knew that I needed her, showed me the depth of my mother's love for me. It taught me that no matter how my life changes she will always be there for me. Someday I hope to be that person, that rock of support, for Nyx. When she's twenty-six or thirty-six or fifty-seven, I want Nyx to know I'm always there for her just like my mommy has always been there for me.
So Happy Mother's Day to all you mommies out there. To all of you still waiting for that positive pee stick or that successful adoption, I wish you the very best luck this year!
Wednesday, May 05, 2010
Anywho. Enjoy your day! Be safe if you're drinking! A designated driver is a good thing.
Saturday, April 17, 2010
Dave and I were at a loss until we remembered reading about Baby Led Weaning/Baby Led Solids during our breastfeeding class. We did a little research and decided to just dive in head first. And you know what? Best decision we ever made.
With this method you basically skip all that nasty jarred goop and go straight to "people" food. Nyx's first food was fork mashed Russet potatoes. Within a few weeks, she was eating peas, green beans, sweet potatoes, avocados, carrots, pears, plums, steel cut oats, bananas and homemade apple sauce (no sugar.) Her first meat? Texas style ribs straight outta the crockpot. LOL. Kid loved 'em. She's fond of chicken too but hates pork. Lately she's developed a love for whole wheat pasta. Odd but there it is!
And, no, she has no teeth yet. But this child can gum with the best of 'em.
With Baby Led Solids, you encourage your baby to feed herself. She's 7 months old and eating straight off her tray or plate. Sure, she makes a mess but so what? It's all part of the learning process. Don't get me wrong. There are meals where she demands we finger feed her and that's okay too. I think she likes the interaction and gets some kind of power trip out of opening her mouth like a little bird and gesturing toward her food of choice. She does something similar with her sippy cup. She's getting better at picking it up herself but still needs a little help.
I guess this method isn't for everyone. I mean, you have to be okay with the sight of your baby gagging and be confident in your ability to help your baby if she chokes. We've been doing BLS for almost two months and we've had one choking incident and that was because she laughed while she had a piece of plum in her mouth. It was no biggie. She actually cleared it herself and just kept right on laughing.
What can I say? Nyx laughs in the face of danger.
Thursday, April 08, 2010
The claims for Pumpkin's surgery are starting roll in so you can guess what kind of mood I've been in lately. First of all, I'm stunned by some of these charges. You'd think after racking up nearly half a million in medical bills between September and December of last year, I'd be used to these ridiculous and obscene amounts but no...not so much. The anesthesia used on Nyx--just the anesthesia and equipment, not the actual doctor--was $7300.
Hey, wanna know something else really funny? Our policy doesn't cover most of that anesthesia. Isn't that fantastic? Apparently they expected Pumpkin's surgeon to pull a Turk (Scrubs) and operate on her while she's under hypnosis. I mean, seriously, what the flying fuck.
So now I'm waiting for the bills to come so I can compare the billed charges to the insurance claims. Then I can figure out if it's a coding issue or if it's a policy thing. I'm hoping against all hope that it's just a coding problem. If not, we're already on the line for the 5K max for the out-of-pocket portion of our policy and then about 20K so far in not covered/denied charges.
And they still haven't processed any of the claims for her ICU stay (the last one was $125,000 for three-and-a-half days of room and board and meds,) step down stay, the emergency chest tube to reinflate her lungs, the multiple doctors who visited in the ICU and on the 15th floor, the medications, the operating room, the anesthesiologist and so on and so forth.
On top of all this poo, I'm buried in deadlines. I've been working until one or two in the morning. Nyx likes to wake up at six. Luckily she's shifted her last nursing session to midnight or one so once I get her popped off the boob she sleeps for four or five hours. It's exhausting but that's just life I guess.
I keep reminding myself this is just one season of my life. Giving up sleep to care for my sweet little Pumpkin, advance my career and bring in enough income to cover these outrageous medical bills is all worth it in the grand scheme of things.
And when that doesn't work I just throw my head back and scream, "Serenity NOW!"
Saturday, March 27, 2010
Unfortunately there is nothing left of her pulmonary valve. This isn't all that surprising. Her valve was in such bad shape there wasn't much that could be done to save it. For now the lack of a valve isn't too concerning. She'll be okay for, oh, another ten years at least. After that she'll need another open heart procedure to replace the valve.
In the short-term, we're more worried about the arteries feeding her lungs. They are just so small. If they don't grow within the next twelve months, we'll be back at TCH for a cath procedure. Fingers crossed those little buggers grow!
Sunday, March 14, 2010
We've been home for a few days now. Nyx was discharged on Wednesday afternoon. By that point I was ready to sign her out AMA. We had the best experience at that hospital back in September but this time around? Fuck those shitty nurses. Seriously.
Look, I know hospitals are busy places and nurses are overworked but for the love of God! Babies should not miss their pain medications because some nurse can't be bothered to watch the time. I had to pull a Shirley MacClaine ala Terms of Endearment to get my baby her pain medication. (GIVE MY DAUGHTER THE SHOT!) Pumpkin went 9 hours without meds because the orders weren't written properly. I asked the nurse not once, not twice but THREE times if there was something Pumpkin could have instead of the narcotic written for her. No answer, no reply.
I'm not stupid. I know all she had to do was wake the attending. They did it the last time we were on that floor and Nyx had some pain management issues. He was only too happy to come down, check her out and write a new order.
When the docs came through to do rounds, Nyx was clearly in pain so the cardiologist and nurse practitioner wrote new orders for alternating doses of Motrin and Tylenol with Codeine. Great, right? Not so much. The nurse leaves to get the medicine, I assume. Doesn't come back for ten minutes. I buzz for the nurse and am told by the secretary person the nurse will be there soon. Ten more minutes go by. Nyx is screaming and rigid with pain. I'm fed the eff up. I leave her with Dave and head out to find the nurse. She walks by just as I open the door. I lose my shit--as calmly as possible, of course.
Pumpkin got her pain meds.
I figured that would be our one hiccup during the stay. Again, um, not so much. That night they started giving Pumpkin something to make her poop. Guess what? She had a massive adverse reaction. Lots of puking and dry heaving. You can imagine how much fun that was for her with a huge chest incision and a sternum held together with wire. And, of course, she puked up all her pain meds so she had nothing to help with the pain--AGAIN.
Early in the morning, right around shift change, Nyx puked all over herself for the millionth time. I managed to keep the puke from hitting her incision and chest tube sites but it splashed all down her legs and into that crappy little plastic house thing covering the IV on her foot. It soaked the white foam/cloth brace too. I couldn't clean it because the IV was already rather iffy. The catheter wasn't even fully inserted because of a valve. I didn't want to mess with it too much so I buzz the nurse. She tells me it will have to wait until after shift change. Um, okay. What about her pain meds? Those will have to wait too.
I clean up the kiddo (no easy feat since she's tethered to a pulse ox cord and still had a chest tube hanging out of her right side, just under her arm) and change the bedding. Lord knows you can't get a CNA or someone from housekeeping to help with linens at that time of the morning. I get Pumpkin calmed down and we pass out together because neither of us has slept in days--her because of the pain and me because, well, my baby was in pain. Who the hell can sleep through that?
So I wake up a little before eight and still no nurse to clean her foot or to bring pain meds. I talk to the attending during his early morning rounds. He tells me he'll find her and send in her in but she never comes. I buzz and buzz and buzz and she finally--after nearly forty-five minutes later--finds her way to the room. No pain meds in hand because she says the order is PRN. Um, no, it's not. It's every three hours. And she still didn't clean the baby's foot. She disappears.
By this point I am effing livid. The rest of the surgeons and docs and students come through to do their rounds and I tell them exactly what I think about how they and the charge nurse run that floor. My pumpkin is six months old. She has no real concept of pain or how to cope for hours on end with it. To have her suffer because of incompetence was absolutely unacceptable to me. My baby puked all night, sometimes gagging, and there was no suction hooked up in that room. Considering those nurses took half an hour to answer a buzz, my baby would have aspirated and died before any of them finally made it to her room. And that filthy puke foot? How fucking ridiculous is that?
And don't even get me started on the nurse who ordered six (6!) feedings worth of breastmilk from the Milk Bank knowing Nyx wouldn't take a bottle (we told her REPEATEDLY) and then looked surprised the next day when they had to pour all those bottles of milk down the drain. Gee, really? Man, I worked so hard for every single ounce of that milk. To have it go to waste hurt. I'd been pumping that milk to bring home for the sippy cup and to make homemade baby food. I came home with 17 bottles of milk so not too bad a haul but still. I could have had 23!
The poop hit the fan. They sent in a patient advocate, the charge nurse and the floor manager. Nyx finally got her foot cleaned and we had her pain meds on time. It still took an average of fifteen minutes for a nurse to answer a buzz but whatever. We got through those last few days alive.
Our discharge wasn't very smooth either. They came through that morning to do her last two chest x-rays and heel sticks. It took them four sticks to get enough blood. During our four and half days on that floor, the lab techs stuck Pumpkin's heels a total of 19 times!
So anywho. Lab techs take forever to squeeze out those little drops of blood. The nurse that day (a damn fine nurse) came in and told them (in the nicest terms) to fuck off down the hallway. Whatever blood they had was all they were getting. She gave Pumpkin her pain meds and then had someone from x-ray come up to take us down in a wheelchair for her x-rays. Since the kiddo didn't have that tube anymore they wouldn't do portables. Whatever, right?
X-rays and labs done, we waited for the docs to do their rounds and give us instructions. Pumpkin had a little bit of fluid around her heart but it wasn't enough for concern. We'll have it checked out tomorrow at her cardiologist visit in Austin (the first of two this week.) We were given a refresher on cleaning the incision site and giving Pumpkin baths. We went through the list of what to watch for and who to call. Finally, we thought, we're getting the hell out of here.
Except someone misplaced our discharge paperwork. That was ten in the morning. Our nurse finally tracked it down a little after one in the afternoon. Oi! So we sign and sign and make a run for it. I felt like William Wallace ala Braveheart when we finally pulled out of that parking garage and onto Fannin for the last time. FREEDOM!
I will say I don't think our experience with nurses on that floor is indicative of the level of care that hospital offers. I think we just had a batch of lousy nurses. It happens. I'm not about to paint the whole profession with a broad brush. I still think the bulk of nurses are compassionate, caring and skilled people.
If anything, I've learned you have to advocate for your kiddos. I'm sure those nurses thought I was on hellacious bitch but I could care less. I'm a mommy now. Making people cry--that's just part of the job.
Thursday, March 04, 2010
Nyx's first night in the CVICU went very well. She was weaned off the ventilator and various cardiac support drugs during the night. Her pee went from that shocking orange (because of the hemolysis) to clear. By Wednesday afternoon, she was off the vent and doing well.
And then things changed. She stopped all urine output Wednesday evening so the Foley cath had to be reinserted. She still didn't make any pee so they started her back on Lasix. It pulled a little fluid but not much from her body. She also still hadn't woken up fully. She tried to cough and choked so a nurse suctioned some gross ickiness from the back of her throat.
The nurse and I sat her up. Nyx choked and coughed again. Blood gushed down her chest tubes. Like a lot of it. Every time she would move more blood would run down the tubes. It was gross but a good thing. Better out than in, you know?
They gave her a breathing treatment to try to pull up all that grossness and even did a little chest thumping to get gunk moving. It seemed to help some but it wasn't nearly as effective as we'd all hoped.
On Thursday, Nyx started to trend downward. Her urine output was still nearly zero. She was so puffy and swollen I barely recognized her. I'm not kidding. She looked like a marshmallow. They gave her more Lasix and added a second diuretic, Duiril. It took a little more fluid off her body but not much.
Because there was some concern about her heart function, they placed her on Milrinone, a medication to treat acute heart failure. Yeah, um, it's not fun to see that medication stuck into a pump for your kiddo.
Pumpkin's right ventricle is just so incredibly muscular from having to push so hard to shove blood through her pulmonary artery and past that crappy valve. Now that they're repaired that massive hole between her ventricles and opened up that artery, her right ventricle is struggling. It doesn't relax at all in between pumps. And that's a problem. Hopefully it will "learn" to work better over the coming months. If not...well...we'll cross that bridge when we get there.
Thursday afternoon, Pumpkin started to struggle with her breathing. It was more labored and sounded fairly wet. Her oxygen saturation levels fell to the low eighties. They did a chest x-ray and discovered a massive pocket of fluid in her chest. Her lobes of her lungs had collapsed.
Um, yeah. Not good. Like ohmigod my baby is going to stop breathing and die not good.
They put in a third chest tube. It immediately drained nearly 100 cc's (almost four ounces) of fluid. Her right lung reinflated and her O2 sats went right up again. Over night that tube drained an additional 100 cc's of blood and fluid. That's almost eight ounces of fluid from her tiny little chest cavity. No wonder her lungs collapsed!
She stabilized and improved over night. She put out a lot of pee, so much she's no longer puffy and is actually negative in fluid levels for the first time since Tuesday. Her breathing is great although her left lung still has a little fluid in it. That's nothing a little coughing and a breathing treatment or two won't fix.
She was taken off the Milrinone this morning. An echo showed her heart function is normal-ish so she doesn't need any cardiac support drugs. They're giving her a unit of blood right now because her hemoglobin and platelet levels are a little low. She'll get one additional unit of Lasix after the blood just to make sure she doesn't hold onto any excess fluid. Sometime today she'll probably get to try a bottle of breastmilk, not much but an ounce or so.
We're hopeful she'll continue to improve over the next day and get out of the CVICU by the end of the weekend. Not that it's any consolation but Nyx is actually the most stable CVICU patient at the moment. That tells you about the kind of patients treated here. Seems to be the worst of the worst sadly.
But the staff is amazing. I feel completely comfortable leaving Pumpkin in their care. As paranoid as I am about that kid's safety that says a lot.
Friday, February 26, 2010
Dave and I rarely get to vote for any races in the primaries. There were, like, three contested races on the Democratic ticket. Whoopdidoo! A lot of the races in this county have no Democratic candidates so whoever wins the primary wins the whole shebang. It pisses me off that I don't get to vote for those positions.
But what can you do?
I also had my eyebrows waxed while we were out and about. Dave made some phone calls and finalized the arrangements for his direct donation for the kiddo. Since Nyx will be on the bypass, she will get a massive blood transfusion. Dave is her blood type. I'm not. He's going to give tomorrow afternoon so it can be shipped to Houston. The hospital has this three days policy on blood products. Adults do fine on blood that's been on the shelf for weeks. Babies need blood that's no more than three days old. Odd but there it is.
So that's that. We're just finishing up the last of our errands before hitting the road on Sunday morning. The mood is decidedly more relaxed this go around.
Thursday, February 25, 2010
When we were pregnant, Dave and I knew we wanted to give breastfeeding that ole college try because it really is the best food for a baby. Formula is great for those mommies who can't make breastmilk (and, yes, there are women who try so hard to make even just a few drops of milk but can't) but I wanted to see if I could give my kiddo nature's finest.
That first week was absolute hell. Nyx wasn't allowed to even attempt feeding from the breast so I pumped and pumped and pumped and fed her through a syringe and nipple. I made so much colostrum that first morning after her birth but then for two whole days I was lucky to get a drop or two. Then, suddenly, on the third day I was gushing milk.
I'm not kidding when I say my boobies swelled up to I or J cups. My tatas were bigger than my six pound five ounce kiddo. They were ginormous! Even today my gazangas fit a FF or G cup depending on the bra cut. (FF=For Fuck's Sake!) (G=Great Googly Moogly!)
Once Nyx was able to attempt latching, we had to use a nipple shield because her mouth was tiny. I also had to wear those evil tit torture device things called shells in my bra all effing day long. They basically grab hold of your nipple and form it into the "right" shape. Yeah, um, not comfortable.
During that time, I was still pumping extra milk. Nyx ate 12 times a day straight from the tap. I was able to pump an additional 12 to 16 feedings worth of milk. That's right. I was producing a total of 48-56 ounces of milk per day. One of the icky side effects a lot of NICU mommies face is oversupply. It is a bitch. Your boobs are on fire 24/7 and leak milk every time a baby--any baby--makes even the faintest of noises. I would have let down and spill two or three ounces of milk. Embarrassing!
After Nyx was home from TCH and we had some time to work on latch, I ditched the shield and shells. We figured it out and made it work. It hurt like hell though. "They" say breastfeeding done right doesn't hurt. LIES. It does. All mommies I know breastfeed experienced that same pins and needles let down sensation during the first few weeks. It does go away but it's rough until you get to that point. Lots of foot stomping and hissing.
While at TCH, Nyx refused to take breastmilk from a bottle, a problem we still face today. Don't get me wrong. There is nothing more intimate and beautiful than nursing your baby but let's be honest. Every mommy needs a break. It's impossible to take even a nap when your booby baby won't let Daddy give her a bottle of breastmilk. We're also facing a bit of a problem after the kiddo's surgery. She won't be able to nurse for a few days so she will have to take the bottle. Dave can get her to take just about 3 ounces before she gets really pissed and starts demanding her booby. At least we know she won't starve.
Nyx still eats every 3 hours or so around the clock. Sometimes she makes it four hours. Introducing solids, despite what everyone told me, didn't make one bit of difference in her milk intake schedule. And that's okay. Those feeding schedules are lame. Sure, they work for some babies but not all of them. Nyx is one of those babies and I'm not going to press the issue. She can eat what she wants, when she wants.
Looking back, I see how incredibly lucky I was to have such an amazing support system. Dave was so involved in our breastfeeding class and did everything he could to help me during those tough early days of constant pumping. I had access to some truly wonderful lactation consultants at Texas Children's Hospital's Milk Bank. Stress can cause a lot of problems with supply but those women knew all the tricks to help out frazzled mamas.
The nutritionist who visited us when the cardiologists were pushing supplementation of formula was so kind and very well informed. We did the weigh before and after thing and proved Nyx was taking in plenty of milk. I mean, come on! The kid gained 2 pounds in the two weeks after her discharge from TCH.
And our pediatrician! Dr. Svendsen is amazing. She nursed all of her babies while working full-time. She plots breastfed babies on a separate weight gain chart too. When Dr. Patt was a little concerned about Nyx not gaining fast enough (he sees mainly formula babies,) Dr. Svendsen put the kibosh on any supplementation discussion. Nyx gains 1-1.5 pounds a month. She's a squishy little chubster. Obviously she's gaining fine.
It's funny now but back in the early days when I was pumping or fighting with latching problems or shoving my boobies into those evil shells, I would tell Dave, "Fuck this! I quit!" But I didn't. I would tell myself just one more day. Then it was just one more week. Now I'm terrified of weaning. The thought of losing out on my nursing time with Nyx makes me so sad. I used to think those mommies with nursing three year olds were nuts. Now I know better.
You watch. I'm going to be that hippie mama kicked back on a park bench with her five year old booby barnacle latched on tight!
Tuesday, February 23, 2010
So now I get to pack the bags I just unpacked. Yay!
Monday, February 22, 2010
A quick three minute test told me that wasn't a possibility so I figured it must have been a cyst. I get those annoying corpus luteum cysts that mimic pregnancy symptoms. Just another one of the joys of a bad case of PCOS. I decided to wait it out to see if the cyst would resolve itself before heading in to see my OB/GYN. Typically the treatment for cysts is the same birth control pills I'm on at the moment. If the cyst doesn't go away, you go in for a little snip snip via laproscopy. Not really something I have time for at the moment.
Well. The cyst issue resolved itself Friday night. I rolled over in bed and felt that horrible bubble wrap pop and after half an hour of excruciating pain experienced some relief. So, um, yay!
But the cyst wasn't my real problem. I seem to have picked up some horrid strain of dysentery or typhus or Ebola at TCH. Not surprising considering there are sick kiddos packed onto 21 floors of that tower and I got to ride the elevator of exposure up and down and up and down for two days.
Let's just say I was in a bad way. I had to ask Dave to come home in the middle of a shift because I was so weak I couldn't pick up Nyx. By Friday night, I was begging for an ambulance or a priest. I lost 7 pounds in three days. Don't get me wrong. It's nice to see that lovely low number on my scale. It's one I haven't seen in years. The thing is quick weight loss and dehydration are hell on milk production but I seem to be rebounding. Luckily the kiddo started solids last week so she didn't seem to mind having a little less booby milk available on tap.
Thankfully I'm all better now. My weight has bounced back up but I can tell it's just water retention. My body is parched. Even though it would be nice to keep those seven pounds off, I won't be surprised if I gain back a few.
But if I ever need to fit back into my skinny jeans in a pinch...
Thursday, February 18, 2010
So Nyx's surgery was canceled...at the last minute. They had an influx of emergency admits to the CVICU so the surgeons on staff had to clear out patients deemed "stable" enough to wait a week or two or three. After Nyx suffered through all that invasive and traumatic testing, they bumped us and sent us packing.
I am unbelievably frustrated. Knowing that Nyx has to go through all of this again in such a short time kills me. The look on her sweet little face was heartbreaking. She so doesn't understand why the hell Dave and I are letting people do all of these things to her. It's so hard to see her suffer.
My parents are out a crap load of money too. They not only drove eight or nine hours to get to Houston but they parked their camper at a site serving the medical center. There are lots of wives and husbands of MD Anderson patients living there. Mom and Dad had reserved the site for two weeks so they could help us out at the hospital and the park has a no refund policy so yeah.
Oh, and during all that testing, the docs discovered yet another fucking defect in Nyx's heart. She has an ASD too. That's a hole between the upper chambers of her heart. Her pulmonary arteries aren't growing either.
Let's tally that up, shall we? Hole between bottom chambers of heart. Hole between upper chambers of heart. Right ventricle too thick. Pulmonary valve doesn't work. Pulmonary arteries aren't growing. Pulmonary stenosis still profound. Coronary artery in wrong place. Extra vessels branching off heart.
I will be so glad when this is all over and Nyx is healthy and happy. But Dr. Fraser did warn us we could be back for another procedure before the kiddo starts kindergarten if that right ventricle gets thick again. :(
Sunday, February 14, 2010
Dave is doing a little better. He spends every minute of his off days with Nyx. He doesn't care to talk about the surgery or the what-ifs though so I don't push. It probably not the healthiest approach to this but whatever.
I know a lot of our friends and family don't get why we're so stressed over this. They point out the less than five percent chance of serious complications like that should relax us. Well you know what? Nyx had less than one-half of a percent chance of being born with Tetralogy of Fallot in the first place. As I've said before, we won that genetic jackpot so percentages don't provide any sense of security anymore.
Let's be real. This repair requires a heart-lung bypass machine and complete circulatory arrest. This is a complex open heart procedure made even more difficult by Nyx's small size and the funky anatomy of her heart. Her coronary artery is in the wrong place. She has extra vessels branching off the right side of her heart. All of these things complicate the surgeon's approach.
Because Nyx's pulmonary artery stenosis is so profound, the surgeons can't go in through that artery to gain access to the various areas they need to fix. They will have to cut heart muscle to do all the patches in that area. Once you start cutting muscle...well... But we've been assured failure of the right side of the heart in later years isn't as serious as failure in the left. Like that makes us feel better, right?
Worst of all is knowing we'll be right back in this situation in ten to fifteen years. Maybe twenty, if we're lucky. That valve is going to fail. It's only a question of when. And I hate that. I hate that Nyx will grow up with that shadow looming ominously just out of sight.
But back to that five percent.
The morning Nyx was rushed in for her emergency shunt, she was bumped out of the OR for another little girl in desperate need of a new heart. Just hours earlier, someone, somewhere, had died and left behind that most precious of gifts. Dave and I shared the waiting area with this little girl's extended family. Those people were so happy. Their relief was palpable.
When Dr. Fraser came out to speak with Dave and I about the surgery, to let us know it had gone well and Nyx was doing well, we were relieved. We couldn't wait to go back into the CVICU to see her. But as we prepared to head back, the secretary of that floor came down to the waiting room to let us know the floor was closed. Dave and I had read the visitation literature. We knew what that meant. The floor was only closed to visitors during emergencies and codes.
Was our baby coding?
No. It was the little girl with the new heart. She was brain dead.
I will never, not for the rest of my life, forget the sounds of that child's wailing mother. I will never forget the sight of that poor woman tearing out chunks of her hair and beating her chest. I had only been a mommy for fifteen days but I understood that kind of profound and devastating grief. The love of a parent for his/her child is incomparable to any other love, even that passionate all-consuming love toward one's partner.
Dave and I know what that five percent looks like. It's hard to take comfort in the odds after an experience like that.
So we aren't. We're tempering our optimism with a tiny dose of reality and praying for the best. We have the utmost confidence in our surgeon and the staff at TCH. We know Nyx is in the best possible health for this kind of procedure. And that's that.
For now, though, we're enjoying every second with our chubby little pumpkin head and trying to live in the moment.
Tuesday, February 09, 2010
Last week Bosley sneezed and Nyx laughed so hard her entire body was jiggling. You know that totally adorable baby squeal? Yeah. Just like that. Every time he would sneeze or scratch at his face, she just lost it. I almost died. I couldn't stop laughing. It was seriously one of the funniest things I've ever seen.
Ever since then, anything Bosley related just gives this kid the giggles. She is so in love with this big blubbery baby of a dog. Any time he gets close, she smiles at him and reaches for him. Bosley knows he isn't supposed to get too close to her so he doesn't answer her summons. He just kind of stares at her with that droopy Great Dane look of his.
Nyx, in baby speak: I love you, Bosley. Let me play with your droopy lips!
Bosley, with a huge sigh: You're still here?
Nyx = totally gaga
Bosley = totally bored
Talk about unrequited love...
Saturday, February 06, 2010
And just in time too! We head to Texas Children's Hospital on the 16th for Nyx's open heart surgery. I doubt I'll get much done while we're there. My number one focus is the kiddo so I plan to make good use of the next few days!
Oh, and Dave had the worst day evah. Over the last year or so, I've been socking away five or ten dollars here or there toward a new TV. We haven't bought one since, like, 2003. Nyx will be crawling and pulling herself up on furniture and walking soon so we definitely need something lighter and thinner and easier to bolt down on a console. Also we haven't had anything new in years. After the crap we've been through the last few months (and considering we can't leave the house,) a new TV moved from our "want" to "need" category.
We decided to take advantage of the major sales going on right now and chose a nice, big TV well within our price range at Target. Dave picked it up this morning at the Magnolia Target. The box had some extra tape on it but he didn't think anything of it--until he got it home and there was no power cord, no remote, and no bolts for the stand thingy in the box.
Huh. Weird, right?
He called Target in Magnolia and was told they didn't have another TV in stock and he'd just have to wait for new parts to come in--and pay shipping. He didn't much care for that answer and called the local Target. They didn't have the TV in stock so an exchange wasn't possible. He ended up going to Best Buy and then Radio Shack to find the power cord and remote. The bolts are order only from the manufacturer.
We hooked up the TV...and it didn't work. It had this huge effing gray stripe right down the middle of the screen. At that point, I realized they'd knowingly sold us a broken TV. Missing parts. Taped box. Fucked up screen.
Dave was majorly annoyed. He called the Magnolia Target, got put on hold, like, four times, and then was hung up on by the electronics manager even though he was being so calm and way nicer than I would have been.
Since that Target didn't want to right their wrong, Dave packed up the TV and headed to our local Target. The second he got inside with the TV, a security guy pointed out the return sticker on the box. Yep. Those dirty bastards in Magnolia sold us a returned TV.
Our local Target made everything right. They exchanged our broken Magnavox for a perfect Philips and discounted the price so we only paid a small part of the difference. It took them maybe thirty minutes to sort it all out while it took the Magnolia Target folks an entire day to act like righteous douche bags.
Magnolia Target = Avoid!
Friday, February 05, 2010
In the last few weeks, we've had friends offer us a place to stay once the kiddo is discharged from TCH but has to stay within so many miles of the hospital. Our parents are rearranging schedules and such to be at the hospital or here at the house once we bring Nyx home. Layna happily offered to look after Bosley, no easy feat considering he can be a raging turd. And a few days ago someone stunned us with a check to pay for our hotel that last night before heading into the hospital. (That one made me cry.)
In the past, I've done little things here and there for friends and family in similar situations. A gift card to help during a tight time. Emotional support during an ugly or trying time. When I did those things, I had no idea of how incredibly helpful they really were. I did them because I cared about those people and wanted to make them feel better, even if just for the briefest of moments. I never could have imagined how incredibly heartening it felt to be on the receiving end of that sort of kindness.
If you ever find yourself in a position to do a little something for some one struggling in one way or another, do it. It's a beautiful thing.
Wednesday, February 03, 2010
Nyx was due her February dose of Synagis today. Did she get it? No. See United decided to wait until last Friday to tell us it's not covered even though they've had the paperwork since the second or third of January. I spent an hour on the phone Friday trying to get an appeal and four-and-a-half hours on the phone this morning trying to sort out this mess.
Scott & White has a contract with one specialty pharmacy to fulfill these kinds of orders but our insurance company will only let us order through CVS/Caremark. You can imagine the price difference. Caremark wanted $2700 for the dose but on Friday I'd been quoted $1100 by an insurance rep. Two phone calls and three resubmissions of the claim and we finally got them down to $1238. For 1 mg of medicine.
But it's on the way and I won't have to fight with them again over Synagis until October. I suppose that's the silver lining.
Oh, and yesterday Walgreens did it AGAIN! At least Dave had to deal with it this time...
Thursday, January 28, 2010
I have to say I was shocked at what a huge difference vision insurance made in our yearly eye care bill. We both received exams, new frames and lenses, and I got six months of contacts (expensive Toric lenses) for $255. Whoa, right? Dave's frames and lenses normally run that much--and that's without all the extras like anti-glare and Transitions and all that nifty stuff.
We picked up our glasses today. I haven't worn glasses in about thirteen years. Yeah, um, talk about a mind fuck. I took out my contacts and slipped them on and proceeded to almost puke and then trip over my own feet for an hour. Ugh. It's going to take a while to get used to only being able to see right in front of me instead of having all around vision provided by contacts. But the frames are cute and snazzy so that's a plus.
Tomorrow I'm heading out to do some shopping at Kroger's Mega Deal event (Stockpile, Baby!) and to get my hair did. Eyebrows too. I'm sporting the caterpillar look! Nyx is almost 5 months old so it's time to start getting back to my old self, you know? That means cutting back on the Nacho Libre days (stretchy pants, how I love thee!) and doing something with my hair and face every day, even if it's just a nice ponytail and some lip gloss. When I look good, I feel good.
Thursday, January 21, 2010
When I started dieting and running and taking care of myself, we began frequenting the outdoor farmer's market for produce. Free range eggs found their way into our refrigerator too. I started making whole wheat breads of various types and pasta. I haven't baked in a while but I'm so keen to get my hands busy again. And, really, who doesn't enjoy the smell of freshly baked bread?
As parents, we've somehow fallen into attachment parenting. I didn't even know what the hell attachment parenting was until a few days ago when someone mentioned our style fits that definition. Uh, okay. Whatever. We just sort of did what felt natural to us. We breastfeed, baby wear, co-sleep and cloth diaper. (That co-sleeping thing happened by accident but I'll post on that sometime this week.)
Dave and I have decided we're going to start to slowly wean our diets of processed foods. Now that we have a freezer we can purchase a quarter of a grass fed cow. We have access to grass fed and free range pork and poultry too. This spring, we'll plant a small garden. My mother-in-law has offered to teach me to can which will enable us to purchase fruits and veggies in season from the farmer's market or harvest them from our garden and save them for the long-term.
Are we going to go crazy and swear off all fast food and the occasional bag of Oreos? Nah. We'll still make use of some convenience foods and enjoy yummy tasties like chips and such. But I think for our overall health and to reach our long-term goal of self-sufficiency and possible homesteading this is a good start.
Tuesday, January 19, 2010
I hope you'll enjoy the first installment in Jace and Isla's story! Can't wait to get the next one out to you!
When the craving takes hold, the only thing to do is ride it out…
Midnight Vice, Book 1
Unfortunately, the demonic blood pumping through her veins keeps them separated, since relationships between human descendants of archangels and demons aren’t actively encouraged. Staying away from him, though, is impossible after she winds up on the receiving end of a nasty sexual-compulsion curse, courtesy of a sadistic vampiress. Suddenly Isla is overwhelmed with a life-threatening lust only Jace can sate.
Jace’s principles were once strong enough to resist his longing for the alluring Isla, but in the face of her desperate craving, his desire breaks free—leaving him wondering if she’s not the only one affected by the spell. He’d be more than happy to satisfy Isla’s increasing need for sexual release, if they weren’t in a race against time to reverse the curse before it turns deadly.
For Isla, it’s not just her life she’s worried about losing. It’s her heart.
Warning: Contains wicked hot shower sex, raging-hormone-induced naughty language, driving under the influence (of overwhelming lust) and smiting of demons and vamps.
Monday, January 18, 2010
Starting today, my phone and headset will stay in my purse while I'm driving. I will wait until I'm parked to make or return phone calls. I'm not ballsy enough to think I'm talented enough to talk and drive anymore. Just watching one segment of Oprah and listening to one mother talk about finding the mangled body of her child under an SUV was enough for me.
Take the pledge. Make our roads safe again.
Thursday, January 14, 2010
Me: Hey, we should get Nyx a miniature donkey!
Dave, pointing at Bosley: We already have one jackass in this house. We don't need another.
2. My yahoo addresses were sending out trashy spam. I didn't know this until just a few days ago because I rarely check those addies. I seem to have picked up some random virus from a writer's group. If you received one of these messages, you might want to run your antivirus and malware software. Maybe change your email password.
3. Walgreens on Rock Prairie can go to hell. No, really. I have never had such a hard time getting a prescription refill. It's for the kiddo's propranolol. It has to be compounded or ordered specifically in the 20mg/5mL solution. She seems to be the only person in town who takes this version of the med because the pharmacists lose their effing minds every time we call to have this 'scrip filled.
This time takes the cake. Dr. Patt's office sent the refill last Wednesday and I confirmed later that afternoon. Dave called Sunday to make sure it was ready. I received an automated call telling me it was ready. I stopped by on Monday afternoon--and it wasn't ready. While I waited for the pharmacy folks to sort out the screw up, I got to listen to some old crone complain about her hemorrhoids and H1N1 injection site while another guy whined about his kidney stones and wiener pain. Awesome!
I was assured the 'scrip would be ready Tuesday morning. I hit the drive-thru on Tuesday at noon--and was told the prescription wouldn't be ready until Friday, at the earliest.
What. The. Flying. Fuck.
Me to Pharmacy Dude: You might want to pick up that phone receiver because I don't think you want the rest of the customers to hear what I'm about to say over the speaker.
Pharmacy Dude hastily complied. I proceeded to lose my everlovin' mind. It would be one thing if this was some stupid heartburn medication or something but Nyx needs this medication. The propranolol relaxes her pulmonary artery enough to allow blood to reach her lungs. Without it, she'll croak. This is why we fill this prescription 7-14 days before we run out of doses.
In the end, it worked itself out--but not before I nearly blew a pupil.
4. Speaking of assholes! Pat Robertson, shame, shame, shame on you! Blaming a catastrophic earthquake on some supposed pact with the devil in the 1700s is ridiculous and disgusting. You, sir, are a douchebag.
5. The situation in Haiti makes me sad. :(
6. I still want a miniature donkey.
Tuesday, January 12, 2010
Secondly, Dr. Fraser's office called yesterday to schedule the kiddo's open heart surgery. We head down to Houston on the 16th of February for a detailed echo (Nyx will be sedated for it) and a meeting with one of the staff cardiologists. On the 17th, Nyx will be admitted to the 15th floor (cardiac ward) and undergo all of her pre-op tests and procedures. She'll be wheeled into surgery early on the morning of the 18th.
After her open heart procedure, Nyx will spend 7-10 days in the CVICU, Cardiac Step Down, and then just the cardiac floor. We will likely spend another week in Houston after her discharge from TCH.
Dave will probably go back to work once Nyx is out of the CVICU. It's not really a money issue but more Dave's nerves. He's impossible to be around when he's stuck in one place for too long, especially some place as busy as a hospital. No, really. He gets all grumpy and grrr. It's definitely one of those "Don't Poke the Bear" issues.
I'll be at TCH from February 17th through Nyx's discharge and then a further week in Houston somewhere. (We're working out the details.) By the time the kiddo is on the 15th floor for Step Down, we'll have a private room so I won't have to worry about safety and such. Dave will be with me when we're doing the daily shuffle between the Ronald McDonald House or the 17th floor waiting room.
Mom and Dad have rented a space for their camper at one of the upscale RV parks serving families seeking treatment in the Texas Medical Center. Dad will have to head back to New Mexico after a few days but Mom will stay from the 16th of February through the 28th. Where she'll go after that is still up in the air. Probably our house since she's offered to stay with us once the kiddo is released from the hospital and is able to come home. We'll definitely need the help.
Layna is such a sweetheart! She's agreed to look after Bosley. Actually, strike that. She's a saint. Bosley can be such a turd. Only a saint would take him on. Layna didn't even hesitate when I asked. Best Friend of the Year Award Nominee? Uh, yeah.
So anywho. Dave and I are nervous and stressed but we're trying to be positive. Soon Nyx will have a fixed ticker. Barring the need for a pacemaker or another valve replacement, she shouldn't need another surgery for at least, oh, ten years or so. Maybe more.
Because the 16th is the last night we'll have our little family together with any sort of privacy, Dave and I chose to splurge and reserve a nice suite in a downtown Houston hotel. It will be nice to have Nyx to ourselves for that night because for the following two weeks, we'll have to share her with nurses and doctors and surgeons. It'll also be the last night Dave and I will be able to sleep in a real bed for weeks. Might as sleep in style, eh?
Saturday, January 09, 2010
1) Check Hot Coupon World for a look at the upcoming coupons. If they look good, I'll tell Dave to pick up a paper or two or three.
2) If I miss the paper because we forgot to hit up or couldn't get out to the store, I hit up various online coupon printing sites. Sometimes I visit The Coupon Master and order what I need. On this site, you order coupons in multiples of three for eight or so cents a piece. Even if I spend, say, six or seven dollars on a stack of coupons, I easily save that on my shopping trips.
3) I scour the ads for my favorite stores online and match my coupons to sales. I also use sites like Money Saving Mom, Hip2 Save, and For The Mommas to plan my shopping lists now that I don't have as much free time to devote to deal scenarios.
4) I create two week menu plans consisting of breakfasts, lunches, dinners, and snacks based on the Insulin Resistance Diet or The Mediterranean diet built around the weekly sales on meat and produce. On very rare occasions, I'll pay full price for a specific cut of meat if Dave and I really want something specific. Dave brown bags his meals at work.*
Once I have my grocery list together, I take a look at our pantry and toiletry stockpiles. I then see what CVS, Walgreens or Kroger are offering on sale. When it comes to pantry or toiletry stockpiles, I have a few rules.
1) Never pay full price. Hell, most times I won't buy something unless I'm getting it for fifty cents or less. Yes, I buy toothpaste, shampoo, conditioner, tooth brushes, and shaving cream for fifty cents or less--often for free. I'll spend up to three or so dollars on toilet paper, razors, deodorant and lotions. Most of the time, I get things for a buck fifty or less. And, no, this is not off brand or generic stuff.
2) I only buy convenience foods if they're free or almost free. For instance, my pantry is stocked with boxes of Kraft Mac n Cheese, Betty Crocker yummies of all varieties, Bisquick, Fruit Rollups, Campbells Soups, French's Mustard, Pace Picante, Knorr's Noodles (Alfredo and such) and other similar foods that I was able to stock up on with coupons and sales for free or a couple of dimes. No, really. How?
Say Kroger has French's Spicy or Honey Mustards on sale for 2/3. I have two fifty cent off of one coupons. My Kroger doubles coupons up to fifty cents. I just bought 2 full-size French's Mustards for a buck or fifty cents each. Woohoo!
3) CVS ECBs rock! Extra Care Bucks are the awesomeness. Seriously. So the other day I bought nearly $70 worth of toiletries, juice, light bulbs and more for $37 after coupons. On top of my thirty plus dollars of savings, I earned $14 worth of ECBs. I will combine those ECBs with sales in the upcoming weeks to create more ECBs and to buy Gillette razors or cartridges or Old Spice stuff Dave likes for nothing out of pocket.
No, really. Once you make that initial investment at CVS, you can roll over those ECBs when you buy products you need that also earn ECBs. Last year, I did this once and used, like, $20 worth of ECBs to fund my stockpiling for six or seven months. Only when the kiddo came and I got out of my couponing habits for a few months did I use up those ECBs without replacing them.
I'll be honest. This kind of committed couponing and home cooking takes some effort. In our case, though, we don't have much of a choice. Before Nyx, Dave and I were frugal because we chose to be. We liked paying off all of our debt and saving money. And thank God we did! If we hadn't saved three or so grand on top of paying for all the baby stuff, obstetrician fees and such, we would have been screwed when Nyx ended up in the NICU and then TCH because Dave wasn't working for a month.
But because we live like no one else (thank you, Dave Ramsey!) we were able to be at our baby's side night and day instead of worrying about how the hell we were going to pay the mortgage (we always keep one and half extra mortgage payments in the bank on top of our savings,) buy food or gas. We were able to eat out of our pantry in December to free up enough cash to pay off a shit load of the kiddo's bills. My royalties helped too. Not that much because contrary to what you might hear, authors don't earn a living wage. I'm not joking. Some kid sewing clothes in an Indonesian sweatshop makes more than me per hour.
But I digress.
Once you get started and figure out how to work your local sales to your advantage, it becomes a game of sorts. I guarantee you'll get a nifty little high every time you snag something for free or almost free! Give it a try for a month. You might get hooked!
In the coming week, I'm going to revamp this blog and include links and posts for great money saving deals. Stay tuned!
*We got out of this habit for a few weeks because of the kiddo's arrival and the craziness that followed but we've returned to our old ways now.
Thursday, January 07, 2010
Since it was my bi-monthly coupon run, I had to do the shopping. I did really well though! At Kroger's, I bought $210 worth of groceries and pantry stocking stuff for just around $140. We'll only need to buy meat, milk, and produce for the next, oh, four weeks or so. At CVS, I bought $70 worth of stuff for $37 and earned an additional $14 in ECBs. That works out to, like, $23 out of pocket. Woohoo!
Dave has to work today. I offered to knit him a cozy for his, um, family jewels since the wind chills are supposed to be in the single digits. He politely declined. Got me thinking though. I bet I could sell a crap load of ball cozies on Etsy!
Kidding. I'm kidding.
Anywho. The kiddo and I are hanging out upstairs today. For some reason, it stays much warmer up here than downstairs. (I think it's the number of windows down there and the proximity of the heater to our bedroom and man cave.) She got a new play mat from Aunt Romona so we'll try that out today for tummy time while I do my crunches and such.
Oh, and here's your WTF moment from yesterday. Nyx went in for her Synagis injection, right? She weighs 11 pounds (yay!) so her dose of medication was .75 mg. Yes, that's point seven-five milligrams dissolved in maybe two milliliters of injection solution. Want to know how much that .75mg of Synagis cost?
Yes. Five thousand four hundred forty-six dollars for less than one milligram of medication. OMGWTFBBQ!
Friday, January 01, 2010
Mom, Dad, and Tricia are in town with us. They came bearing Christmas gifts and yummy barbecue from Llano. Nom. Nom. Nom. Last night, Mom made appetizers and Dad fired up the grill. We chowed down and played with the kiddo all evening. It was laid back and nice.
I hope you and yours had a wonderful New Year's Eve. In the ever so poignant (ha!) advice of the Wyld Stallyns, be excellent to each other this year!