Friday, February 26, 2010

Vote Aqui

So Dave and I hit up the early voting polling place this afternoon. We'll be gone during the actual primary so this was our last chance. I wasn't all that gung ho about voting this year. I've had it up to here with those effing political ads. Last night during the local news Dave and I were subjected to 17 different ads. Back to back to back. UGH!

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

Milk Maid

Just today I realized Nyx will be 6 months old the morning of her surgery. I also realized I've been breastfeeding that entire time. I'll be honest. I'm stunned I made it this long.

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

Back To Houston

Well we have a new surgery date. Tuesday. Yes, this coming Tuesday, March 2, 2010. After being told yesterday it would be the end of March before they could work us back into the schedule.

So now I get to pack the bags I just unpacked. Yay!

Monday, February 22, 2010

Sick As a Dog

Oh, man, have I been sick! I started feeling icky on Tuesday evening at our hotel. I thought it was probably just nerves and stress and didn't think much of it. By Wednesday evening, I was so nauseated and sensitive to smells. My first thought was a whoopsie baby. I mean, I nurse every two to three hours and am on the combo Pill (not POP) but anything's possible, right?

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

Dry Run

First, thank you to everyone keeping our little pumpkin in their thoughts. We realy appreciate them.

So Nyx's surgery was 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

Grim Reality

Lately people have commented on how well I'm handling the baby's upcoming surgery. I'll let you in on a little secret. I'm not actually. I am struggling something fierce. I'm stone cold petrified. Every night for the last two weeks, I have cried in the privacy of our walk-in closet. My stomach is in knots and I am having the worst nightmares imaginable.

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

Unrequited Love

So Nyx has discovered Bosley. I mean, she's always been aware of him but in the last few weeks, she's become hyper-aware. She watches him so intently. Every yawn, lick, scratch and stretch. It's almost like Jane Goodall studying her chimpanzees.

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

Write Your @ss Off Day!

So this weekend (2/5-2/8) is Write Your @ss Off Weekend. The idea is to put in a full eight hours of writing or writing activities (research, for instance.) Dave-O's four days off coincided perfectly with this event so I am finally getting some quality work done.

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


Over the last few months, Dave and I have been touched by the kindness and generosity of our family and friends. The outpouring of emotional support really helped us through those first few weeks. There were days there where it was really hairy and we didn't know what was going to happen. Knowing our family and friends were there for us, sending out those positive vibes, gave us that extra little push that kept us going some days.

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


Today was one of those days where I wished I'd taken up yoga or some kind of meditative exercises years ago. A little relaxed breathing and "om" would have gone a long way this morning.

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...