Why We Need Health Care Reform, Part 1

Keeping in mind that I have what is considered to be excellent health insurance, for which I pay almost $1000 per month for myself and the babies, not counting my husband’s coverage…

Because the Burrito and the Tamale were born prematurely, they are at higher risk of problems from RSV. There is a drug which prevents RSV for one month at a time, Synagis. It costs about $1000 per child per dose. The full course would be about 5 doses for the entire RSV season, totaling $10K.

The neonatologist and the pediatrician each applied for Synagis for both babies. Both doctors felt that the insurance company would approve a maximum of 1 or 2 doses, because of the high cost and because the babies are only at moderately high risk.

The insurance company has approved 0 doses.

In the rejection letter, the insurance company states that for babies born at this gestational age, approval would require two additional risk factors (the American Academy of Pediatrics sets the bar lower at one additional risk factor). Risk factors include having a sibling under 5 at home (each baby has his/her twin, which counts); attending daycare; and having a smoker in the home.

If I decide to take up smoking, the insurance company would pay for the drug.

I understand how the actuarial system works, but c’mon. Talk about penny-wise pound-foolish.

Stay tuned for Part 2. It gets more absurd.

Edited to add: We can’t afford to pay for the drug ourselves. The neonatologist says no one pays for it themselves. So, we’ll take as many precautions to shield the babies from RSV as possible, but ultimately we just have to hope for the best. RSV is the #1 cause of re-hospitalization for preemies; one day of hospitalization costs more than the drug would have cost the insurance company. They’re rolling the dice, and so must we.

Perfect Moment Monday: Repurposed

When the Burrito had his bris, the moyle gave DH a list of supplies we needed to help him recover. With a house full of guests, DH came running to me and declared urgently, “I need to go to the drugstore before it closes.”

He didn’t need to go to the drugstore.

Baby Tylenol? I already had it stocked.

Petroleum jelly? I have Aquaphor, which is supposed to be superior to Vaseline for babies.

Gauze pads? No way we had gauze pads, right? Wrong! I had them tucked away in a bag in the bottom of my closet, along with a sharps container, alcohol swabs, and over a hundred syringes and needles. Leftovers from IVF #2 and Perfunctory IUI #7 (the one that produced the Burrito and the Tamale).

It was tremendously gratifying to be able to help the Burrito with the vestiges of old pains.

Who would have thought that infertility would ever come in handy!

See some other Perfect Moments at Weebles Wobblog.

Thoughtful Thursday: Experience

(Note: Pregnancy and babies discussed.)

In addition to breastfeeding difficulties, the other big component of the hard time I’ve been having is some sort of hormonal baby blues. Much of the time I’m fine, but every few days for a few hours I’m not fine at all.

Right after giving birth it was more obviously hormonal, and I’d burst into tears at the slightest provocation. For example, almost any song. Or a particularly nostalgic Sesame Street clip on YouTube. (Seriously, when that happened, I knew I’d totally lost my mind.)

After the first week, there has been less crying. Instead, I either feel fine, or I feel desperate and forlorn. Thankfully, much more of the former than the latter. The main things that have been setting me off have been:

• Breastfeeding difficulties
• Being overwhelmed, generally by my inability to manage more than an hour of work per week or by dealing with two screaming babies on my own (which rarely happens — the alone part and the both screaming part — but oh boy, when it does…)
• And, shockingly, thoughts of pregnancy

Before becoming pregnant, I wanted to have biological children but pregnancy itself wasn’t that important to me. When I was finally pregnant, I was so thrilled that I cherished every moment I could; even the difficulties like debilitating fatigue and hospitalization were special in their own way. Both before and during pregnancy, I reserved the right to consider additional children later.

Now, simultaneously I want nothing to do with future pregnancies or children and I also burst into tears mourning the absence of those pregnancies and children. Pregnancy kicked my ass, birth almost killed me, and I can’t even manage the two children I have. I have no business trying for or having more children — if I could even get pregnant again, which is almost impossible without treatments, which we’ve sworn never to do again. I’ve shed more than my share of tears over BFNs. TTC turned my life upside down for 7 years. Yet…

The yearning hits me at random times. Tidying up papers and finding an ultrasound photo, and realizing that I’ll never have a 3D ultrasound image of any baby because the Burrito and the Tamale were never in the right positions in the womb. Watching one of them move their legs now, thinking about how the kick would feel if they were still inside, and realizing that I’ll never feel another fetus kick. Jiggling the jelly that is my new abdomen, and remembering my beautiful pregnant belly. Looking at my now full-term babies (39 weeks gestation!), and wondering how it would have been to carry a baby anywhere close to full term, to hold that baby right away instead of touching it for a minute through a window in an incubator, and to go home with that baby instead of spending weeks in the NICU.

I think what gets to me most isn’t that I won’t experience these things again (or for the first time).

What gets to me is that I don’t have the option.

Most of the time now I couldn’t be happier, but sometimes I couldn’t be sadder. Who knew.

How important was/is the experience of pregnancy, as opposed to the baby itself, to you?

Thoughtful Thursday: Quitter

Welcome to November. Wow, what an October I had. Anyway, here are the Intelligentsia (people who have commented on every Thoughtful Thursday post for the month of October).

Wiseguy from Woman Anyone? still holds the record with 10 out of 10 Intelligentsia appearances.

Close behind is Ernessa from Fierce and Nerdy, back for the 7th time.

Photogrl from Not the Path I Chose makes her 6th appearance.

Jules from Just Multiply by 2 and Lost In Translation from We Say IVF, They Say FIV are both four-peating.

Two-timers include Elana from Elana’s Musings, Mel from Stirrup Queens, and Stacie from Heeeeere Storkey Storkey.

(Discussion of infertility as well as baby issues ahead.)

I’m a big advocate of cutting losses. People tend to stick too long with things that just aren’t serving them well. For example, spending more on car repairs than the car is worth, or staying in a bad relationship because of all the years you’ve already invested. You started eating a cookie and you don’t like it? Throw the rest away!

Simultaneously, I refuse to be a quitter. Sometimes I take on challenges that are beyond me, then I have to keep going until I’ve seen them through. Household repairs, for example — I don’t even enjoy them, and in the four hours it took me to do that plumbing repair, I could have earned enough to pay a plumber to do it in half an hour.

Or, to use another example, infertility. I never got close to that point, but I think that if treatments hadn’t succeeded when they did, I would have kept going with IVF cycles until I ran completely out of money, the physical ability to continue, or time.

Now I am faced with a similar situation. A few days ago I alluded to having had a hard time lately [and many people were kind enough to comment or email with support, thank you]. There’s a lot of things contributing to it, but probably the biggest one is breastfeeding.

Put simply, breastfeeding is not going well.

Right after birth, I couldn’t nurse for quite a long time because the babies weren’t able to feed by mouth. Then, once they could start practicing, their level of prematurity meant that nursing did not come naturally to either of them. Tamale has nursing down quite well now, but for a long time her little cheeks got tuckered out very quickly. Burrito’s problems have improved but still continue even now that he’s in the full-term range. I love that little guy with all of my heart, but nursing him is not my favorite time together: biting, blocking his mouth with his tongue, and flailing his arms for several minutes each time before he can nurse properly really pushes me over the edge sometimes.

The biggest problem, however, is my milk supply. The culprit, apparently, is losing almost half of my blood volume during delivery. Plus, who knows if I ever would have had a full supply — many women can’t make enough for two babies, and some women’s bodies never make enough milk for even one baby. Sometimes I do everything right and pump every 2-3 hours. Sometimes I get frustrated and pump just a few times in a day. Either way, the amount of milk doesn’t seem to vary. I’ve seen many lactation consultants. I’ve tried fenugreek, which doubled my supply — but 2 times a tiny number is a slightly less tiny number. I’ve tried power pumping, which doesn’t seem to trick my body into making more milk the way it should. Nursing the babies directly doesn’t seem to make a difference, so at this point almost all of their feeds are by bottle, either formula or, once a day, pumped breastmilk. I produce enough for about 5% of their total intake. The only possibility left is to try to increase supply using strong drugs, but my emotional functioning is already so tenuous that I’m afraid I couldn’t handle the side effects.

I believe strongly in breastfeeding, for all sorts of reasons. I always envisioned that I would nurse for a long time (and that it would be idyllic, like people say). I’ve long ago given up on the hope of exclusive breastfeeding, and I’ve accepted that it’s not always fun, but pumping nonstop to yield only 5% is really frustrating. Several people have suggested that I give up, reclaim those many hours a day, and spare myself the heartache.

But, right now, I can’t. My body took so many years to create them, and my body couldn’t gestate them as long as I wanted, can’t my body at least feed them? Plus, I’m too wedded to not being a quitter. I should know better. I should be willing to cut my losses. Right now, I am stuck. My head and my heart both want to continue, but my head and my heart also both know that I should move on.

At some point, perseverance becomes stubbornness.

What are the limits of your perseverance — with family-building or with other realms of life? How much do you value not being a “quitter”?

Perfect Moment Monday: Backdrop

Remember way back to February when I was about to embark on Perfunctory IUI #7 in preparation for IVF #3 and, to honor the occasion, I purchased a piece of abstract artwork depicting Don Quixote? Or the next month when I was in Quixote’s homeland and couldn’t resist a Quixote sculpture, having just become pregnant via a treatment that wasn’t supposed to work? The drawing and sculpture are on display together in my house, and I look at them many times a day.

The Perfect Moment occurred when I was taking some photos of the Burrito in his father’s arms, and I realized that, just by happenstance, the two Quixotes formed the backdrop. (Child pictured; click through to see the photo.)

I’ve been having a bit of a rough time lately (more on that soon), so the reminder is particularly poignant: He and his sister are my Impossible Dreams come true.

Thoughtful Thursday: Stickler

By nature I am a detail-oriented person, and I take a lot of care with every kind of detail. I am well aware that not everyone else is so concerned with precision. When other people make an error, sometimes I can be quite a stickler, and sometimes I let things go. Strangely, the issues that get to me the most aren’t necessarily the ones that matter the most. Here are some examples.

Perpetual stickler:

• My name. My real name is impossible to spell and pronounce, and I have spent far too much of my life correcting people. The only times I let people use the wrong name are when I’m about to never see them again, as when my order is ready at Starbucks. Otherwise, I just can’t let it go. When I first met DH, he mangled my name, and I was so intent on correcting him that he thought I couldn’t stand him, and our relationship almost never got off the ground. Good thing we worked that out.
• Misinformation. Especially as it pertains to my profession, there are issues that I just can’t let slide when I hear someone say something horribly wrong. I try not to be bossy and know-it-all, really I do, but sometimes I can’t help myself.

Sometime-stickler:

• In the hospital both pre- and postnatally, the babies’ conception came up frequently. Quite a few times, a health care worker stated that the babies were conceived through IVF rather than IUI. Sometimes I was careful to correct them, when it seemed like the misinformation might make its way into the chart or otherwise stick around. Other times, especially when it was one practitioner talking to another rather than to me, I bit my tongue.
• Also on the topic of fertility, sometimes I hear people say outlandish things about infertility problems and treatments. Sometimes I feel the need to educate them, and sometimes I shrug and move on.
• The name of this blog. There is no “the” in the name. As I explained when I first started blogging, the blog name is a line in a Radiohead song. I realize that it doesn’t look quite right unless you know the song. I’ve seen lots of people add a “the” in their blogrolls, links to my blog on their blogs, etc. Occasionally I send someone an email with a friendly correction, but usually I don’t say anything because I don’t want to go around the blogosphere bossing people around. (But, if you have the name written wrong somewhere on your blog and now you would like to correct it, that would be lovely.)
• “Are these your first?” As in, “Is this your first pregnancy?” or, other times, “Are these your first children?” To health care workers, I carefully explain my two miscarriages. To everyone else, I evade the pregnancy part of the question and simply say that these are my first children.

Non-stickler:

• Tamale’s name. Burrito’s name, like the word burrito itself, is rarely mispronounced or misspelled. Tamale’s name, like the word tamale, has a few potential proper pronunciations (such as ta-MAH-lay and ta-MOLLY…) and many more mispronunciations (TA-muh-lay, TA-mail, ta-MAIL…). When I chose her actual name long ago, I had no idea that people would consider it as exotic as they do, and I had no idea that anyone would think to pronounce it any way other than the “right” way. Already in her short life, I have heard an incredible number of guesses as to the pronunciation. So far, I have been saying it properly to each person once, and then letting any subsequent mispronunciations go. As she grows up, I don’t want her to have the same visceral reaction to hearing her name misspoken that I do for my name, and I don’t want her to have to waste so much effort making people get it right. So what if a restaurant hostess or substitute teacher doesn’t say it right? I certainly don’t want her to be such a stickler about her name that she risks shooing away her future husband like I almost did. Some things are more important than the details being exactly right.

When are you a stickler? When do you let things go?

Thoughtful Thursday: Partner

As I mentioned in last week’s BBBB post, one of the biggest surprises since the Burrito and the Tamale were born has been the changes I’ve seen in their father.

Normally, DH is a highly emotional guy — mostly when it comes to unimportant things. When he watches sports on TV, his yelling has been known to send pets and neighbors running for cover. He shows uncommon enthusiasm in response to new flavors of ice cream and sunny days. Don’t even get me started on what happens when he sees a puppy.

In terms of negative emotion, he is usually very even-keeled. He gets worked up over abstract issues like government encroachment on civil liberties, but if something unpleasant happens to him personally, it’s like water off a duck’s back.

He is fiercely loyal and effusive when it comes to me and his friends, but less so with family.

His high levels of energy and emotion have made it all the more bizarre that over 7 years of infertility, he was almost always calm to the point of being blasé. He’d get riled up about the money or about minor inconveniences, but the big picture didn’t seem to bother him the way that it got to me. There were hints, but, like the physical toll of the treatments, most of the emotional toll seemed to fall on me.

During the pregnancy, he was phenomenal as far as helping me during the months of 1st trimester immobility and 3rd trimester home and hospital bedrest. But, when it came to the babies, I was disappointed at his lack of enthusiasm. The correct response to, “Do you want to feel the baby kick?” is “Yes!” Instead, he often answered, “I guess,” or even, “No thanks, not right now.” Instead of cooing at cute baby items, he questioned the cost. During every minute of each ultrasound my eyes were as wide as a kid’s on Christmas morning. Being in a dark room for an hour made DH sleepy.

I didn’t question what kind of father he’d be nor the kind of husband he’s been all along, but, during a supposedly happy time for which we’d worked so long and so hard, I found his reactions (or lack thereof) disheartening.

And then the babies were born, and all of the emotion burst out. Not the screaming-at-the-TV emotion, but the sweet, joyful, loving emotion that I fell in love with, a decade and a half ago. He marveled at the Tamale’s resemblance to me, chuckled at the Burrito’s antics, told them sweetly about the cat waiting for them at home, made up songs to sing to them in the NICU.

When I pointed out the contrast between his pre- and post-birth reactions to the babies, DH said, “We weren’t counting our chickens before they hatched. I didn’t want to get too attached. Now they are here, and I can love them.”

When I pointed out the contrast between his effusive reaction to the babies and his stoicism during infertility, he said, “Infertility was depressing! If I’d showed emotion then, it would only have been bad emotions.”

7.5 years of DH’s guarded emotions during IF and pregnancy in exchange for singing and dancing through the house for the next couple of decades? Not a bargain I expected to make, but I’ll take it.

How has your partner reacted to infertility/loss? Is this consistent with your partner’s typical style of emotional expression?

Show and Tell: Delegation

Goodbye NICU and hospital that I’ve inhabited since August; hello home!

For Show and Tell, I present the delegation that showed up to welcome the babies to our home:
A doe and twin fawns.

See what else Miss Lollipop’s class has to Show and Tell.

Thoughtful Thursday: Emotion

Quick health/baby update before we begin Thoughtful Thursday: I am feeling better and better every day; the percentage of the day in which I feel Human has gone from 0% for several days post-birth to 80% today. The Burrito and The Tamale are developing incredibly well — so well that we’ve been discussing discharge with the NICU team. Looks like just a few days until they come home!

Today’s topic follows from a question I submitted (and then subsequently answered myself) for this week’s Barren Bitches Book Brigade on It Sucked and Then I Cried by Heather B. Armstrong of dooce.com. Since only a few people participated in the book club, I’d like to open the topic up for discussion more broadly.

On your blog, how much emotion do you express? Is that more or less emotion than you tend to express in real life?

From my BBBB post:

In real life, I am very guarded with emotional expression. On BabySmiling, I am considerably more expressive.

For years I have enjoyed Dooce’s monthly newsletters about her daughter. They combine snapshots of Leta’s growth, snarky humor, and pure love. I think that I will be comfortable expressing emotion directly to my children, but it feels strange to think of writing emotional public newsletters under my real name for friends and family (and strangers) to read. Do I save the emotion for BabySmiling, even though it goes against the mandate of the blog as an infertility blog? Do I write the letters privately? Do I remain guarded and let the emotions go undocumented? Probably not the latter, but I’m still figuring this one out.

To elaborate on what I wrote earlier this week…

I have never felt more emotion than in the past couple of weeks. Part of it is attributable to fluctuating hormones, sure. Some is attributable to having babies, the same as anyone. But a big part has to do with the realization of 7 years of infertility plus months of more-difficult-than-usual pregnancy. I am so filled with love, but there’s also a good measure of disbelief, overwhelming retrospective sorrow, hope, worry, wonder… And there you go. I am expressing emotion here on this blog. Emotions which most likely will never be expressed anywhere else, certainly not in writing.

I just don’t see myself writing gushy love letters to my babies under real name for my friends and — gah — family to see. But I am feeling that gushy love, so where do I put it? Here, where I never set out to mommyblog? Some sort of BabySmiling annex? Privately, for only my babies to see someday? I didn’t have an answer on Tuesday during BBBB, and I don’t have one today.

On your blog, how much emotion do you express? Is that more or less emotion than you tend to express in real life?

Barren Bitches Book Brigade: It Sucked, and Then I Cried

Welcome to the Barren Bitches Book Brigade, featuring It Sucked, and Then I Cried by Heather Armstrong of dooce.com.

(Note: pregnancy and children mentioned.)

If you are in a relationship right now, do you relate to how Heather talks about her husband, Jon, and what a great father and life partner he is? From what she described about Jon, what qualities do you have or want in your life partner?
I truly have the best husband ever, in a thousand ways that I don’t currently have the mental wherewithal to enumerate.

Here is an exchange we had today which illustrates why he is so fantastic. Before this conversation, I was very grumpy from spending the day with an unpleasant NICU nurse plus physical pain.

DH, cheerfully: The babies would have been 35 weeks today.
Me, zombie-like: Oh, I forgot it’s Tuesday. Tuesday used to be the special day. Now Saturday is the special day, because they were born on a Saturday.
DH, almost jumping up and down with enthusiasm: Now that we have babies, every day is the special day!

And then I burst out crying. And then he hugged me, while driving.

I have only watched him as a father for a week and a half, but already he has surprised me so much, all in good ways. I need to write a separate post about the changes I have seen in him — stay tuned.

Heather obviously has a very distinctive writing style that comes across in both her blog and her book. What do you think has made Heather such a famous blogger? Her writing style, honesty, or something else? Do you write with the same passion and honesty that Heather does?

Dooce is many things to many people. My husband mostly cares about the pictures of Chuck and Coco, her dogs. I often enjoy her Daily Style feature and her photography, but the big draws for me are her humor and her posts about parenting. Our personalities are clearly very different, but I think I write with as much passion and honesty as I have to give.

If you had postpartum depression to the degree Heather describes, would you have the courage to check yourself into a psychiatric ward? (It’s hard to say when it’s not actually happening in your own life, but I’d be curious to know if there are some people who are completely against it, some who would do it if they felt there was no other way, etc.)
I’d like to think so. I’d also like to think that I would nip it in the bud more, rather than letting the problem get that severe. In the past week and a half, when I’ve been more emotional than usual because of post-birth hormone changes, my husband has been quick to point out the contrast between that and my usual logical self. If I were to develop severe depression, the further I got from myself, the more I think he’d try to help me pull myself back in.

Heather Armstrong writes candidly and unapologetically about all aspects of her life – the good, the bad and the ugly. What, if anything, in your life that would you like to be as unapologetic about? What’s the first step you could take? What’s holding you back?
Infertility, of course. I’ve already taken the first step: since giving birth, I have straightforwardly explained the babies’ origins whenever anyone has asked whether twins run in the family (which is surprisingly often, given that I haven’t talked to anyone outside the hospital). Strangers are becoming easy, but telling the truth about infertility to friends and family is another hurdle entirely. I honestly don’t know if I’ll ever get over feeling like it’s just none of their business.

The author’s blog is well-known for her biting sense of humor, interspersed with expressions of deep emotion toward her children and husband. Although there was plenty of humor, I found the book to be much heavier on emotion than I expected based on reading her blog. On your own blog, how much emotion do you express? Is that more or less than you tend to express in real life?
This was one of the questions that I wrote. Heather Armstrong offers such an unusual combination of sarcasm and raw emotion. In real life, I am very guarded with emotional expression. On BabySmiling, I am considerably more expressive.

For years I have enjoyed Dooce’s monthly newsletters about her daughter. They combine snapshots of Leta’s growth, snarky humor, and pure love. I think that I will be comfortable expressing emotion directly to my children, but it feels strange to think of writing emotional public newsletters under my real name for friends and family (and strangers) to read. Do I save the emotion for BabySmiling, even though it goes against the mandate of the blog as an infertility blog? Do I write the letters privately? Do I remain guarded and let the emotions go undocumented? Probably not the latter, but I’m still figuring this one out.

Whatever I do, I certainly appreciate the precedent that Dooce has set, in terms of non-maudlin emotional expression as well as acknowledging the hard work of belonging to a family.

The author talks about how she imagined her future children before becoming pregnant:

When you’re childless and young and hopeful, you have this idea of what your children are going to be like, and you make mental notes when you see other kids in public. You say to yourself, “My kid will be cute like that,” or “My kid won’t ever throw a tantrum in public like that little demon.” I had always envisioned a sweet little princess who looked just like me sitting quietly in a high chair, her pressed velvet petticoat creased perfectly as she sat and waited to be handed things in a timely manner. And then you grow up and have kids and realize that YOU HAVE NO SAY…

Before starting to try to conceive, how did you imagine your future children? If you now have children, how did your expectations fit reality?
This was the other question that I contributed. When I wrote it I had not yet given birth, and now I have. I don’t know much about my babies yet, but I certainly know more than I knew a couple of weeks ago. I really had no idea how they would look; it turns out that one of them looks so much like my husband, and one of them rather looks like me. One has hair color and features that I didn’t think could happen on a child of mine. One seems to have their father’s temperament, and one mine. Between looks and temperament, each of them has some of him and some of me. As for the rest of it, I’ll have to get back to you in a few years.

In terms of imaginings, I’ve mostly envisioned my children having the kinds of traits that would enable me to engage in activities like museums and world travel with them at a young age: intelligence, patience, curiosity, gentle demeanors. DH likes to say that it will depend on whether they are “his” children or “my” children. If they take after me as a child, by age 7 they will be leading the way through the Louvre, floor plan and guidebook in hand. If they take after him as a child, they will never make it inside the Louvre and instead will gather a crowd of Parisian children into impromptu game of tackle football in the Jardin des Tuileries. Hey, either way, Paris is Paris, right?

Hop along to another stop on this blog tour by visiting the main list at Stirrup Queens. You can also sign up for the next book on this online book club: The Phantom Tollbooth by Norton Juster.