Monday, December 28, 2009

The Anthem who stole Christmas

A week before Christmas we learned that our out of pocket (OOP) was to jump from 5K in '09 to 10K in '10 (how convenient of the insurance company to coordinate deductible with the year). The premium, increased something like $1 per pay period, which puts us squarely at $800/month for a total of $19,600 OOP for the upcoming year.

Health insurance is a major problem in this country. And I am thankful that it has been front and center of the national debate and media for the better part of a year now. But we still have a ways to go, and perhaps the for first time ever, I envy those living in Europe and Canada. Mothers who have heart kids of their own, who encounter virtually none of the financial fall-out that we are going through. Mothers and Fathers who undoubtedly are less-stressed and who are not bogged down with fights with their insurance companies. And as far as I can tell, their kids receive the same treatments and fare just as well as their American friends living with the same anatomical deformities.

The American Dream dissolves into the American Nightmare.

Every parent's wish is to have healthy children. Through the advances of medical technology, I feel we have that with Luna. It's the insurance costs that is killing us.

Take this scenario (a totally fictional account created for the sake of this argument):

Suppose you were working at a company with roughly 100 people. The company is about 50/50 split between men and women, and about 65% of the company's employees carry insurance for their entire family.

Of that 65% one woman had a baby via c-section, one family learned their teenage daughter had a rare bone cancer, and one family has a baby who, in one year alone endured 2 open heart surgeries, 2 catheters, and 2 sedated echo cardiograms.

This December the HR gal begins her dreaded and laborious task of re-upping her health insurance contracts. Of the five companies she calls for rates, the only one who will return her call is the same carrier she is dealing with now. Sure, they say, we'll insure your company. But for 2009 we where upside down 130% so we're going to double your employees out of pocket for 2010.

Now, would anyone like to tell me how this story will end, when in 2010 we *know* the heart baby will incur another 1/4 of a million in claims for her next open heart surgery, cath and sedated echo?

The entire company not insurable? Nonsense you say! But isn't what these free-market zealots wail about? "Let the markets correct themselves, let competition rein!".

Ah-huh. Except for that tiny detail that everyone seemed to forget: you cannot negotiate your health. And you cannot leverage a human life.

I love business and am currently growing one devoted to cultivating and advocating for the creative industries. I love, love, love the thrill of the negotiation. Negotiation is all about leverage. And faking to the party trying to sell their goods or services that you somehow do not need their goods. Case in point, I recently negotiated ad space. I really did not *need* this full page ad, I wanted it. The 'seller' knew this, both parties know the publishing world is hurting, so I get a great deal for my client.

Or, you want to buy that house, but there's something about it that just doesn't feel right to you. You walk away. In this market you'll find five others-better than the one you just toured. But when you know your kid is going to cost a fortune, and you know that in 2010 she'll endure more medical care than most do in a lifetime; how can you possibly walk away and find an insurance company who will cover that? A company, whose business practices and profit margin are not based upon the services they offer, but rather, on the ones they reject (wow, sounds like a pretty incredible can I run one of those you say!)

So, until we somehow come to grips with the fact that health is not a 'free-market' kind of thing, and every time a health insurance company makes a windfall profit, and your stock spits out another dividend, just remember, that happened solely on the fact that the only way for an insurance company to make that windfall profit is to reject coverage for kids like Luna or, simply not insure entire companies who have one or two medically needy folks on the policy. Oh you say, but isn't that like everyone? Uh-huh.

Tuesday, December 8, 2009

Luna's bi-annual cardiologist check-up.

Miss Luna, 20 months old.

This past Friday I took the girls to Luna's cardiologist appointment. At this stage in her young life, she sees the card every 6 months; and most likely, once she gets older, and has her surgeries behind her, she'll see a cardiologist once a year.

She was weighed, measured and sat checked.

On all fronts, she is doing fantastic. She's now just at the 40th percentile in weight, tipping the scales just past 24 lbs. For height she's 30 inches and her sats are at a nice 85 percent.

I wish I had thought to bring my camera, I think she may have been one of the cutest echo patients (biased, I know:)

Now that she's a big, talking 20 month old; it's easier in that she can communicate her needs to us.

A sampling of the dialog went like this:

Cindy the echo technician:

"Does this hurt?"




"How about this?"


"Nope, it tickles".

This type of repartee went back and forth for some time.

To give you and idea of how long these appointments take, we; Sienna, Luna and I watched the entire movie Aladdin, and then one full episode of Max & Ruby.

The results of the echo were very positive: the LPA (left pulmonary artery), the one that she needed the balloon catheter for, sustained it's 'puff' and is looking great (thus provides nice blood flow into her heart).

Her heart function is good.

And this was a bit of interesting information: we learned her aorta, since she has grown, has more room to 'breathe'. Some background on Luna's aorta: back when we were first diagnosed, we learned that she has a big aorta (never judge someone by the size of their aorta...sorry, really bad heart humor). Well, apparently it was SO big that her little body was squeezing in on it, which in turn could affect her heart function. Now that Luna is bigger, her aorta has more room, which may also contribute to one of the reasons that we're not seeing her sats falling at this point (which normally, due to growth and increased movement in heart kids, you will see sats fall in the year or so between the Glen and the Fontan surgery).

The only big upset of the appointment is that we learned Luna's surgeon took a job at Columbia. We *could* go down to NYC for her Fontan (ha, ha, ha), but we've decided that there are other top surgeons at Children's Hospital Boston who could do the job.

With the Big Appointment behind us, we can now exhale and enjoy the holidays. Luna's next scheduled appearance with the cardiologist will be in April. It will be then that her team decides when she goes in for her third and final repair, the Fontan.

Sunday, November 29, 2009

Double Inlet Right Ventricle

Illustration of a normally-formed human heart.

Drawing of Luna's heart (the two tunnel-looking things at the top that are hard to read say LPA (Left Pulmonary Artery) and RPA (Right Pulmonary Artery)-they are the arteries that feed blood to the lungs and then to the rest of the body.

Yesterday on twitter some fellow CHD parents were looking for a drawing of a double inlet single ventricle. I happened to have one, since that is what Luna's diagnosis is. I then dug-out this description that Luna's cardiologist wrote. I wanted to publish it here so the world could learn better about Luna's anatomy.

Reading Dr. G's description leaves me speechless. I forget-or perhaps keep deep at the back of my mind-how rare and unusual Luna's heart is. What's more amazing about all this, is the kid is perfectly HEALTHY!

"Luna has one single ventricle, and in these complicated cases, it can be hard to tell whether it is a single right or a single left one. Luna is felt to have a single right ventricle. She also has a double inlet- both "AV valves" or inlets into her ventricle enter into the one single chamber, giving her "Double Inlet Right Ventricle", even more rare than Double Inlet Left Ventricle (DILV). She also has dextrocardia- heart in the right side of her chest instead of left- and she also has transposed great arteries, meaning the aorta is in front of her pulmonary instead of behind. However, many single ventricle kids have pulmonary stenosis, but she goes beyond "pulmonary stenosis" (pulm valve has a very narrowed opening) to what she has, "pulmonary atresia" (valve not open at all, or never formed). Luna will undergo the same surgeries as many other single ventricle kids to re-route blood flow."

Thursday, November 5, 2009

My conversation with Joe Lieberman's office.

The other night, while watching the election coverage, (Rachel Maddow), a particular statement nearly knocked me off my couch. The anchors were going back and forth on whether Sen. Joe Lieberman would vote for the public option. Rumors were swirling that he was, but then, a statement was issued from Lieberman's PR guy, stating, "If you believe this story (Lieberman joining Reid on a vote for public option) is true, you will also believe that I am replacing A Rod in game six of the series."

I have a sense of humor, but this type of crass statement wasn't funny to me. From where I sit, Anthem is withholding Luna's first synergis shot (a necessary shot for her to ward off the threat of RSV, which since she will be undergoing the Fontan operation in 2010, would be most inconvenient and dangerous if she acquired the respiratory disease).

I'm also worried about what the New Year will bring in terms of our health insurance we obtain through the Architect's place of work. For '09 we had a 5K deductible, which we maxed out in the first 6 weeks of the year, and pay a monthly premium of $700. It's a total of $13,400. Another 5K annual increase will put our out of pocket expense for health care near 20K. Needless to say, I'm worried. And among other things, the bill that is being debated would prevent families like mine from being discriminated at renewal time. Insurance companies, under the proposed bill, could not raise our rates based upon our past history.

I decided I would organize my thoughts and place a phone call straight to Senator Lieberman's office.

This is how the phone conversation went:

(202) 224-4041 is the direct number to his office and after several rings Lieberman's voice comes on. He cheerily prompts you to press 1 to leave a message or 2 to speak with a staffer. I pressed 2.

A woman staffer answered and I introduced myself and my reason for calling. I then asked if she had a moment so I could share my thoughts on the health care bill. She said yes.

I continued my pitch saying we have a medically-needy kid with a series of heart defects, and while she, due to modern medicine, does wonderfully; the insurance issues we deal with on a regular basis are draining and exhausting.


I pressed on saying I'm heart-broken over what seems to be Senator Lieberman's game of chicken on the issue, while many of us, our lives and livelihoods, are hinged on his vote.


I pressed on: His PR guy is releasing jokes about it, and here we sit, hanging on to this hope that something will be passed that protects kids like our daughter.

Still silence. "Are you still there?", I ask. "yes", the crisp voice answers.

I press on: In 2010 our daughter Luna will endure the Fontan prodecude, which is an operation that will correct her circulatory system, which because of her malformed heart, is very complicated. The operation, hospital stay, and all else will most likely cost close to 200K-if not more, and I'm terrified of what Anthem will and will not pay for.

Still silence.

I pressed on: I have applied for Federal help, but the irony is because Luna is deemed healthy-due to the vigilant care she receives-she is at the bottom of the list.

Finally, I ask, what is Joe Lieberman's stance on the public option?

The crisp voice on the other end finally shows some signs of life with a long exhale.
"Well, I can tell you he is not voting for it".

With the blood rising into my face, I press on: "if he's not for the public option, then what is he for?

"I don't know".

Silence on my end.

"I can't say".

I'll admit at this point I was upset...furious at it all, can't say, I don't know? I work in media and represent various clients, and I can tell you, if you represent someone you know exactly what they stand for.

I'm shocked at myself, but I went on to say: It's obvious it is that Lieberman is a Trojan horse for the Republican Party and why does he vote with the Democrats anyway?

At that point she briskly ushered me to a close, and said, "I'll pass along your information".

Tuesday, September 15, 2009

Walk this way!

Luna walks with her Bebe.

On September 11th, while the country marked the eight year since the world trade attacks, Luna blissfully ignorant of the somber mood around her, toddled happily into her 18 month. Just two days before she turned 1 1/2, she took her very first step. A week and half later she was walking across the room with her arms straight out reaching for her daddy, while making a very good Frankenstein impersonation.

18 months is indeed considered a late walker. When Sienna wasn't walking at 16 months I not-so-casually called up all the Grandparents to inquire when Paul and I walked, and while we're on the topic, when did they walk, and Paul's brothers? It turns out we are a family of late walkers. Perhaps we're all too content to sit and read our books. I had known all along that I didn't walk until the Christmas after I turned one. My birthday is mid-July, so it wasn't till the calendar, dog-eared with pages falling down, and on it's last leg, did I decide to get off my own diapered butt.

Interestingly, the Architect, also a July baby, was the latest walker in his family of three boys. Nonetheless, when Sienna wasn't walking at 15 months, then 16, my stomach would drop every time I entered a situation where her lack of vertical stature became the topic du jour.

So, when Luna wasn't walking at 15 months, I really wasn't too concerned. Though I must admit, as she neared the end of her 17th month I was starting to worry. No one likes their kid to be the last, ya know? The Sunday of Labor Day weekend, and the first full weekend in our new house, we had some friends over for classic New England day of apple picking. After the kids filled their pecks, we came back to the house. The music bopping in the background was just the beat Luna needed to get into the groove. She stood up, and while shaking her arms to the music she took two steps forward. By the following week she was walking across the room.

Funny how in 10 years no one will ever remember who walked when (except, of course the Grandparents). But for now, it must be marked, Luna, special Lu who was supposed to be delayed developmentally, who at 6 months-such a crucial age of progress-was laid-up with open heart surgery-is the Luna who walked not so very much later than her older sister.

Wednesday, August 12, 2009

What's in a bowl of stupid?

Yesterday I attended President Obama's speach on health care reform at the Portsmouth High School Gymnasium. My friend Jen, graciously shared her pair of tickets with me. We, along with 2000 or so others, waited in line for two hours before we were admitted to the High School. (Obama was punctual and arrived just when he right about 1pm).

In a word, he was electrifying. The event kicked off with the pledge of allegiance, the national prayer, and the national anthem sung by Portsmouth's own, Natalie Hazzard. The President was then introduced by a Portsmouth resident, Lori Hitchcock, who has been denied health insurance due to her health condition (a pre-existing condition, that being hepatitus C).

Finally the president arrived on stage. He gave brief-ish statement on heath care reform before turning the event over to us, where everyone was encouraged to raise their hands. Folks were literally handpicked by the president (he's often referred to as 'The Professor', and I could see why; at times it really did feel like you were sitting in a college lecture; the best kind of lecture too, where the rooms are packed, the professor is animated and challenging, and everyone eagerly waves their hands hoping they get picked next).

Obama went on to clear-up virtually every myth out there from the rumor on death panels (no Obama won't pull the plug on dear ole grannie), to his alleged hit-list-my personal favorite-which is a list of names he's collecting by email of those who don't agree with him, and rationed care (for some reason those who oppose HCR think that the government will 'ration' care, when right now, your private insurance company is probably rationing your coverage now. If you need more explanation, click here, my last post illustrates how this is happening to my family now).

While inside the mood was oozing with love and good cheer, outside the picketers were unruly, and just downright ugly. The contrast between those who support healthcare reform and those who oppose it couldn't have been more stark.

PS: See if you can find the picketer with the gun. Scary stuff!

Wednesday, July 22, 2009

The High Cost of a Heart Kid

It's 3am and I am awake. Luna woke for a rare middle of the night milk nightcap and instead of changing her diaper and filling her bottle and then slipping right back into the dream where I left off, I lay awake thinking about...medical bills.

When the Architect and I first learned of Luna's condition, when I was 20 weeks pregnant, the first thing he blurted out was, "we can't afford this!" Or maybe it was, "this will kill us financially". Either way, I winced at his brashness, but deep down inside I knew what he was thinking. We had just finished watching Michael Moore's SICKO and the Architect was terrified. The movie depicted an older couple, both man and woman had suffered cancers. They regained their health, but lost the roof over their head to medical bills.

Now that Luna is 16 months, the reality of having a special medical needs child is sinking in. For the first year of her life, we geared up emotionally to get her through her two heart surgeries and two catheters, and countless testing, shots and doctors visits in between.

Modern medical science of today is amazing. Luna lives a normal toddler life.

But it's the insurance issues (the Architect and I simply refer to it as the Insurance BS) that haunts you and hangs over you for as long as the mind can imagine.

It's not that we don't have health insurance. We do. We have Anthem, and our policy is a HSA. Basically, once we hit a five thousand out of pocket, Anthem pays 100% of all medical bills.

Ha-ha, not so fast.

Most Americans I know have had a good round or two of back and forth over a erroneous medical bill. It's pretty much the status-quo. It's part of the system. Confusing consumers of what has been paid, and what is owed. Usually there is some bogus code that is attached to all of this.... "but what does A9067BS refer to on my bill?? my child did not have a cat scan on March 13th, it was an echo cardiogram!?"

This year alone Luna has cost Anthem nearly 80K. We diligently pay, or the Architect, through his work, pays the out of pocket $800/month for the policy. We then are responsible for the 5K out of pocket, above and beyond the monthly premium, which we have also paid back in February. The Architect's place of work contributes 25% to the policy and then $1500 to the HSA account. And I should note, and this is just an observation; but our insurance went up substantially the year after Luna was born. The Architect's place of vocation couldn't afford the HMO policies for its employees. My guess our family and the family with the child with Leukemia blew the 2009 premiums right out of the water. The pool was too small to sustain the risk. Perhaps I sound bitter, but business terms like 'risk and profit pool' should not be used when referring to children with cancer and serious heart issues. But naturally we can't blame any place of employment for seeking out the least expensive insurance for their employees.

But Anthem doesn't stop there. Every week we are bombarded by medical statements. An HSA statement arrives stating what Anthem has paid out and what we have paid out. Often two statements will arrive in one envelope, stating two different things. The Architect and I pass the statement back and forth, each trying to decode the convoluted bills.

The last series of statement to land in our mailbox have been surprisingly consistent. For Luna's last catheter, we are responsible for $6700.

Did I mention already that we hit our out of pocket max of $5000 and we pay $800 a month for the policy? We fulfilled our end of the bargain, now its Anthem's turn.

So, the games begin. And actually have been for a while. Behind me, on the window is a stack of bills. Smaller bills in comparison, one for $72 another for $616, both bills from the hospitals themselves. Various balances that through "code error" (read complete BS and a practice I have since learned from industry insiders that is used often to confuse consumers), and more importantly, neither are for services that Luna actually endured. They are, in short, bogus claims that we're now responsible for. (and as of this reading, I returned home today, before publishing post to find the $616 bill has gone into collections-this is for a cat scan, a procedure that Luna did not in fact receive!)

I've given up making phone calls as its only an exercise in tail chasing consisting of hours and hours of wasted time, where everyone will be pulled in the mix, including Luna's two cardiologists and the catheter doctor, trying to decipher what a certain charge is for. Rounds of emails and phone calls will be made; to the hospital to Anthem, to the doctors themselves. Each time you're convinced that you've finally made some head way and you won't see the bill again. And then each month the same bill, arrives in the mail.

I think to myself we simply won't pay the $6700. But then worry come January of 2010 will our family have health coverage.

Meanwhile the media buzz has been all about Obama's healthcare reform. Tonight he held a press conference on the very topic. I receive endless tweets to share my story, but wonder where to begin. The opponents views bubble-up through social media in vicious statements and articles to block universal healthcare and I'm reminded of the bumper sticker, Republicans solution to the healthcare crisis: don't get sick! I can't bring myself to even follow what's going on. It's too close to home. All I know is health care is one scary mess.

Tuesday, July 14, 2009

Summer At Last

Summer finally decided to make an appearance here in New England. According to Sam Champion, the weather anchor on Good Morning America, Boston only saw 3 sunny days from May 1 through July 3rd. This is what our little city looked like in June. Not pretty. June, arguably the best month of the year, was replaced by March, a toss-up month, and one that occasionally can give you sunny skies with small bursts of spring, but more typically will rain, rain, and rain. The latter part of the month, when we did not see even a hint of sun for nearly 3 straight weeks, was the most difficult. Our house, with six large skylights and a footprint of not much more than 1100 sq feet illuminates even on the darkest winter day. But with the rain, sometimes a mere drizzle, and other times a driving persistent stream; the sky lights mocked us. Not for a minute, while we all hunkered down inside could you forget the weather outside. At one particular moment a cloud seemed to disintegrate just over our roof, dumping rain so hard onto the glass I worried about leakage. Sienna immediately burst into tears and plugged her ears, pleading with me to make it go away.

The mind can play tricks on you when you don't see the sun for 20 straight days. Some mornings we would wake to light grey skies and Sienna would remark, "Oh, it's sunny today!" It broke my heart, but then again, I too was beginning to forget what morning, noon and evening looked like. It was varying degrees of grey, every hour of every day, and as a result the girls bed time seemed to get pushed back later and later.

I wondered to myself how we could so successfully repair broken hearts and faulty arteries, yet there was no solution whatsoever to stopping rain.

During our unwelcome, and unusual rainy season, moods sank and completions ran sallow. Sienna worried me with her greenish complexion and dark circles under her eyes, and Luna's lips seemed a permanent shade of purple. (interestingly, Luna's lips will turn blue-ish purple in rainy, cool weather, yet when I check her sats I always get the same high 80's that I've been seeing with her all along).

Finally, just around the 4th of July, the stubborn 'low-pressure' system (a term that can now instill fear and loathing in many of us) pushed out to sea and we were greeted with sun and crisp-for-July air.

Sienna, my sensitive child, still seems off from the rain. At nearly 3 1/2, an age of unfettered energy, she complains a lot of being tired and I wonder if her vitamin D levels have depleted. Luna of course, in typical Luna fashion, never seemed the least bit fazed by the weather. Each morning we awoke to rain I would search in her for signs of discontent, but she gave me nothing. She continued right along with toddlerdom, practicing over and over getting in and out of Sienna's big-girl chair, and testing the limits of her new vertical status by creeping around and around the coffee table.

Finally, smack in the middle of July, life feels familiarly summer-ish again. In a few hours the house will be awake and bustling, and I'll run around grabbing towels, snacks and bathing suits for swim lessons.

Proud Luna with rain-induced purple lips.

The girls find ways to amuse themselves while trapped indoors.

Sunday, June 14, 2009

An Event That Changed My Life

I participate in a writers workshop. I joined two summers ago. It's been the same core group-with some floating in and others floating out-long before I joined.

Every Monday morning we meet at Norm's house and sit at his dining room table which is a special round table that dates back to the beginning of the 20th century-and one that has etched names and drawings on the oak top. Legend has it was the round table to a progressive group of thespians who resided in Chicago over 100 years ago.

The table is magical and the stories that effuse out of us during our workshop seem channeled from it's creative soul.

Each Monday morning we are given a prompt. One cold February morning with nearly 3 feet of snow outside, we were given the prompt, "An event that changed my life". The passage below was my response:

After the news settled in and after I knew there was no way I could end-deliberately end-her life at just 21 weeks, a funny calm settled into me.

I've always welcomed change and yearned for adventure. It was all how you chose to look at it I thought. This too would be an adventure.

"Your child, the baby you're carrying...she has a very rare and serious heart defect."

The doctor continued in hushed tones. Speaking in a language that was completely foreign to me; pulmonary atresia, pulmonary stenosis, double outlet left ventrical, dextrocardia...

The risks and complications, however, were words I understood.

The diagnosis, spoken by a rather handsome Boston cardiologist sprayed my soul like shrapnel. Some pieces of the information settled deep within me. Still others bounced off. I imagined the phrases 'feeding tubes' 'heart transplant' and 'heart failure' laying on the ugly grey institutional carpet in the tiny consult room in the hospital.

Paul and I left Boston numb. Quietly, without speaking a word to each other we snaked through the Fenway traffic. The moon-huge and full-late October-a Harvest moon-beamed down on the Red Sox fans. Later, we would give that Harvest Moon to our baby in the form of a name. Luna, Goddess of the Moon.

The air was thick and warm. The city vibrated. Game 2 of the World Series, Boston vs. Colorado. I stared at the 20-somethings skipping and yelling in the streets. With my window open all the way, some of the revellers nearly brushed me as they skipped past the car, yet I felt a million miles away from it all. I was a tourist, riding a tram, viewing American History comfortably from the darkened museum-or so I felt at that moment.

"This baby will be the best thing that happens to us", I thought, as we pulled on to the express way.

Monday, June 1, 2009

Flap Happy! (Lu finally comes out of her shell).

Yesterday was a special day. The girls and I went up to Maine to celebrate the bridal shower of the Architect's cousin (he has close to 50 first only one.). I dressed the girls in their matching Flap Happy dresses that I picked-up in Ogunquit over Memorial Day weekend. The shop is called Baby Instincts and it carries all the baby/children's lines that we mommies to girls covet: Baby Lulu, Flap Happy, Zutano, Absorba, Wee Ones. The shop also carries some handmade dresses that were flowy and long with lace and stenciling and truly looked like pieces of art.

At the party the girls worked each room of the gracious old New England home, charming each person they met. This is nothing new for Sienna-whom in her presence, I often find myself holding my breath-because you can never be too sure that the child might not tell a perfect stranger that his hair is messy (sorry to the professor-looking man in Market Basket). But Luna. She's a whole different ball of wax; or so I thought.

Lu scooted around after Sienna-looking like some well dressed lap dog-and tried to crawl up the legs of anyone whom she came across. Later in the day when the party moved downstairs for gift opening, Luna reclined on the over-sized pillow-with her arms over her head. At one point I looked over to see some younger cousins-children who looked tween age-firing off shot after shot of our little lap dog. Not once did Luna even scan the crowd for me. No, she was much too busy with her photo shoot.

This is the same child who for the past 6 months has screamed every time a stranger came into her view. The same child, who has clinged to me like a baby monkey, forcing me to achieve tricks I never knew I could do; like emptying my bladder with a child strapped to me-and washing my hands afterwards.

Here are some shots taken before we left for the bridal shower. I think they capture the new Lu rather perfectly!

Lu pulling herself up. This is a HUGE developmental leap for her!

Assuming a crawling position; but only teasing us. She rather scoot.

I have tons of photos like these. As soon as I pull out the camera, Luna crawls up my legs and tries to lick the lens. Mmmmm...Canons. Maybe they taste better than Nikons?

Luna is naughty. And I secretly love it. She holds her own to Sienna, so much so that Sienna often comes running to me-shrieking that Luna pushed her, and I have to remind Sienna that Lu is 20 lbs.

They kiss and make-up.

Monday, May 18, 2009

Afraid of the Dark

Every night last week between the hours of 10pm and 1am Luna woke-up screaming with what seemed to be nightmares. The fact that a 14 month old could have anything other than sweet baby dreams is a disturbing thought. Luna's screams were not a dull, low, too-sick-to-cry-cries, but a real I've-just-witnessed-something-horrible-scream. Each night I was able to console her, and each night she easily drifted back to sleep. One night however I couldn't settle Luna down. I brought her into our bed-hugging and holding her-but she just stared off-her face not looking 14 months old, but rather looking much, much older. Wiser yes, but too old for her barely beyond 1 year of age.

I tried snapping her out of her haze by tickling and saying silly things, all the while in the back of my head I couldn't ignore something Luna's cardiologist had told me recently; and something that I remember hearing at the beginning of our journey, when we first learned of Luna's special heart back in October of 2007:

Heart kids have a higher chance of developing behavioral and emotional problems. It is unclear why this is, but studies have pointed to the babies being on the bypass machine as a possible culprit (basically the machine that does the breathing and keeps their heart beating while their tiny thumpers are being worked on).

Thinking about all this reminded me of an interview I listened to a while back on Fresh Air with the actor Mark Ruffalo. During the interview, Terry Gross, the host speaks to the actor about his break back into Hollywood. Ruffalo, while still in his early 30's was diagnosed with a brain tumor. Luckily for everyone his surgery was successful, the tumor is gone, and he is now a healthy actor and father again. But during the interview Ruffalo explains what a long journey it was. The biggest hurdle for him was the anesthesia. He opined that for every hour one is under anesthesia, it's like losing a month of your life. His brain surgery was a long one, almost 10 hours; and once he came to, it was like he had to learn everything all over again.

I heard the interview just by happenstance while I was pregnant with Luna, and it was one that would loop through my mind-and still does-for days on end. If an adult feels he loses a month of life for every hour under anesthesia, what happens to an infant who is just 3 days old when she goes under for 4-6 hours during her heart surgery? and then another at six months? Add in her two cardiac catheters and Luna has been under anesthesia close to 14 hours, which brings her back to 0 months in anesthesia recovery land.

The interview and thoughts of anesthesia, bypass machine and behavior issues swirled though my head as I laid on the bed with my strangely despondent toddler. After a half hour of Luna starring off into space, I finally carried her back to her crib where she slept peacefully for the rest of the night. The next night, and every night since she has slept, well, like a baby. A week later I relayed my thoughts to a fellow heart mama and good friend over dinner. I told her of Luna's horrific nightmares, expecting her eyes to widen with fear. Instead she just said, "Oh, my older son Preston had those. They were night terrors, but he completely outgrew them."

"Oh, your older son who is completely heart healthy who happens to also be whip smart and well behaved?", I responded.

"Yep, him."

Thursday, April 30, 2009

Life is Blue-tiful!

The day before yesterday, when it was 90 degrees in April, in Northern New England, I took the girls to Luna's follow-up cardiology appointment. This was her big follow-up appointment to see how well the catheter worked. Maybe because both the girls are getting older-a full year older than when I first started bringing them-(and I always have both, mostly because I don't want to pay to have our beloved babysitter take Sienna, but also, these girls are two peas in a pod; neither one likes especially to be with me alone). Now that the girls are 13 months and 3, not 3 months and 2, it's almost getting....dare I say fun?

Due to the sweltering weather, I had brought the girls to the beach in the morning and as beach time goes, I happened to look at my cellphone while they made sandcastles, and realized it was already time to leave. I quickly dragged the girls off the beach and whisked them to Dr. G's, sandy bums and all.

Luna suffers through her appointments. She has been poked and prodded her entire life, and whenever someone starts to bring a stethoscope to her chest she screams at the top of her lungs. It's interesting to me that doctors can even hear what's going on inside of her, let alone listen for a dull heart murmur.

But not this time. Luna cried a bit. But once we got her settled down on the exam bed, in the darkened room with Happy Feet on the big screen-she sucked her bottle and giggled at the silly penguins on the screen. This meant that the echo, that normally takes over an hour, only lasted about 15 minutes. And because we didn't have all the screaming, squirming and hysterical gag-crying, Cindy, the sweetest echo reader in the world, got amazing shots.

The prognosis? Luna is looking great. The balloon dilation of her left pulmonary artery worked beautifully (to quote Dr. G). The run-away blood vessels, those are all gone, and best of all her heart function is perfect.

Dr. G and I talked about the road ahead. Right now Luna's sats are back down to the low 80's. This is fine and where we want them. Once she starts getting really mobile they will drop a bit, and yes, she will get blue. As Dr. G put it, 80's blue is somewhat undetectable-especially to the untrained eye. But 70's blue is blue. Like standing in the grocery aisle-your-kid-looks-awfully-blue blue. But fear not. This is normal. And all part of the plan. For the next year, up until Luna goes in for her last repair, that of course being the Fontan, the child is going to look rather indigo.

I say blue is beautiful. I declare Blue Is The New Black. Don't hate me because I'm blue-tiful. You get my point. The worst part will be for me, having to explain to mere strangers why my child's lips are purple.

Luna's vein in her neck will also become more noticeable as she grows and her body thins out. This is because her vena cava-the big ole vein coming down from the brain-is routed straight to her pulmonary artery (thus the Glenn Operation). So if you see a blue-ish child with a bulging vein in her neck, don't fret, it's just my child, pre-Fontan. I have the same mega-vein and I didn't even have the Glenn. Luna will match Sienna, who also has the 'neck vein'. When the older child has a toddler tantrum, her jugular jiggles and bulges, displaying a mini tantrum of it's own.

The other tidbit of information we learned is when we fly, Miss Luna will need to wear oxygen. Cabin pressure is not kept to normal-sea-level oxygen levels. Basically it's kept at an altitude equivalent to standing on a really, really tall mountain. The result? All of our sats drop. So if you were to slap a monitor on every index finger on the plane, everyone would read in the 80's rather than the high 90's where most folks hang. This of course explains why one Dixie cup of wine feels like you just drained the entire bottle-by IV-in 5 minutes. So, because of the already dropped cabin pressure, Miss Lu will have to wear oxygen when we take our first family trip as a foursome to Jamaica. The Architect, along with a few friends, suggested why can't Lu simply activate the drop down oxygen masks. This struck me as really funny and immediately conjured up scenes from the classic movie Airplane where Vicky from Love Boat is sucking in her cheeks, making fish face because the cabin pressure had dropped so low. We don't want Luna to suffer fish face any time during the flight, so when we check our baggage and make sure all our shampoos fit into a zip lock, we'll also have to 'clear' the oxygen tanks with customs. THAT will be the really fun part.

But we've got plenty of time before January. The entire summer is before us, and not.a.single.cardiology.appointment.till.August. (!!)

Tuesday, April 21, 2009

Official Diagnosis... stated on Luna's discharge papers from her catheter:

13 mo F w/ dextrocardia, common atrium, DIRV, DORV, PA s/p RmBTS, BDG, LPA stenosis presents for HD cath and LPA angioplasty.

Got that?

Friday, April 17, 2009

A Brand New Day.

Am I ever glad to have the catheter behind us. The procedure itself-naturally the most important part-went as smoothly as it possibly could. The logistics end of it was a little tedious.

Luna was scheduled for the 9:30 slot, and after getting Sienna ready for her big school portraits, and then dropping her at our friend's house, then The Architect and I arguing about what vehicles to drive (he wanted to follow Luna and me in his truck, which in the end was the better idea because it avoided him having to drive the 120 round trip to the hospital to come retrieve us when we were discharged), and then battling the usual rush hour traffic; we were more than a little deflated when a nurse scurried toward us upon walking in to say there was an emergency-an infant needed an emergency cath-so could you please come back at 12.30. She gave Luna a bottle of apple juice (the last meal she had eaten was a Happy Meal at 4pm the day before, and as of this writing-Friday morning 7:15, she's eaten nothing but a few Cheerios and Pirate's Booty).

So, we gathered all our belongings and shuffled out of the waiting room and made our way down to the lobby. The lobby in Boston Children's Hospital; with its larger-than-life moving sculpture made up of pulleys and tracks where the kiddos (and adults) can spend hours following the balls' journey through the optical course; rivals the best children's museums around. Then there is a huge fish tank filled with exotic species, and of course the cushy lounge with a giant flat screen TV which airs PBS all day, until about 6pm when, depending upon the season, the janitors and service men and women change it to the Bruin's, Celtic's or Red Sox game.

We bided our time nicely during our wait. Luna watched Sesame Street, The Architect made work e-mails and phone calls, and I filled out the monster application for Katie Beckett (more to come on why it's incredibly important to enroll your special needs child-whether it be heath, emotional, or learning into this federal program).

At 12:15 we made our way back up to the cath floor-where we waited till nearly 3pm until they finally took us back. (It should be noted that Children's is a teaching hospital, and of course a major health institution mecca. Upon walking in there are signs stating that whether you speak Chinese, Cantonese, or perhaps a rural dialect of some remote country, whatever your tongue, there are trained personnel who can spring into action on a seconds notice to translate your child's medical procedure for you. Says a lot, huh?)

So, this next part I'm about to describe is a repeat of pre-Glenn, pre-cath and pre-sedated echos; and by now you're probably pretty used to hearing about Luna getting the 'happy juice'. Only this time, because she had just been napping, the happy juice wouldn't knock her out. For over a half an hour we watched Luna sway and babble, and yes, hiccup. I'm thinking if in the near future there is a roll for a drunken sailor in the pre-pre school play, Luna should try out. Remember in old cartoons when they would depict one of the character's drunk, say like Tom from Tom & Jerry? That's how Luna was acting. Luckily she's a happy drunk, and not a belligerent one, so we weren't asked to leave or anything.

Finally the nurses took her back because it was clear she wasn't going to fall asleep. Luna protested only a little, then gave Paul and me a sloppy wave, and was whisked back where the anesthesiologists would don her face with a tiny gas mask so they could then safely insert the IVs.

The entire procedure took exactly 2 hours. And it went exactly as planned. Dr. Bergersen, the cath doctor, took us back to show us the footage (which once I receive the disc, I'll post here, very amazing can see the balloon working it's magic on her left pulmonary artery-crazy!).

The best part was the results. The catheter, as I said in my last post served three purposes: enlarge the LPA, cauterize the errant blood vessels, and provide detailed information of Luna's heart, lungs and arteries. The catheter achieved all this-safely, and relatively un-invasively (is that a word?). And the results? Her heart is functioning perfectly, and her pressures, well they are just the same as someone with normal heart and lung function.

Her anatomy may look very different from yours and mine, but her body; well it's functioning just the same.

Thursday, April 16, 2009

Luna's status update:

Luna Ruth woke up from her nap with purple lips. Sats read 81-85 with heart rate of 150. Played with Sienna for 45 minutes, took Motrim and went back to sleep.

Luna's status update:

Luna Ruth woke up from her nap really cranky and agitated. Took Tylenol and went right back to sleep.

Luna's status update:

Luna Ruth is home from the hospital; a little tired but otherwise in great spirits; and is currently sitting in the bouncy seat with a bottle watching Word Girl.

Tuesday, April 14, 2009

Pre-cath, check!

It always feels so good to get through a day a Children's. The anticipation, the preparation, and just thinking about whether I'll get there on time (which today, I was 45 minutes late), is stressful.

After the 2 hour trip from NH and snaking through Boston traffic, Luna and I arrived to the hospital at 8:15 this morning.

Each step is a mini process from admitting to checking-in to Cardiac Pre-Op-and saying Luna's birth date and our home address about 14 times before I even sit down-each transaction feels like a mini-triumph.

First on our list was X-Rays. We were whisked away quickly to radiology and taken into the sterile room almost immediately. Luna was swiftly undressed and put into compromising positions so the X-Ray techs could take good pictures. I donned a lead apron and held her tiny arms above her head, while her feet dangled off the edge of the bench. The images of her were quite startling. I mean, I really don't think of her having...and I loathe this term, half a heart. And then the fact that's it's on the 'wrong side'. Well, you just can't ignore it when you looking at the X-Ray photos, when there is a big 'R' for Right, and there Luna's heart, rather apple-shaped, sits, just under the big 'R'.

Next was blood work. Another fun procedure. The wait was long so there was plenty of time for both Luna and I to study those in the waiting room (really, let's face it...but isn't so fascinating to study the others waiting in the stiff blue chairs and wonder why they are here?).

After about an 1/2 hour Luna was called, or rather 'Laura' as the nurse hollered out. I carried my bundle back and we both sat in the 'blood chair'. All in all it was quick. Luna cried, but honestly, she's so good natured (read, not like Sienna at her age), that it was all over in the blink of an eye. The best part was all her labs came back as normal as could be. Despite her croup-y cough, this kid is just healthy.

Then we were ushered back up to Cardiac Pre-op for EKG, height and weight. I guess I was wrong to think Luna would never seen the teens in weight again; she weighed in at about 19.13 and is just about 29 inches tall (or long as they say before one can walk).

After some waiting, and protesting from Luna, the cath doctor came in to explain how tomorrow would all go down. As I said in my previous post, her errant blood vessel will be cauterized. What I was wrong about is this actually happens often in kids and adults with these type of heart issues. The body thinks it's being oh-so-smart in sprouting an oxygenated vessel down to the lungs (when ones sats are low), but really it's not good for the lungs-and heart. The lungs receive this oxygenated blood and thinks, "what the heck is this? we only take blue blood, and then blow oxygen into it and send it back out to the rest of the body. why are you sending me this blood that we already worked on?". And then the body responds with elevated blood pressures, and suddenly the lungs and the heart are duplicating their very perfected and very efficient work load, and they don't like it. That's how the cath doctor explained it to me, and strangely, it made perfect sense. So, tomorrow when Luna is in la-la dream land, the doctor's will insert 2 caths-one in the groin, and one in the neck. One cath will go to work with the balloon in an attempt to enlarge her left pulmonary artery, and the other will go to work in cauterizing the blood vessel, the one that thinks it's oh-so-smart and sneaky.

Still the body feels nothing during this. Nothing. Years ago this would have been an open heart surgery (the cath will casually snake through Luna's's. still. beating. to get to it's final destination (artery going to the left lung).

The whole sha-bang should take about 4 hours-tops. After that Luna will drowsily come to, and be instructed to lay flat for 4 hours; and then stay a night for observation. Come Thursday she'll go home and play with Sienna like nothing ever happened.

So, what are your plans for tomorrow?

Monday, April 13, 2009

Luna's status update:

Luna Ruth is up at 3am with a nasty cough.

Wednesday, April 1, 2009

The renegade blood vessle.

Luna is supposed to go in for her cardiac catheter this week. I say supposed to, because as of this writing she has a pretty nasty cold and cough. Adults who have any type of catheter (angioplasty is a similar procedure) are awake for the procedure. In fact, I just had a conversation over the weekend with the husband of a good friend of mine. He underwent an exploratory cardiac catheter in his early 20's-and was awake for the procedure. I was relieved when he told me he didn't feel a thing. Strange, to think that a tiny probe with an equally tiny balloon and camera is inserted into the femoral artery (the one located at the pelvis), then snaked-up through one's veins, and in Luna's case, through her heart, yet, no sensation of pain or otherwise is felt. Amazing.

But since Luna is just 13 months, and we can hardly expect her to lay still for the hour-plus-long procedure, she will be fully anesthestisized. And of course because of the precarious-and still largely unknown-state of the body during anesthesia, she has to go in to this procedure totally healthy. Later today I'll call the doctor to see what they say about her cough.

You might be wondering why Luna is having a cardiac catheter, and really the story is quite fascinating. For the past several months, her doctors have been trying to get a good look at things Post-Glenn. Because of the nature of her anatomy-that of course being the dextrocardia, and the fact that even for a dextro kid her anatomy is still unusual (her heart is not only located on the right side of her body, and flipped mirror-image, but also sits on a different plane than most people with dextrocardia), the doctors require all the tools they can gather so they may translate what they are seeing (in one case this resulted in a 3-D imagery taken during her last sedated which Anthem declared they wouldn't contribe to the $616 procedure because it was 'too specialized' and 'not in their contract').

The 3-D imagery did produce the pictures that provided some important clues about what Luna's team thought they were seeing. It was something that I had never heard of, something I certainly never considered could ever happen. A blood vessel had sprouted off Luna's aorta.

It's thought that some time before Luna went in for her Glenn Operation, when her sats would have been at their lowest, her body decided it was going to do what it needed to get more oxygen to her lungs. If you imagine the aorta looking like a candy cane-oh, and if you need a quick refresher: the aorta is the biggest artery in the body, it carries oxygenated blood to the heart, lungs and rest of the body. Well, Luna's sprouted a small blood vessel. Basically, imagine a small stream of oxygenated blood that shoots off her candy cane and connects directly to her lungs. As Luna's card explained this to me, I felt that familiar sinking feeling. "Is this a good thing or a bad thing?" I needed to quickly reduce the news to either good or bad. It turns out that though in a way it's good, because it shows just how incredibly resilient Miss Luna's body is; her doctors don't want her sprouting all kinds of blood vessels so when she goes in for her cath, this will be cauterized.

This also explains why her sats have been hovering in the low 90's. I expressed to Luna's cardiologist how about 2 months ago I heard Luna gasping and choking in her crib. She had a cold, and was struggling to sleep with a stuffed nose and no way to relieve herself. I brought her into our bed-fully expecting that his may be the first time we have to bring Luna to the ER-because, well she just seemed like a sick kid. After a lot of protesting-aka full-out screaming-I got the oximeter strapped to her tiny finger. The results were astounding. Her sats were ranging from 88-90. I couldn't believe what I saw, so I then tested myself and got the routine 98, 99 and 100. Luna was congested, yet her sats were high. I put her back in her crib, where she slept like, well a baby, and called her card in the morning to relay the incredible story.

That had confirmed it-there was no question that her aorta had sprouted a blood vessel which is why her sats are very. close. to. normal.

So, bearing Luna recovers by this coming Wednesday, she will go in to Children's Hospital Boston for the cardiac cath. The cath will serve three purposes: cauterize the errant blood vessel, enlarge her pesky left pulmonary artery, and provide a detailed map of what is going on inside Luna's veins and heart.

The procedure requires a night stay at the hospital, and providing all goes to plan we'll be home Thursday afternoon. Until then...

Tuesday, March 31, 2009

The Day of Firsts.

Today was Luna's last Synergis shot. Luna is weighed every time she receives the inoculation, and this morning she weighed 20.3 lbs! So, I'm declaring this will be the last time she ever sees the teens on the tiny scale again. It's also the last day of March. Leaving March behind also means it's the last of Luna's baby days for good. She is officially a toddler. On April 11th she'll turn 13 months.

Of course 'lasts' are usually synonymous with 'firsts'. We leave one job and go on to the next. Upon high school graduation, we, (in the words of John Mayer) bust down the double doors, never to re-enter them again, and thus open the door to a new chapter of our lives. Tomorrow is the first day of April. And though spring arrived during the evening of March 20th, April to me is when spring really begins. Living in northern New England for most of my life, March is still very much a winter month. Over a decade ago we got one of our biggest snow falls in one day-on April 1st. "Happy April's Fool Day!", Mother Nature seemed to mock as I shoveled out my parents drive way, with the sound of birds chirping from the trees above.

About a week ago Luna said her first word other than Mama or Dada: dog. Sienna was playing with her Leapfrog computer game and in one of the scenes there was a dog. The object was to click on various items on the screen-which would then activate-or animate-an action. For example, when Sienna clicked on a spicket, water came rushing out and the dog would excitedly jump over and drink from the faucet. Luna was enjoying the game. She has a huge fascination with the large variety of these four-legged animals (Sienna did at this age too, which is funny because neither The Architect nor I are big dog people, and we certainly don't own one). When the dog preformed one of his tricks, Luna would make her usual excited noise which sounds something like this (ah!, ah!, ah!, ah!). Only this time she blurted out DOG! Another first that would forever be in etched our memories.

Luna, as it turns out, doesn't like lasts either. In her case she is experiencing some pretty intense separation anxiety. This is normal for her age; though certainly may be exacerbated because of the regular poking and prodding she receives from weekly physical therapy sessions to monthly synergis shots. Babies do not fully understand the concept of when their mother leaves, she will return. Hannah, Luna's physical therapist, generously did some research on the topic and printed a definition so we may both better understand why Luna screams relentlessly during our sessions.

Here are some excerpts from the research she found:

Separation Anxiety and Stranger Anxiety both coincide with a new intellectual skill called object permanence. They now remember objects and specific people that are not present. They will search for toys that have dropped out of sight. They are able to call up a mental image of what or who they are missing. They do not want the stranger, because the stranger is not you.

And this part I found most heart breaking:

They understand that people leave before they learn that people return. They can tell from your actions that you are about to leave. Anxiety begins to build even before you leave. They can't tell from your actions that you are about to return. They have no idea when-or even if-you will come back. And they miss you intensely. For them, each separation seems endless.

The explanation then goes on to say that babies and toddlers experience it typically between 6-7 months and then again from 12-18 months. Each phase can last from 2-4 months.

The article concludes that separation anxiety is a dominant issue until language is understood by strangers. (Interesting!)

After each hour long therapy session Hannah writes-up a very official looking report on what Luna accomplished. I leave you my favorite part of this weeks report:

"She is continually going up to kneeling when she wants to go up to her mom. We tried standing up at the ottoman. She eventually did it with her mom holding her from behind while I opened a book and looked at it with her. She liked the puppies and imitated the puppies panting".

Panting like a puppy? That very well may have been a first for Luna!

Here Luna displays Stranger Anxiety with the Easter Bunny. But the photo begs to ask: Can we blame her?

Monday, March 30, 2009

Luna's status update.

Luna Ruth is scooting around the living room with a cold washcloth in her mouth. This feels so good on my teeph!

Monday, March 23, 2009

Luna is one year old!

On March 11th Luna turned one year old. It was a really lovely day. Well, the weather was crummy, cold, windy and raw, which is completely normal for mid-march in New Hampshire. But the day itself, in a word, was peaceful. The girls were at daycare (an in-house daycare with all of 6 kids, two of whom are our girls), so I had plenty of time to clean, bake cupcakes (chocolate with homemade butter frosting) and do some last minute shopping. I cooked a simple dinner, one that my mother made often growing up. I can't remember if it ever had a name, but basically it's chicken thighs baked with Campbell's Cream of Mushroom soup served over rice. Everyone likes it, and it's so easy. It's good, cozy food.

After dinner, Sienna couldn't wait even a minute for our meals to digest, so we dove right into the festivities starting with our cupcakes. I dimmed the lights and carried one cupcake, plucked with the single, polka-dot candle over to Luna. She wriggled and clapped as we all sang 'Happy Birthday'. The tiny glow of the candle illuminated her face, her cheeks glowed like perfect rosy apples.

Luna was so completely content with her cupcake that she didn't seem to notice Sienna had opened all her presents. After the kids OD'ed on their cakes (quite literally, the effects of the sugar and chocolate settled-in resulting in two very silly little girls) we took the party to the living room where they played with their new Thomas the Train ride toy, Melissa & Doug clock and birthday cake and some Barbies that Sienna brought in to share the fun.

The events of the past year seemed decades old as I watched our girls-two perfectly happy and healthy little girls-play sweetly with their new toys.

Tuesday, March 10, 2009

It ain't always easy.

About a month ago Luna had her Early Intervention Evaluation. Two women who work for the state came over with a big canvas bag of toys and played with Luna for about a 1/2 hour. The collection of toys was made-up of big wooden puzzles, square boxes where you push the bottom and something pops-up out of the top, and blocks. Luna played right along with them, and demonstrated nothing short of charming on the thinking end of the test. Each exercise illustrated an ability in a certain area. So, for the thinking tests Luna scored at 12 months.

The physical part of the test was another story.

The 'games' got a bit more deceptive and challenging as the session went on. The women then took the same toys Luna had been playing with, and put them just out of her reach. In one example we laid Luna on her back and placed a block parallel with her head-about an arm's length away. Luna just stared at the toy. She made no motion to roll over and grab it-what-so-ever. For this set of exercises Luna only scored at 5 months. Ouch, reality slap, and time for Physical Therapy.

So yesterday Hannah, Luna's new physical therapist, came to our door with armed with a big, blue yoga ball and a large canvas bag. Sienna, Luna, the therapist and I all packed into Luna's tiny room to begin the session. Luna hated every minute of it. She did not like at all the demanding physical positions we were asking of her tiny body.

Luna's biggest challenge is crawling. She gets around on her bum by scooting, which I thought was rather ingenious. But where Luna really struggles is with intermediate-type positions. So, if I put a toy on top of Sienna's pint-size table, Luna has trouble figuring out that she can pull herself up to retrieve the toy. Naturally, the fact that she had open heart surgery at 6 months-which is such a pivotal time for development-doesn't help her case. But there are other reasons why otherwise healthy kids are facing more delays. We as a society keep our babies on their tummies much less now-especially since it was ruled that putting a baby to sleep on her back decreases the chance of SIDS. And as Hannah, our physical therapist pointed out, developing upper body strength is directed related to speech development. Who knew! Basically we need to develop those neck and face muscles so we can make the many and varied sounds to create language-and a weak upper body will impede this.

When Hannah delivered that fascinating news my thoughts drifted to a home video of my father and and his brother as kids. My Uncle just recently took tons and tons of old reel to reels from the 40-60's and converted them to DVD. Every conceivable moment of their childhood is captured-starting with the day each baby boy comes home from the hospital. The old family movies are breathtaking, but what I found so interesting is how differently we raise our kids now. And not in the-obvious-modern-technology-way, but with little things too.

Each baby boy was bathed on his tummy in a canvas bath. Humans are born with an innate sense to lift their heads out of a dangerous situation-what better way I thought to pique that sense than with bathing a baby on his belly.

Another video clip shows my father-not even a mere one year old-drinking from a glass. The movie played though my mind as Hannah informed me that sippy cups require the same sucking action as a bottle-and thus again impede speech.

By the end of the session I was ready to ditch my plastic tub with the reclined back and sippy cups in favor of good ole fashioned glass & canvas gear. For now though we'll start with baby steps-literally.

Wednesday, February 18, 2009

For your viewing pleasure.

It's been a while since I posted any photos of Luna. I've taken loads-though most end up on facebook-and not here. So, I thought while we wait for Luna's team to review her echo, we could actually have some fun. (I'll tell you, there have been a lot of lessons learned since giving birth to Luna. Perhaps the most important one is learning to live. in. the. moment. It probably helps that I'm fairly busy, okay insanely busy (!!) with my business, my family, book proposals (not mine-clients), insurance BS, um, facebook... that I have no time to really think about what the results are going to be. At the very least I'm too busy to worry-I only have time to keep my thoughts positive-and then the phone rings again, or a toddler cracks another demand on her mama.

It's hard to believe that Luna is turning one. (and Sienna three. The girls' birthdays are exactly two weeks apart-both are Pisces-and The Architect and I are both Cancers. A house full of water signs. We're swimming over here-or drowning, depending upon the day.

So here she is. Lu, Loon, The Loonster, Luna Bean, Sweetie, Lulu, all her chubby-cheeked glory.

The girls-for the most part-get along. Here Sienna displays good sharing skills (not always a regular sight).

Luna dubious of pool.

Luna-moved beyond dubious-is downright terrified of pool.

Luna-having too much fun with Pumpkin Pie baby food. This is a great food for heart babies who aren't that keen on eating. Pumpkin was recently touted as a superfood in the NY Times. This stuff tastes like, well, pumpkin pie. The kiddos think their having dessert, little do they know how good it is for them!

Playing Peak-a-boo with Mama.

Luna standing tall for Daddy at the Dover Chidren's Museum.

Woops, how did this get in here?! Sienna has a toy phone connected to her head all-the-time. Whether it's changing her dolly's diapers, playing at her kitchen, or sitting on the potty; a running dialog is always going on between she and the 'person' on the other end of the line.