Luna & We

Crossing State Lines

2011-08-09T12:49:00.000-07:00

Luna is beyond her three open heart surgeries that were required to correct her circulatory system. Surgeries that were vital for keeping her alive. The roller coaster of shuffling our lives in and out of hospitals, juggling work schedules, finding hotels, sedated catheters, and fighting for her synagis shots-making sure that the insurance will cover them every month (which they ultimately didn’t) is behind us.

The heavy-duty surgeries may be behind us now, but Luna’s diagnosis will always remain the same. DILV, DORV, Transformation of the Greater Arteries, Dextrocardia, Pulmonary Stenosis and Pulmonary Atresia-those will never change or go away. They represent structural abnormalities in the heart and arteries-unlike say, cancer, which thank goodness, can and does go away for good.

To bring you up to speed on our life, The Architect has been gainfully employed since December. Our family is off Healthy Kids and now on Tufts. New Insurance, new page. Or so I thought.

Tufts is a unique and not very prominent health insurer. Founded in Boston, it caters pretty much to the greater Boston area. And since we have a HMO, we need those annoying referrals. For everything.

The Architect also works in Boston, and we live just over the border in New Hampshire. You know when you hear Politians saying, “Let health consumers cross state lines! It’s a sure way to increase demand and thus competition”.

Um right. What they do not understand, or what they are forgetting, is the doctor-patient relationship. Shouldn’t that drive health care? Politians try to ‘business-ize” health insurance-though their logic is often skewed and the message is contradictory. Take Luna’s case. Sure, we can drive down to Boston. But we have a wonderful relationship with her cardiologist who practices in New Hampshire and Maine. Not only is it easier, and less expensive to cart my family out to the hospital in New Hampshire, but Luna knows the team. Keeping and maintaining the relationship with your medical team, and the consistency it provides, is paramount. And this is doubly so for children. A familiar face eases a child’s anxiety. Let’s face it. It sucks to have a child who has a life-long medical condition. But the suffering, branding, and flat out discrimination we face from our health insurers is inhumane. Bottom line: health insurance is great. If you are healthy.

Relieved that we no longer have Almighty Anthem, I thought we would be fine for our appointment today. Luna’s big, expensive stuff is behind us (for now…the future could bring, realistically, a change in her health (giant knock wood), and/or new technologies and surgeries that could help her live to her fullest.)

But for now she only needs annual cardiology appointments where she undergoes an EKG, pulse test, blood pressure check and a 60 minute echocardiogram. It’s an expensive visit, but it should only be annually.

The blow-back with Tufts started subtly. Her primary care physicians (who I adore, and who are so supportive with our trials with insurance), told me when I was getting her referral.

“We need to carefully describe her diagnosis”.

Another woman at the office, working on her paperwork explained, “Her diagnosis is too long.” The insurance needs to be able to fit it into their system.

I smiled stiffly; with two young kids attached to me I couldn’t get into questions.

I later found out that Luna’s diagnosis could be considered “too long” making referrals anywhere from difficult to impossible.

I held my breath and marched myself, Luna and her sister out to her cardiologist. Assuming the referral went through OK, I arrived to the front desk only to learn the entire hospital does not accept our insurance.

There would be no appointment for Luna. In the end it had nothing to do with Luna’s referral, and the potentiality that it would be “too long”. The entire hospital in New Hampshire simply does not contract with Tufts. We’ll try this again next month in Maine.

Luna being Luna in this photo. Her sense of humor and wit always gives me a lift. Though it was a cloudy day, Luna insisted on donning a pair of Dora sunglasses on her head for our four hour excursion for her (non)visit. Her cardiologist came out to the lobby and asked to see Luna's glasses. (Doctors are sneaky like that...really Dr. G just wanted to check her lip and complexion color). Later that night Luna asked me this, "Mom, did we drive all the way to the doctors just so she could look at my glasses?"

Tiny Hero

2011-05-31T01:33:00.000-07:00

Memorial Day weekend. Next to the 4th of July, it is my favorite time of the year. The unofficial kick-off of summer; it's marked by parades, barbecues, and maiden trips to the beach.

This Memorial Day also marks the one year anniversary of when Luna had her Fontan surgery. As I watched parades and read tweets honoring those who served our country, I thought to myself how fitting it is that Luna's own battle is remembered during the same weekend.

Last year at this time our family was cooped-up at Children's Hospital Boston. The four of us squeezed into Luna's ICU room and smiled, laughed, cried, cheered, and cajoled her through her recovery from her third and last open heart surgery.

Happy Memorial Day Luna. Thank you for making us all so proud!

Here is last year at this time...

Luna, post surgery.

And here is this past weekend...one year later.

Ballet recital; Luna is the third from the left. Her sister Sienna is on the far right.

Memorial Day BBQ 2011.

Voices of the Heart: 15th Annual New Hampshire Heart Ball

2011-02-13T04:04:00.000-08:00

Last Friday I spoke before an audience of 400 at the Sky Meadow Country Club in Nashua, New Hampshire. My speech was about our journey with Luna (I accidentally wrote 'to' Luna, which could also be accurate-the language and world we were about to embark upon was about as foreign to me as the moon.)

The transcript below is an abbreviated version. For a bit of levity, I added in the fact that Luna's cardiologist, the one who gave us her official diagnosis when I was 22 weeks pregnant-is referred to as 'Dr. Gorgeous'. And how there were worse things than being stuck in a room with him for hours and hours, week after week, for my regular echocardiograms.

Otherwise, the speech wasn't too much of a disaster. Afterward, the director asked me to speak at an engagement in April. I naturally accepted. There are worse things to do in life than spread the message of hope.

2011 Script

Sabrina Velandry; Journey with Luna

In October of 2007 my husband and I went in for the “fun” ultrasound to find out the sex our second child. We had a bet going; who ever guesses the sex correctly gets to name the baby. Paul guessed right with our first child, who then was a sixteen month old girl named Sienna.

We entered the darkened ultra sound room and I laid for what seemed like an eternity while the tech rolled the greased-up probe over my enlarged belly. She informed us that we were to have another girl. Paul and I exhaled and smiled, another girl. We would have two girls just about exactly 24 months apart-we were excited.

Paul left to pick-up our toddler from daycare and I stayed back to finish-up the examination. As I was sitting on the bed in the examination room, I could hear whispers from behind the door. Though I could only make out certain phrases, I heard the words, “something is wrong with the heart.”

My OB entered the room just moments later with a broad, forced smile. “We’re going to have to take another look at the baby’s heart. It’s just a precaution, but we’re going to send you to the hospital next door so we can get a better look on their equipment”.

I drove over to the hospital in a complete daze and went in for a level two ultra-sound. There the technician only needed a few moments to discern my baby’s heart: “I don’t specialize in fetuses, but I can tell you with authority this baby is missing half her heart.” My mouth somehow formed words and I managed to ask: “what should I do?”
“I don’t know, that’s all I can tell you.”

I exited the hospital and walked into the busy parking lot. For those of you who have been dealt a difficult diagnosis, you may know the sensation of feeling like you are outside your body. That’s how I felt that day-like I was actually looking down on myself from above.

Our lives changed completely starting with that warm October afternoon. What I didn’t realize then, is that they were going to change for the better.

"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 ventricle, 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. A huge, late October 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 revelers 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.

After the official diagnosis we were given three options. The first was to terminate. At 21 weeks pregnant this thought was unimaginable. The second was to give birth to the baby, but not seek any medical help for her; “a natural ending,” an option that basically means you watch your child die.
The last option was to seek medical help, and put Luna through the three open heart surgeries that would need in order to correct her abnormal heart and circulatory system.

My husband was terrified of the mountain debt that we could incur caring for such a medically needy child. Though I winced at his overly logical thinking to the matter, he was right. Caring for a medically needy child can financially destroy a family. Jobs are left, typically by the mother, so she can take to the front lines in a never ending war against the insurance companies. I too, eventually was sucked into this war. Ultimately I would have to temporarily abandon the company I was growing so I could provide day to day defense against our insurance company; who denied coverage, ignored our claims, or falsely charged us for Luna’s rigorous care.

Like many do when faced with a life crisis, I dug deep spiritually to see what kind of guidance I could find. Never one for church, I read books on the power of positive thinking. One evening while my husband slept soundly next to me, I thought the words “this baby is going to be the best thing to ever happen to me” again and again in my head. At first I didn’t believe my own words. But soon I would gain peace from stating this phrase over and over. One evening while practicing this meditation a warm feeling came over me, and it was like the sentence, “this baby is going to be the best thing to happen to us” were spoken back at me. I knew then that this child was going to be OK, more than OK, I knew that our baby girl would be special.

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.

Luna was born on March 11, 2008 and endured her first surgery, the BT shunt, at two days old. At six months of age she underwent the Bi-directional Glenn, and at age two she had her Fontan. In between her surgeries, she underwent three cardiac catheters. Two exploratory, and one to cauterize an errant blood vessel.

Next month she’ll be three years old. She is a spunky, smart, and determined little girl. In a recent progress report, her teachers praised her as a natural leader. Her favorite phrase is “I do it.” Indeed, Luna can do it! With the assistance of the best doctors and medicine in the country, and her strong will to survive, Luna ‘does it’ and does it well each and every day!

Thank you for your support!

The lovely Erin Fehlau from WMUR Channel 9 News, and Dr. Paul LeBlanc, President of Southern New Hampshire University (both were charming and funny emcees!)

Funny story about this poster...at one point during the night, it toppled over and fell on the people at the table sitting in front of it. The Architect and I chuckled while we watched the staff struggle with it, then finally cart it away.

Dear friends Amy & Charlie.

The Architect.

Visions of Sugar Plums with PBDEs Dancing in My Head

2010-12-29T12:33:00.000-08:00

If you’re like me, every year at Christmas you receive a pair of pajamas. This year The Architect gave me a lovely pair of ‘Simply Vera’ flannel pajamas that are super soft and cozy.

My children typically receive new pairs from their Memere at Christmastime.

Receiving nightgowns should be one of those easy things in life. You open them up, feel them, hug them, hold them, then carefully you put them back into the box until they are worn.

For me this ritual is a painful one.

Each year I tell my extended family very kindly that they don’t have to bother getting the girls’ pajamas. That its one of those things that I like to pick out myself. In this day and age you generally can get away with sounding like a neurotic parent on just about anything; especially when it comes to your beloved kids. Say for example candy treats. With peanut allergies at an all-time high, actually with allergies to anything at an all time high, it’s easy to say, “Oh little William can’t wear wool..., eat chocolate..., is on a gluten-free diet..., can’t be over stimulated with toys that relentlessly flicker..., etc, etc”.

But pajamas? What kind of freak says, “oh, don’t worry about getting my kids PJs…they require special sleepwear, and it’s too much of a bother to explain what they can wear.”

As I said this to my in-laws last year I could see their eyes glaze over.

I even have my older daughter, who will be five in February, convinced of the evils of a nightgown. In Wal-Mart not too long ago, we braced ourselves to do some quick shopping for cleaning supplies (Mrs. Meyer’s). As I whisked my kids past the children’s clothing department, my pre-Ker loudly announced, while standing at a rack of limply hung Tinker Bell nightgowns, “MAMA, THESE ARE THE PAJAMAS THAT ARE BAD FOR YOU, RIIIIIGGHHHHT?”

I laughed nervously and pulled the precocious child along with me, trying to ignore the glares and stares of my fellow shoppers around me. In this country you can get decked for telling someone not to eat a Big Mac. I sure wasn’t going to get into telling anyone around me why they shouldn’t wear a very innocent and happy-looking Dora nighty.

So, you can imagine now how on Christmas Day when my kids’ opened two matching Dora nightgowns why I spiraled into a panic attack. The girls cooed, and grabbed their new sleepwear immediately, while I checked the label, knowing exactly what I would see: THIS GARMENT IS FLAME RESISTANT.

I won’t bore you on the evils of fire resistant chemicals that are now found in everything from carpets, to sofas, to mattresses, to car seats and infant’s feety pajamas. But if you’re interested you can check here, here, here or here.

(I once heard on the radio the reason why we have so much pesticide and chemical additives in our modern life is because these concoctions were developed for WWII weaponry and after the war ended, manufacturers needed a new market.)

But don’t read all that. Then you will become tortured like me, and find yourself pillaging through clothes, bedding and furniture…desperately looking for these words: FLAME RESISTANT.

Six Months after Luna’s Fontan

2010-11-30T03:08:00.000-08:00

Yesterday was one of those super-charged days; one of those days where everything seems to happen at once. Mine started with the news of Leslie Nielsen’s death. I’ve watched Airplane at least a dozen times. Learning of someone’s passing; even a celebrity who you have no personal connection to, just gives you that “feeling”. After lingering on twitter too long, I scrambled to get the girls out the door by 8am so we could make it in time for Luna’s 8:45am post-Fontan check-up. En-route to the doctors while the girls sang in unison, “My mother is a baker, a baker, a baker…” I watched a woman cross the street-in a crosswalk-where she nearly got killed by a driver who was texting.

But onto the appointment:

Luna and her favorite dolly sat very patiently and still for the entire 45 minutes echocardiogram (btw, don’t ever criticize this dolly’s hair-which consists of just a few blonde shoots stemming off the top of her head-Luna gets very upset).

After the echo, we moved to the examining room where Luna had an EGK, her blood pressure taken, and a sat check (blood saturation levels). All checked out perfectly.

Then she hopped on the scale, where the digital numbers read an even 28 lbs.

Dr. G even got to try out her snazzy new stethoscope. The ages-old medical instrument has recently been adapted to the 21st century, where now you can record the patient’s heart while you listen. This is pretty amazing stuff. The recording is then imported into the computer where you can track, map, and illustrate a patient’s heart beat. The coolest part is when Luna is twenty, her doctor’s can go back and actually listen to what her heart sounded like when she was two. Hooray for cutting edge medical technology.

We then assessed Luna’s medication, which consists of just half a baby aspirin, and determined she’ll stay where she is. Patients are advised to take the entire tablet when they weigh 35 lbs, so we still have a year or so before we increase it. Otherwise, the appointment was quick and uneventful. Her next scheduled appointment is not until (insert long and extended drum roll please) ... MAY 2011.

Upon my arrival home, I settled back into The Monday After Thanksgiving barrage of emails, and learned that a fellow CHD’er, Steve, who also had a single ventricle, died in the early hours of the morning. What’s stranger is he is thought to have passed on the 66th anniversary of the invention of the Blalock-Thomas Shunt; an operation which paved the way for the survival of all single ventricle heart patients. This of course includes Luna.

Some days it seems that the universe wants to show you how valuable and special life is; and also how fleeting it can be. Yesterday was one of those days.

How has it been two years already?

2010-09-24T10:39:00.000-07:00

Today marks the two year anniversary since Luna had her second open heart surgery: The Glenn. I have been thinking about this date all month, but I didn’t think that it would hit me the way it has. For instance, Luna’s birthday doesn’t conjure up any sentimental feelings, other than the normal, “I can’t believe my kid is going to be three this year.” And two days after her birthday, March 13th, which marks the date of her first surgery really does nothing for me either. I’m fairly certain when that date passed last year I was oblivious to its meaning.

But for some reason today, September 24th has been hanging on me like a heavy coat. The number ‘24’ will always stick in my head. When Luna’s surgeons were deciding when her second surgery would be, they chose the 24th-partly because Luna would be a full six months-a good place to be age-wise for the operation, and partly due to sheer logistics. My friend Sarah at the time said with complete conviction: “24 is my favorite number, everything is going to be OK.”

And she was right.

Hard to believe that was then, this is now. Her last surgery, the Fontan was end of May-right during Memorial Day weekend. I wonder if I’ll have the same feelings as I do today during next year’s unofficial passage into summer. The vague, contradictory, and all consuming thoughts of:

We’re blessed.
Why us?
That was really tough.
That was already so long ago.
What was I really feeling then?

For now, and very likely forever; open heart surgeries are a thing of Luna’s past. She is just like every other kid now. Regular check-ups, dental appointments, shots, and the occasional virus is what her life is about now. Luna is a spunky, tough, sweet, stubborn, and mischievous little two-and-a-half year old now. And really, who would want it any other way?

Last weekend Luna decides to take off her skirt, her shoes and her fairy wings so she can roll down a nearby hill. (Portsmouth, NH Fairy House Tour).

A Simple Thank You

2010-06-30T10:41:00.000-07:00

Luna clutching her daddy on a recent camping trip in the White Mountains.

Now that the big stuff is behind us, it feels like a natural time to pause for a moment. My friend Mindi remarked in an email recently that we'll look back at this time "with amazement at the difficulties and the victories".

Indeed we will. Sometimes all of it seems like a movie. A very long movie, and one that held our attention captive for the past two years. Finally, the drama is over, and like walking out of a dark theater on a sunny day, the light is blinding. Our eyes are adjusting. Slowly the world around us is coming into focus.

I think for me, perhaps the most special memory, will be that of all the generosity poured our way. It was, and continues to be remarkable. Back in March, I wrote this blog post which illustrated the beginning of our journey through a fundraiser spearheaded by Marlow Rahn, a fellow Seacoast Mothers Association member. Like anything, it took just one person to reach out, and from there, others joined in. The fundraiser raised over $11,000. But the giving didn't stop there. Luna's school waived June tuition for our heart warrior, even though she miraculously only missed the first two weeks. (and honestly, she could have gone back after the first week, the only concern was that one of her classmates would knock her down, and subsequently bruise her healing chest).

Outside of the fundraiser, family, friends and complete strangers shared zoo passes, baseball tickets and cooked and delivered home cooked meals to our door. And of course, not looking over perhaps the biggest gift one can give, that being time. And loads of the precious commodity was put aside to help Luna.

To all of you, we thank you.

Love,
Paul, Sabrina, Sienna & Luna

Summer Fun (without getting a chest scar wet)

2010-06-21T04:17:00.000-07:00

Yesterday was my favorite type of day; hazy, hot and humid. Not up for battling the beach traffic, I racked my brain for something we could do with the girls in the yard that involved cool water. For a brief moment, I thought of pulling out the Slip 'N Slide, until I remembered that to use the classic lawn slide, Luna would have to slam down on her chest and slide down a wet, plastic sheath; and risk submerging her scar in an inch of water. So, that was out.

Post-open heart surgery, it is recommended that the patient doesn't swim for five weeks or participate in contact sports for eight. Swimming is off limits because you don't want to run the risk of the scar-which in Luna's case is maybe 6 inches or so-getting so saturated that it breaks open. Contact sports must be avoided because naturally a blow to the chest, after a major surgery in which the heart is moved and hardware is inserted into the body, just isn't a good idea.

Luckily The Architect had already considered these things and pulled out a fancy sprinkler and water guns for the girls. The sprinkler was purchased at Target for $10 and the squirters were four for a buck at the dollar store.

As you can see, a lot of fun was had for just $11!

Two weeks Ago Today (Fontan)

2010-06-11T02:24:00.000-07:00

It's hard to believe it's been two weeks already since Luna's Fontan operation. It already seems like a life time ago. The feeling is not unlike carrying around a heavy and impressive tome, and one you may not always be up for reading, but must do so, in order to move on to the next phase of life. We've just finished the last chapter. We feel collectively lighter as we put the book away on the family bookcase, where it will sit, hopefully for years, before we'll need to make amendments. Luna's Fontan, the last of her three open heart surgeries to correct her circulatory system, was completed two weeks ago. Her follow-up visit to cardiologist was all smiles. Her team was beaming as soon as they read her echocardiogram. And her sats? Pretty darn close to mine at 95. I'm telling you, this kid is magic.

I thought it would be fun to show photos depicting her speedy recovery.

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The Big Step Down. Regulars at hospitals like ourselves love this phrase. It's the first step towards breaking loose. Big sister Sienna benefited the most from this transition.

Time for Pet Therapy! A visit from Copley both excites and soothes the young patients.

Hospital bed mates get dressed for the big occasion. (Shhh, don't tell Sienna she's not a patient).

These next two photos are from the Portsmouth Chowder Fest, and were taken just one week after Luna's surgery. One week! She was on the heart and lung machine just one week prior!

I highly recommend taking the recipient of a major operation straight to the salon upon returning home from the hospital. And adding pink to the recent patients hair is always a good thing too for making one feel glamorous again.

On Wednesday Luna wore her Sunday best for her big sister's end of school year Tea Party. Isn't she lucky to have such tiny and dainty feet?!

Right Back at It. (Insurance again)

2010-06-05T05:01:00.000-07:00

I don’t want to spend my time blogging about this. I much rather spread the message of hope to others about Luna's speedy recovery from the Fontan. But once again The Health Insurance Company has hijacked our time, money and good spirits.

So here I am, blogging in attempt to get the corrupt ways out to the masses. One, because I need to document the sheer hell that Insurance Corp puts us through, and two, I dream of testifying against all of the Big-wigs at the Insurance Companies on the floor of congress one day. I will do my small part to change the way American runs its health insurance program. In my dreams, patients who were denied treatments from their insurance carrier, who as a result died, like this little girl here, will at least not die in vein. In this country, even an accidental death can result in second degree murder. So, why should these Health Insurance Companies, who very concertedly deny coverage to people (kids, even!), be shielded from serving a term for nothing short of murder?

So, you’re not going to believe this. Here goes the latest round with Big Insurance.

While I was in the hospital with Luna-getting her through her third and hopefully last open heart surgery, The Architect called to say there are insurance problems again.

Can we just stop right here. Let me repeat: a mother in the hospital with her two-year-old, trying to get her girl through surgery, and I have Insurance issues to worry about.

Ok, moving on.

The Architect went on to explain that the latest statements had two erroneous charges on them. The total out of pocket charges on the statements? Nearly $14,000. But for now, we’ll focus on just one of them.

One charge was for $4065, in which The Insurance company states I am the consumer, and apparently on 4/14/10 I had some type of service done at UMass Memorial Health center.

That’s funny. I’ve never even been to the place. And on that date I was with photographer Greg West touring the Boston Residential Design & Contruction Show.

This is where it get’s stranger than fiction.

Paul, aka, The Architect decides to call my primary care physicians to try to make some sense of the claim.

The receptionist, a young man took Paul’s call: and explained that he too has (insert big Insurance Provider here) and got a statement with the same exact charge, also from UMass Memorial Health center.

Can’t make this stuff up folks.

Nick, the receptionist explained that when he called to contest the charges, Big Insurance responded saying, “Oh, we know what happened, there is another man with your name and same birthday, that must be it”.

Well, guess what? With this little invention called the internet, it’s pretty easy to look up to see who has your name. There is no other Nick (insert unusual last name here), with his exact birthday; month, day and year.

And that really doesn’t explain why I got the same charges. Does Big Insurance want to tell me that there is another Sabrina Velandry out there?

Nick, works in health, and his parent company, concerned and bothered by the claim, and the Insurance Company's rebuttal to it, has taken up to investigating the case. I faxed over my statement, which will be part of this investigation.

When I called Big Insurance, the woman I spoke with Beth K. actually said to me: “well, this is not the fault of (Insert name of Big Insurance carrier here)”.

Let’s just stop here to reflect upon the dysfunctional culture of the entire company. First, can you think of another company where employees do not release their last names? Tells ya something, doesn’t it. Secondly, if this was your company, and you were alerted to such an error, would you not make it priority to stop whatever fraudulent behavior was stemming from your corporation?

Stay tuned folks; something tells me this is just the tip of the iceberg.

Fontan Day Five (Big Sister, Big Sister)

2010-06-01T10:51:00.000-07:00

I can’t complain. Really, I can’t. It’s Tuesday, we’ve only been here since Friday. And we were here last Thursday for pre-op, so I guess that counts for half a day. But, it’s still tedious. We’ve folded into a new month. June First today. And we missed Memorial Day weekend. It’s missing these types of landmarks that mess with you later. You feel gypped, off kilter, and find yourself later in the summer trying to recall what you did for unofficial kick-off of summer, and for the briefest of moments you actually forget, only to be disappointed when you regain your conscious footing.

On Luna:

She’s doing great. Chest tubes are out. X-Rays looking good. She does have low potassium levels, but with some regular eating we should be able to get those back up. She’s down to just one IV-in her hand. (Careless Mommy of the Year Award goes to me for accidentally pulling out Luna's IV while I was lying in bed with her. I looked down to see blood pooling in her blanket and on my shirt. Luna was sort of whimpering, and I started gasping and the nurse, thanks goodness, sprung into action and cleaned-up the mess.)

Her heart rate seems back on track too. No mysterious rhythms. And her blood-oxygen saturation levels off the vent are in the low 90’s. But really, they had been there before, but the big difference now is in her toes. Almost immediately after surgery her feet took on a healthy glow. Whereas before Luna thought she was wearing blue nail polish on her toes, now she’s sporting a nice nude look.

Perhaps the best thing to come from our extended hospital stay, is how our four-year-old is handling all this. The logistics of getting your child through three cardiac catheters and three open heart surgeries is one of the most difficult things to manage. What to do with our other child, commitments, and careers while we all hyper-focus on our youngest very noisy medical needs?

Our first born, Sienna, is a sensitive soul. No sooner had she mastered speaking when the child started spouting off a steady stream of conscious chatter; often having to do with the trees breathing in too much exhaust, the animals left out in the cold, or the flowers not getting enough, or getting too much rain. So, Luna's medical condition has always been something of a hotspot with her. Or so I had thought. In Sienna's four-year old brain, Luna’s heart is “on the outside”.

Thus, the thought of bringing Sienna into the hospital; where even the most seasoned parent can crumble at the sight of some of the patients-was simply nerve racking for me.

But Sienna did great. On the way in, The Architect prepped our precocious four-year-old; “You’re going to see little boys and girls who are sick and look different, but like Luna, they’re all here to get better”.

“I KNOW DADDY!”

And indeed, Sienna was as cool as a cucumber. I caught her wince just slightly at Luna’s tubing protruding like a plastic octopus from her chest. But otherwise Sienna was unfazed.

Later I brought her down to the food court where we hit the collective lunch break enjoyed by the staff of the several hospitals right in the area. This seemed to bother Sienna more than anything.

“Mommy, all the doctors and nurses left the babies alone in the ICU!”

Later, back in the ward, I thought I would try to capitalize on all this good-feeling toward the hospital, so I asked the four-year-old “do you think you want to be a doctor or nurse when you grow up?”

“No, Sienna responded, “I want to be a fire woman so I can put out all those forest fires and save the animals from burning.”

Fontan Day 3 (Boredom sets in)

2010-05-30T07:47:00.000-07:00

We’re officially over the hump of the Fontan surgery. Luna is recovering nicely-actually she’s ahead of schedule. The only thing we have hanging over our head is this little pacemaker issue. During surgery, as soon as she was settled into her to anesthesiac sleep, her heart beat went into a junctional rhythm. Basically this means the heart fires its beat off from different parts of the organ, when it should come from the atrium. In people with two ventricles this is no biggie. But with one ventricle, there are no liberties; the single ventricle people get put on a pacemaker-and fast. For now, however, Luna’s heart has settled back into a normal rhythm-which is a good thing.

Oh, and did I mention her surgeon now thinks she has a left ventricle? For the last year, she was determined to have a right one, but she’s switched teams again, this time playing for the left.

Now it’s boredom. And tedium. The most exciting thing to happen around here is shift change-which happens at 7am and then again at 7pm (these nurses really deserve a special place in heaven…seriously…they’re like angels on earth).

But boredom is much better than the nightmare we experienced the first night, just after Luna’s surgery. They always tell you after everything is OK, just how bad it got for a while. “Rocky” is the word her doctor’s use for her somewhat exorcist-like behavior just after surgery. No fewer than twelve doctors were in the room-several giving a running commentary on what medicines to add, what to pull. All the while Luna cried, bucked, reached, and grabbed for me; even under all those sedatives and while attached to a net of lines; giving the impression of a small whale fighting to escape a messy trap. Witnessing her powerful spirit and will to live was nothing short of incredible.

So, I leave you with some photos. As you can see Luna is uncomfortable, and bored. And she hasn’t moved since 7:30 Friday morning. And she has IVs in her feet (her wrist wasn’t having it), so she can’t walk now even if she wanted. But next week at this time, (knock a big ole piece of wood), she’ll be home, or maybe even on the playground with her sister.

And so it begins. (Fontan)

2010-05-28T06:21:00.000-07:00

Luna looking like a day at the beach the day after her surgery.

Yesterday Luna had her Fontan surgery. We had just been here about a month ago. The Architect and I once again rose at pre-dawn and precariously lifted Luna out of her crib and gently slid her into her car seat for our drive into Boston. We know the routine now. First it’s to Admitting for a 6 am arrival where Luna gets basic vitals taken and NPO status (when did she last eat solids, milk and clear liquids). From Admitting families are taken back to the pre-surgical holding areas. Tight spaces with beds and TVs and two chairs, separated by curtains fashioned from cheap fabric in geometric patterns.

The holding areas are a surreal experience. It’s there you wait for your child to be taken from you, so in our case, they can perform a six hour open heart surgery-in which they will move your child's heart (this detail haunts me, if I keep bringing it up, it’s because I want to desensitize the thought-like how one does from repeating any word fifty times over so it becomes meaningless, almost silly sounding). But luckily The Architect and I were kept busy simply trying to distract Luna from her grumbling tummy, so we had more immediate issues at hand.

After a short wait, anesthesiology came in and administered Katemine-also known for its street name of Special K-to the kids including, of course, Luna. The idea behind giving this powerful narcotic is to make it easier for the kids (and the parents) when it’s time for the doctors to take the child back to the OR. All the children in the holding area, and The Architect whose job it is to compute such things, estimated there were about 20 beds, which meant there must the same number of ORs-were given the happy juice. Within five minutes the mood changed drastically, the holding area was aflutter with children laughing and snorting, and for a moment you could almost pretend you were in a matinee watching Shrek. Luna reacted no differently. Within five minutes of swallowing the vial, Martha Speaks suddenly became the most hilarious thing the child has ever seen.

Once Luna was good and loopy, the anesthesiologists brought her back. She protested a bit, so Paul carried her to a place where she’d get to breathe the "happy strawberry air”. (More trippy drug references, I personally worry about future drug dependence problems for these heart kids than I do about the heart function itself).

The surgery was long-from the time Luna went in to the OR till the time she was wheeled out was about seven hours. Then it took another hour and a half for the team to clean and prep her for the ICU.

When Paul and I arrived in the ICU, she looked like this.

We’ve seen Luna like this so many times, we’re becoming numb. It’s almost like a fear of flying I just kicked for the same reason; the more you do it, the more you become desensitized. Public speaking is exactly the same way. Virtually any fear or phobia, from flying to public speaking to watching your child endure one invasive medical treatment after the other, can be mastered with sheer habit.

So seeing Luna with all the tubing wasn't difficult. It was the drama that unfolded next that was.

Some of you may remember this post I wrote on Luna’s “I do it” nature. Well, even under “enough sedatives to knock an elephant out” (direct quote from her nurse), the little stinker still would not quit. Luna wanted out. With two drainage tubes protruding directly from her heart, a breathing tube jammed down her throat, a catheter, and IVs coming out of each foot, her jugular vein and probably places I didn’t even detect in the tangled mess, the child thrashed and pulled and yanked and heaved to get up from under all her equipment.

Even her surgeon stayed on board to gently hold down her arms.

Finally, Paul and I were asked to leave. My motherly instincts told me it’d be better if she didn’t feel my presence, as all of us moms know, our children behave the worst for us.

Today when we walked in, the storm had passed, and Luna, though still somewhat constrained, dozed in and out in front of Curious George.

Her nurse told me later they had to administer something called a ‘Kamikaze Wean”. This, in short, means Luna got her way; that big ole breathing tube came out real fast last night.

In for the Fontan and out with Ear Tubes: Part I

2010-05-02T03:16:00.000-07:00

Last Thursday had been planned for weeks. Years, really. Luna's last of three surgeries, which we knew she would have to endure from the time she was diagnosed, at just 20 weeks gestation, had been scheduled for 6am. The Architect and I spent the entire week leading up to this All Important Date-and one that justly sends many a heart mommy and daddy to the doctor for a refill on sedatives-calling for referrals, booking hotel accommodations, arranging for our four-year-old to sleep over friends’ houses, and coordinating rides to and from school for the before-mentioned four-year-old.

The afternoon before the surgery was scheduled I called Luna's surgeon. Lu's old surgeon took a position at Columbia, and we were to have a new one. This doctor was assigned to us by Luna's esteemed team. I didn't for a minute doubt his competence, but I thought I should at least speak with him before we handed our two-year-old over for a 5 hour surgery.

I had exactly 25 minutes to talk with him before I had to jet off to pick-up the girls from school. Luckily when I placed the call, his secretary put me right through to him. The Surgeon’s voice was clear and calm. Too nervous to even think, I told him that I didn't know what questions to ask. Thankfully the kind surgeon launched into the details of the procedure. Details that have been haunting me ever since.

I had always loosely understood the Fontan. It's the last of three surgeries most single ventricle kids have in order to correct their circulatory system. It’s all about circulation and pressures in these kids. Keep the single-ventricle heart buoyant and don’t ever over-work it, and they will live long healthy lives. As a way of 'paying it forward' while also paying thanks back to the thousands of others before Luna; I had volunteered our daughter for a research study during her Fontan. The study was to determine if two medicines increased recovery time. The results to be published in the very prestigious medical journal aptly titled: Circulation.

In short, the Fontan is required to get the blood flow down to the lower extremities. As Luna stands now, her legs are getting recycled blood-mostly because of gravity. If you look at her little toes, they are indeed quite blue (and cold). So cyanotic in fact, that she thinks that she fashions blue nail polish on her toes. To which I simply keep pretences up, "yep Lu, Sienna has pink nail polish and you have blue!"

What I didn't realize about the Fontan, is that of the three operations these heart warriors have (the BT Shunt, the Glenn and the Fontan), the last is considered true open heart surgery. With the first two, the chest is opened, and the heart is exposed, but mostly the doctors are rerouting arteries around the heart. In the Fontan a 'baffle'-which is a GoreTex mesh-type piece of material-is affixed to a room of the heart. The synthetic material is then used to create a channel inside the heart, one that connects from the vena cava to the pulmonary artery.

And here's the part that nearly caused me to pass out: in Luna's case this will not be a straight forward Fontan. Because of her dextrocardia, her heart will have to be shifted and rotated to where a 'normal' heart sits in order to gain access to the room of the heart called the atrium. (Funny that word should have a double meaning; one that involves the intricate design of an architect, the other, in the case of Luna, involves a crucial piece of a heart surgeon's intricate design). Luna’s atrium, which is where the baffle will be affixed, is not assessable without moving the heart. Because her heart is rotated in her chest-a near perfect mirror image from yours or mine-this means, in clearer terms: Her Heart Will Be Moved Significantly During Surgery.

I'm weak just writing about it.

So I asked the surgeon the ridiculous: “will her heart be placed back to where it was?”

“Yes,” replied the kind surgeon, “we like for the organs to stay where they were, or where they want to be, which in Luna’s case is rotated, and on the right, and protruding slightly in the right chest wall.”

This is true, Luna’s heart can be felt quite well if you pick her up from under the arms-just under her right arm-a fact that has disorientated some of her care takers.

Then I asked another ridiculous question: “Can her heart move after surgery?"

“No,” The Surgeon replied.

Phew, check that off my list of anxieties.

The Surgeon assured me that with many single ventricles, the heart is often dextro, and has to be moved to gain access to the atrium.

The entire surgery will take up to 5 hours and is broken down into these parts:

1 1/2 hours to get lines and Luna anesthetized and stable for surgery.

1 hour to remove scar tissue from last surgeries.

1 1/2 for actual surgery, during which time Luna will be on the lung and heart by-pass machine.

1 hour wrap-up.

But none of this happened. Instead Luna underwent an hour and a half of anesthesia for a five minute procedure to implant ear tubes.

It's all in the routine

2010-04-24T03:50:00.000-07:00

One of the most difficult things about getting your child through a significant surgery, or even a cardiac catheter-a procedure that requires just one night in the hospital-is trying to get the family Back On Track afterwards.

Tuesday morning Luna underwent her catheter. In the doctor’s words, “she looks as great on the inside as she does on the outside”.

Luna and I were at the hospital exactly twenty-five hours. This is nothing in the grand scheme of things. Yet somehow a mere twenty-five hours in the hospital can pull you under and whip you around in the rip tide of domestic upheaval; leaving you gasping for breath trying to keep up with the laundry and dishes that seemed to accumulate, somehow even in the family’s absence. Thursday morning I woke-up in my own bed; grateful and full of fresh perspective once again. As I took in my first cup of coffee, I scanned the house which seemed to glare at me back, resentful that I had left it in such an unruly state. From there the anxiety seeped in.

Since giving birth to Luna I’ve had dozens of conversations with other mothers, many of whom have endured some hardship themselves; a loss of a baby, a sibling, a pregnancy, or God forbid, two or three pregnancies, giving birth to chronically ill or still born babies. The pain and the loss is everywhere. And strangely, or not so strangely perhaps, once one endures a Difficult Thing of some kind, one seems to draw in other people who have too.

“I’ve lost a lot of people in my life”, a colleague said to me recently over a mid-afternoon business lunch.

I’ve noticed each of these survivors, all women in this case (perhaps simply because men just don’t talk like this), keep sane with strict domestic regimens.

One such woman lost a baby at three days old-on Luna’s birthday-on the cardiac floor at Children’s Hospital Boston (my mother’s coy smile immediately comes to mind here, “there’s no such thing as coincidence”, a statement I heard over and over growing-up).

In the morning when I would drop-off Luna in the room where she worked, she and I would compare home regimens.

“It can be 4 am, if someone get’s up, their bed is made right there and then.”

Her statement looped through my mind for weeks after, somehow bringing me satisfaction each time. “This is how we do it”, I thought to myself.

Another mother and I were commiserating over how when our husbands hang around the house, as is the case now with the newly minted Out of Work Architect, they crimp our style. While swapping survival tactics in the school parking lot, she confided in me,“I line dry all of my clothes, but I can’t have a single article of clothing hanging on the drying rack when we go to bed at night.” I nodded in agreement. I understood, completely.

These women all brought me comfort with their domestic must-dos. It’s how we cope. When the Architect washes dishes (inexplicable to begin with, we do indeed have a working dishwasher), without putting the pile of clean dishes away that he’s stacked like precarious Legos on the counter, it feels like nails being run down a chalk board. But after collecting other stories of Regime and Order from mothers, I felt better about my own frustration.

Perhaps now it won't sound so strange that the first thought upon rising in my own bed after Luna’s twenty-five hour stint in the hospital was, “how can I put this house back together?”

Sat-tastic

2010-04-17T10:12:00.000-07:00

Yesterday Luna and I ventured into Boston for her day of pre-cath/pre-Fontan labs. The day was long, the traffic crummy, the weather crummier.

But the doctors, nurses and other specialists at the hospital always make it right. This time, just as we were leaving, a woman came rushing into the waiting room. In her arms, boxed toys were piled high above her chin. Luna managed to grab a Little People Pirate set just as we were leaving.

Luna had X-Rays, blood work, EKG, weight, height, vitals and blood oxygen saturation's, AKA sats, taken. So far, everything looks fine.

But mysteriously her sats are up. WAY up. Luna, very gingerly and sweetly offered up her index finger so the cardiac assistant could fasten a tiny sensor on her appendage. Luna held her hand perfectly steady, and immediately the blood saturation meter took it's read. A steady '94' glared on the machine. There are people out there, who have zero heart issues who might read that. The most anyone can read is 100.

The 'sats', probably more than any other vital, is what keeps us heart parents on our toes. Dropping sats and in for a cath our kids go. High sats, and in for a cath they go.

The catheter fellow I spoke with thought that perhaps she had a venous collateral. Collateral are like streams. The body, in Luna's case, with it's tricked-out circulatory system, gets hungry for oxygen. The result is tributaries shoot off the main veins, and shoot up to the lungs, or sometimes down into other organs, in effort to give the body more oxygen. But really it's not effective, and if we let all these collaterals jump ship off their main rivers, the entire body and all it's organs would not be supported.

I asked the cath fellow a hypothetical question: if Luna's sats are high enough, why even move forward with the Fontan? He explained that the body would be fine with partial circulatory; as is Luna is now, but after say 10 years of this, one would run the risk of stroke, or maybe even death. One main reason, that her lower circulatory system skips her kidneys, which is a natural filter for things like small clots. Blood clots, even those that can only been seen under a microscope, can still cause a lot of grief. Stroke probably being the biggest risk.

Come Tuesday we'll find out if any rebel branches have shot off the main rivers to find recluse on other parts of Luna's body. Luna is 'first case', which means we only have to starve her till 7:30 am-at which time, baring-and fingers crossed-no emergency case bumps her out for a later slot-she'll be given the 'happy juice' before she is brought back for the 3-4 hour procedure. If the doctors find any pesky collaterals, they'll be given a good blast of heat-where upon they will recoil into their submission, bringing Luna's circulatory system back to it's pre-Fontan normalcy.

I Do It!

2010-04-15T08:43:00.000-07:00

“I do it!”

"I DO IT!!”

It’s what comes out of Luna’s mouth, oh at least 99 times a day.

The entire dynamic of our house has shifted. It’s damage control; all day, every day. Even Sienna, our four-year-old is part of the clean-up crew.

In a matter of just a few weeks, Luna has crossed over into the Terrible Two category. With two capital “T’s”.

Inside I’m actually relieved. Relieved because the terrible two’s are all about autonomy; and Luna, through her tantrums, is demonstrating some serious intent. At barely three-feet-high, she cannot negotiate the world like her parents and older sister. And this makes her angry. Fuming mad. And frustrated, and finally sad. The most mundane of house hold tasks-like turning on the TV-usually ends with Luna in a puddle of tears on the floor.

From the moment Luna wakes-up, until I man-handle her into her crib at night, every task at hand is I do it. (Yes I wrote man-handle. Luna is an expert climber, shaming the deftest of any monkey out there. But she hasn’t been able to figure out how to climb into her crib; an event that requires me to wrestle her in, against her will)

Height seems to be a thing for Miss Luna. She desires to experience life from the highest perch she can find. Usually in the morning, this is my antique dresser that is over 4 feet tall, where, in a short visit to the bathroom, I will find Luna sitting proudly on top. In the case of this morning, I found her eating a bowl of cereal with a mischievous grin. (honestly, I’m not sure how she got the bowl up there-in tact-with no spillage).

So, my new worry is how this very spirited, rebellious, strong-willed little girl is going to take to being bed-ridden for a few weeks.

Can we suggest a steady dose of sedatives?

I worry too, because this child gets even ANGRIER if one curtails her efforts to “do it” herself. Last night she wanted to show Daddy how she ‘pees’ on the potty. The Architect isn’t clued-in yet on how to handle this. Luna MUST sit on the big potty, and only has me hold her because she’s already fallen into the basin (that was a good start to the morning). Well, The Architect tried to convince her that the little potty is for her. Her retaliation was to bite him with all her might.

Tomorrow starts our journey through Luna’s cardiac catheter and Fontan. We’ll arrive to Children’s Boston at 7:30 for a day of pre-testing. I’m hoping Luna’s desire to charm others will be stronger than her will to do things all by her big-girl-self. We’ll have X-Rays, blood tests and EKGs to get through. All of which require our New Two to sit still.

You can bet that I'll be holding my breath. My planned mantra for the day, borrowed from Luna, “I (can) do it!”

Single Ventricle Alphabet Soup

2010-04-06T07:42:00.000-07:00

When we first learned Luna’s heart was composed of just one ventricle, the only information I could find on her rare anatomical condition was for Hypoplastic Left Heart Syndrome (HLHS). Because of her unusual heart, bi-weekly echocardiograms at Children’s Boston became part of our regular pre-natal care. And each appointment, where I would sit in a darkened room for close to an hour and a half, while the cardiologist circumferenced my globe-like belly with a forceful probe; I would ask him, “but this baby doesn’t have HLHS?” Kindly, patiently, Dr. Brown would answer my anxious and continuous inquiries the same way each time: “No, this baby’s heart does not fall into the HLHS category of single ventricle formation.”

A recent blog post brought in several comments, many from other heart moms commiserating with me; welcoming us to their pack, Luna is HLHS too, they cheered.

But actually, Luna is not HLHS; she falls into her own unique category for single ventricle kids. Her own acronym still somewhat up for debate, but most professionals have settled on DORV/DIRV-or Double Outlet Right Ventricle/Double Inlet Right Ventricle.

I decided to ask Luna's New Hampshire cardiologist, Dr. Gauthier (Luna has two cards, one in Boston, and one closer to us in NH) for, oh, about the twelfth time how Luna differs from the HLHS kids. One of Dr. Gauthier’s biggest gifts to her patients (or in our case, to the parents of her patients) is her ability to craft the complicated and complex world of the various Congenital Heart Diseases into easily understood metaphors.

This is what she wrote:

“Luna best fits into a ‘single ventricle’ category. This is what it sounds like- for all intents and purposes, she did not divide her heart into two ventricles, and instead of one or the other ventricle being hypoplastic (small), she only formed one (her right), with both internal valves (mitral and tricuspid) entering into this chamber, and both outlets (aorta and pulmonary artery) arising from this chamber-- that is, it would have, if she had formed two outlets. Instead, she formed only one outlet valve, the aortic valve, and the other, the pulmonary valve, was "atretic"- like a door sealed shut- in her case, so poorly formed that it could not be pried open in any way (which can be done in some cases) but instead they had to find a way to surgically bypass this. So she fits into the "double inlet, doublet outlet right ventricle" category complicated by "pulmonary atresia.". This translates to a single ventricle accepting all inflow and pumping all outflow. To make things more complex, her heart formed pointing rightward instead of the normal leftward location, so she has "dextrocardia." And then last, her aortic valve did form, but instead of forming three leaflets, she has only two leaflets opening and shutting. This is the "bicuspid valve". The only significance to this at this stage is that it makes a little clicky sound when it opens but otherwise it works just fine.

HLHS and HRHS are different anatomically and the importance between those two as well as Luna's "single ventricle" version is in the way it is repaired and how much work has to be done to get the blood to flow out to the body. Luna is on the better end of the spectrum compared to HLHS on that front, although similar in that she really only has a right ventricle doing all the work to pump to her body. HRHS has the advantage in that the ventricle that does the pumping is a left ventricle, which is better designed for that purpose, but all three only use one ventricle to pump to the body and the blood is re-routed surgically to drain passively into the lungs (in other words, all three usually wind up with a version of a Fontan, but with varying types of surgery to get the blood to flow to the body and to the lungs).”

Luna turns two!

2010-03-29T03:40:00.000-07:00

Luna surprises herself by successfully blowing out her candles.

On March 11th at 5:23pm, Luna turned two-years old. Luna shares her birthday with Rupert Murdoch (that just makes me laugh...Murdoch, the owner of Fox Network, is naturally considered the most evil figure among Progressives-the irony that our little Lu shares his birthday is not lost).

But some other interesting people share her birthday too. Like the guy who wrote the Hitchhiker's Guide to the Galaxy series, along with Ezra Jack Keats; author and illustrator one of my favorite children's books; A Snowy Day; the first children's book with an urban setting. It's interesting to note that all three of these March 11th personalities are connected the world of publishing.

Luna and I spent her special day together, shopping and doing lunch-alone-while Sienna played at school. In the morning we had her two-year wellness appointment. Dr. Goodnews did the usual ears, mouth, heart routine. Everything looked great. It had been a while since anyone had listened to Luna's heart, so I was holding my breath. While the pediatrician was listening to her, in his smiling-casual-everything-is-rosy-kind-of-way, told me he heard a 'click' in Luna's chest. I'm fairly used to clicks and clanks, and other strange noises doctors glean from pressing a stethoscope against Luna's tiny chest. When I asked Luna's cardiologist later what this meant she responded saying, "rather than a tricuspid valve, Luna's has a bicuspid valve, and the click is a result of that anomaly and means nothing more than if she was a blonde, or redhead or brunette." (For a good, simple set of drawings showing the difference between a tricuspid valve, or normal aortic valve, and a bicuspid valve , click here.)

Luna still walks with a young toddler 'toddle', so we wanted to have the doctor check that out as well. Actually, a better description of Luna's gait would be 'waddle'; which like most things, is adorable at two, and becomes not-so-adorable fairly quickly; like by the age of three. Dr. Goodnews had Luna waddle down the hall and assessed immediately that her toddle-waddle is nothing more than a result of her being a late walker (18 months).

Finally, Luna was measured and weighed. She tips the scale at 25 lbs exactly, measuring 33 1/2 inches tall. She's in the 25 percentile for both, which is just perfect for Lu, and where she's been all along. (Nothing wrong with being petite I say!)

Our appointment ended with an assessment of Luna's verbal skills. Dr. Goodnews asked me how Luna's speech was doing. I explained to him that she's not as verbose as her sister was at this age (seriously thank God, I'm not sure I could handle two kids talking on the level as Sienna).

Dr. Goodnews grilled me on the "does she say this?" series of questions, so I offered the doctor the following dialog that had recently occurred between the girls:

Luna: "Nanu WORK in RESTAURANT!"

Sienna: "Noooooo Looooona, you're too small!"

Luna: "Nanu can work in RESTAURANT!"

Sienna: "Nooooo Loooona, they won't let you! You're too little".

(continue dialog for 20 minutes until both girls spill over into shrieks and cries.)

Dr. Goodnews seemed pleased with this exchange, and just nodded his head and said, "She's right on track."

Sweet Relief; House passes Senate Health Care Reform Bill.

2010-03-22T07:02:00.000-07:00

Where to begin? Heath care reform passed last night. Health care reform passed last night!!!

This morning when I got out of bed-alarmless, and before kids-the first thing I did was check my iphone. I refreshed the New York Times app, and there, the first feed read; Obama Hails Vote on Health Care as Answering ‘the call of history’.

And I have not stopped crying since. Luckily it’s Monday and I don’t have kids underfoot; because my four-year-old couldn’t understand why I was tearing-up. "Because I'm so happy!" I explained to her, but she just wrinkled her nose and shook her head. As I was driving the girls to school; I tried to explain to her that an important bill passed…”a bill that will make it easier and more affordable for everyone to get the important medicines they need.”

Sienna paused for a moment, trying to make sense of what I just had said.

Then she followed-up with, “where”.

“In Washington DC” I explained.

“Wash…..shonton….Deeeee…Ceee?

“Yeah, that’s where Obama lives”.

I could see an unsteady smile gradually spread across her face in the rearview mirror.

This part she got. She knows Obama, one of her many famous quotes can be found here when she was two-years-old. Somehow she thought the ‘O’ in Obama was a possessive. (perhaps because of the spirited tone of the anchormen and women speaking either in favor of-or against of the then-candidate during the election). So Obama became “My Bama” to Sienna.

What I didn’t explain to Sienna because Luna was sitting in the car seat next to her; is that this bill prevents insurance companies from dropping children with pre-existing conditions, while also eliminating lifetime caps, and finally prevents insurance companies from hiking rates and deductibles on families and individuals who place a lot of claims. (as all three of these measures directly protect Luna).

So, instead of explaining all of this to the precocious four-year-old, I drove down the windy country road, all three of us in silence. And for the first time, on a deeper, more personal level, I could understand what it felt like just moments after Obama was elected into office, when camera angle after camera angle depicted a black man or woman weeping. “These tears are real”, as my four-year-old often says, defending her emotions. Yes Sienna, real tears of joy.

Luna’s Stage Three Open Heart Repair has been scheduled.

2010-03-15T13:22:00.001-07:00

Luna at Panera Bread on her 2nd birthday; where she ditched her kiddie meal in favor of Mama's Broccoli Cheddar soup.

I had planned on posting about Luna’s 2nd birthday and her subsequent wellness appointment with her pediatrician when I got The Call from Children’s Hospital Boston.

If you ever wondered how these surgeries work; a liaison from the cardiac department calls and gives you the dates and logistics of your child’s upcoming appointments.

We had known all along that Luna would be going in for her sedated echocardiogram and (exploratory) cardiac catheter. What I didn’t know is that her Fontan surgery-last in the series of three surgeries to repair single ventricle anomalies-would be scheduled the Monday after Luna is discharged from her catheter.

So, this is what we’re looking at:

Wednesday, April 28th we’ll arrive at the brisk hour of 7:30 am to Boston for a day of catheter pre-tests, blood work, chest X-Rays and an EKG.

The next day Luna will undergo two exploratory procedures so her medical team can acquire two-dimensional and three-dimensional photos and live footage of her heart and arteries, both from the inside and outside of her body; these being the catheter and echocardiogram. For these procedures the young kids are fully anesthetized (there’s just no reasoning this kind of procedure to a two-year old-and adult can lay still for hours on end, not so much with a toddler).

Because she will be under general anesthesia she will stay the night for observation and be discharged the next day; Friday April 30th.

And here comes the surprise: Luna will then be admitted Monday May 3rd for her Fontan surgery.

It should be noted that the Fontan doesn’t pose any greater risk for her than either of her prior surgeries. The recovery is expected to be about a week. While the age of the Fontan kids (typically two-to-four-years-old) is better than the earlier surgeries in some respects (bigger, stronger, immune system has had time to beef-up), we’re still talking toddlers here. And just their developmental age-the stubborn phase-can keep them in the hospital a day longer. (for a good and easy-to-read-and-understand written description on the Fontan, click here.)

When I asked Luna’s cardiologist if there was any risk with having the surgery right on the heels of the catheter, she said “absolutely not.” Logistically it can be easier for the families as well, which can be summed up like this: let’s get this done and behind us-and all at once please.

There is a chance the surgery could be pushed back a week or so; and that depends upon who her medical team is made up of. Her lead surgeon and one of the most seasoned and senior of the cardiac department left to take another opportunity at Columbia Hospital. But thank goodness we’re talking Children’s Boston here, so there are a handful of other just as senior surgeons who will operate. (The rarity of her anatomy, especially her dextrocardia and ‘mirror imaged’ heart placement can and does keep even the senior surgeons on their toes-but I imagine because of her ‘uniqueness’ she does draw top talent who come across such special anatomy only a handful of times in their career).

So, for now it’s a go. Luna’s primary cardiologist here in New Hampshire will get back to us on who Luna’s dream team will be; and from there it’s on to the next leg of the journey.

More insidious than stealing money, Insurance Companies Steal our Time

2010-03-08T12:04:00.000-08:00

Luna practices taking her shoes off before her Synagis injection.

Last week was truly one of the most difficult of my life. Many of you (and I cannot thank enough those who sent emails, tweets and comments of support, you literally carried me through) followed along as I tried in vein to get Luna her last Synagis shot of the season.

The week came to a triumphant end on Friday when I received a phone call from a woman at WellPoint, the parent company of Anthem, and center of loads of negative media attention over the last several weeks; as the CEO was called to testify before congress to defend her nearly 10 million dollar a year salary (a mix of salary and stock options, this number does not include her private jet usage another other perks). WellPoint and subsequently Anthem, earn their profits through the percentage of their earnings that don’t go to healthcare; paying doctors or for medicines and treatments. In other words, it doesn’t take much to connect the dots on why the insurance companies would have virtually no incentive to pay for the costly Synagis treatments. And it is this very jump in profits, during the deepest recession in 80 years, that has caught the eye of Congress.

The WellPoint representative called to say she was following up to my letters I had sent earlier in the week. (I had sent a letter along with my blog posts to both Anthem and Precision RX customer service.)

And apparently I caught the attention of the CEO of Anthem.

But back to WellPoint for a moment. The woman who called was incredibly kind. She said that she was following-up to make sure the Synagis was shipped to Luna’s pediatrician. I told her, "Yes, I had received a phone call from our doctor's this morning confirming delivery".

She went on to say they she was reading my blog, and she and her colleagues at WellPoint, along with her colleagues at Anthem were cheering Luna on.

I was touched. Really. I almost burst out into tears.

But then she went on to say that: lot's of people complain, but I had written in such a compelling way that I wasn't pointing fingers, or ranting, I had told a story about a little girl who was not getting her medicines.

I was honestly moved by our conversation and flattered by her kind words...but I still felt a sour taste bubble-up in the back of my throat. I happen to write for a profession. And I offer social media and publicist services to those in the home and garden industry. And to date I have successfully reversed nearly $8,000 in denied claims through the power of twitter.

But what about those who don't write, tweet and blog for a living? I am, in a sense, an expert complainer. And even I sometimes don't communicate the best I can-simply because I am exhausted in trying to keep up with this thing we’ll simply-call-the-insurance-madness, ON TOP of running my business, along with...you know...that other duty that still no one has given any real value to; that of course being a mother.

So, while I appreciate the kind words, is this really the best we can do?

Perhaps my biggest complaint of all is the time that Anthem steals from me. Last week I put at least 80% of my work time into what many of us call The Synagis Nightmare. Time that is not just taken from me, but since I represent architects, designers and photographers, we can justifiably say that Anthem stole their time as well. And time is money. If I'm not out pitching, writing, blogging and tweeting for my clients; it's only diminishing my efforts to land them more clients.

Since posting on the topic; dozens of mothers and fathers have emailed or stopped me to say their Synagis has been discontinued for their preemie, heart baby, or child with cystic fibrosis.

Which once again begs the question: why do the makers of these powerful and lifesaving drugs bother to tease us? If no one can afford them, and the insurance companies have no incentives at all to pay for them; then what is the point?

And back to Luna's Synagis shot. It dropped from $2791.64 to $1825.13, still no one has been able to tell me why. Just a week ago, before I blogged about the topic, the shot would have cost our family nearly $1000 more.

Synagis Follow-up

2010-03-04T12:37:00.000-08:00

Yesterday I posted a blog about, how Luna and I were treated like circus animals (as described brilliantly by one of my friends)-all in our quest to get our two year old a much-needed and time-sensitive shot called Synagis.

Just after I posted my blog about the Synagis/Anthem/Precision RX heist, I sent the post, along with an email to the aforementioned parties.

By 6pm when I heard nothing from any of the three, I have to say, I was feeling flat-out depressed and started contemplating how I could get my family out of this country, and into a more civilized nation; one where healthcare runs smoothly and affordably-and one where half the population isn't crying government takeover (a very clever and carefully crafted message to instill the very outcome it's generated).

Finally, last evening I checked my email around 7:30pm and a rep from Anthem had written to say "thank you for the note" and asked me what state we were in-to which I replied immediately: New Hampshire.

About a half hour ago, Precision RX, the suppliers of Synagis, the shot that Luna is now about 3 weeks over due for; called to follow-up.

This is what the very kind (and really, the reps-all women-are truly nice, it's the system that is maddening) said:

"Renata from the pharmacy solutions department at Anthem called to say that your co-pay for the drug would be $1825.13, and to go ahead and process it immediately".

This new figure of $1825.13 is indeed wonderful news, a vast improvement over the original $2791.64 that was due.

And somehow (as in it took a day of blogging, tweeting, emails and phone calls) everyone is perfectly fine with billing the balance after the $800 down payment into monthly payments of $512.57

I asked the Precision Rep why the co-pay dropped nearly $1000, and she could not answer.

Footnote: I actually had a few angry commentors to my previous post, one in particular called me, "full of crap". I think the most diplomatic rebuttal is to say, I love business, and if you are selling hand bags, furniture, jeans, paper clips and even coffee; by all means, sell for the highest you can!

But when it comes to lifesaving drugs, medicines, and medical treatment for kids (and adults); shouldn't we be a bit more transparent with the cost and yes, fixed with the fees for these services?

The Synagis Scam

2010-03-03T06:17:00.000-08:00

Synagis is the brand name for an inoculation that is given to high risk babies and toddlers to stave off RSV. During the RSV season, which is said to run from October to April, our special kids (sometimes referred to as chronic-yuck) are brought into to their pediatrician every 30 days to receive the biggest, sharpest, longest, scariest injection you've ever in your life seen. And I'm not exaggerating here, even the nurses and doctors will admit, it's a beast. So much so, that my 4 year old, who typically joins Luna and me to these nerve racking appointments, has coined the term 'points' for the injection.

Medically-needy kids (another term I loathe, but I don't have the time to invent a new vocabulary...at least right now) are perscribed to receive the shot from birth until they reach 24 months of age. Luna technically has just one more shot to receive, since she will be 2 a week from tomorrow; but since she is going in for her Fontan surgery early this summer, it is advised that she gets the inoculation through the end of the season-which would mean vaccinating her into April).

What is medically advised and what one can afford are two totally different things. A thought, which apparently, none of the drug makers care to consider.

Two weeks ago I started making my regular calls to the two pharmacies we use to order the medicine. Ascend Specialty RX, which is local-ish to us, and located in Portland, Maine is wonderful to deal with. Only problem is they will not accept a payment plan. Period. And I think (need to look further into this) the reason is, their contracts with the Big Insurance Companies don't allow it.

This of course begs the question: why is an insurance company dictating how and when and essentially what kind of treatment we receive? To paraphrase someone's tweet on twitter last week: I think the big disconnect here is that insurance is not healthcare.

After learning Ascend couldn't accommodate a payment schedule, I moved on to Precision RX. They are located in Indiana, and while most of the reps I deal with there are pleasant enough, the company is completely inept.

On February 22nd, after about 2 hours of calls and wait times, I was assured it would be okay to pay an initial payment of $800 with monthly payments of $500 thereafter, for the remaining of the balance. (another tidbit of information here, the total price at Ascend, for the same shot, same exact dosage was $2400. At Precision, once it was determined that we would need a payment plan, that price climbed an additional $392 to $2791.64).

Disgusted, but determined to get Luna inoculated, I gave the rep our HSA account number, she deducted the $800 and the shot was scheduled to be shipped to Luna's pediatrician the following week.

Not so fast.

Yesterday morning I managed to get the girls up and out, so I could drop Sienna at school then race the 30 miles to Luna's doctor to make the 9am appointment.

The two of us tumbled into the office at the stroke of 9, and were immediately ushered into the tiny, dated examining room.

The nurse walked in a few moments later to explain there is no Synagis shot in the fridge.

Reeling, and knowing just what was happening...(I learned last year that if you need to go on a payment plan for these shots you are stonewalled; sure in this country you can finance your house, your car, your mattress, but a medically necessary shot for your child; nope, can't be done).

So I bundled Luna back-up, strapped her into her car seat and called Precision, putting the phone on speaker so I could get a head start the 30 mile drive back to Luna's school.

Finally after about five minutes on hold, then another five while the rep spoke with a supervisor I was told something along these lines: The shot was cancelled, something to do with Anthem not giving the proper referral, yes ma'am we'll look into it...our supervisor is on it...we'll call you later today.

It's now 9:30 the following morning, and I have yet to hear a word

Fundraiser for Luna

2010-03-01T10:32:00.000-08:00

A few friends have brought up the idea of having a fundraiser for Luna. The idea inspired, frightened and humbled me all at once. I wasn't sure if I was supposed to get the ball rolling on such a lofty undertaking. But before I could even give it much thought the very generous owner of Gymboree Music & Play in Rye, NH has offered, through Seacoast Mother's Association, to organize one herself.

Her name is Marlow Rahn, and just about anyone who has young kids on the New Hampshire Seacoast, and has brought their kids to Gymboree, knows Marlow.

I'll let her put into words what she plans to do, but for now she asked me to write-up a third person account of Luna's heart defects along with the level of care, surgeries she has undergone and will undergo; and subsequent cost of it all.

The fundraiser will run starting the month of April, which is significant since it will be the beginning of Luna's journey through her open heart surgery.

Marlow has asked me to include a selection of photos as well, starting with her birth, including some post-surgery shots, and of course some fun ones depicting our chubby-cheeked sweetness in all her glory. (the photos are chronologically backwards, starting with the most recent first...scroll down to see her first days of life)

So, for those of you who have been following her story since her birth, this will be a recap; and for those of you just learning about the amazing Lu, this will be a nice introduction.
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In October of 2007 while just 20 weeks gestational age, Luna’s parents learned the baby they were carrying had a series of rare heart defects. In utero it was difficult-because of the complicated nature of her anatomy-for the doctors to determine exactly what they were. But it was known that she had a single ventricle, enlarged aortic artery, either pulmonary astresia or stenosis, and finally dextrocardia, the condition that made it so challenging for doctor's to decipher her heart; an otherwise harmless condition in which the heart is rotated mirror image from what it should be, and located on the right side of the chest (rather than, of course the left, where most human hearts sit).

Luna's parents were given the choice to either terminate the pregnancy at 21 weeks, or continue with the birth and ensuing three operations that would ultimately reroute her blood flow and keep her alive.

On March 11, 2008 Luna was born, otherwise completely healthy and weighing in at 7 lbs even. On her second day of life she underwent open heart surgery to install the BT shunt-and fared exceptionally well. Not a week after surgery, baby Luna was discharged from the hospital and sent home.

At 6 months of age Luna underwent the Glenn operation-a surgery in which the superior vena cava is rerouted into the right branch of the pulmonary artery; giving the overworked single ventricle a break (since esentially the lone chamber must do the work of the missing half).

After two cardiac catheters (both with angioplasty-to enlarge her left pulmonary artery that had significantly narrowed) and countless echo cardiograms, it was determined by Luna's medical team that she has one single ventricle. Her cardiologist, Dr. Gauthier describes best her condition here:

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). Along with dextrocardia- heart in the right side of her chest instead of left- 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" (pulmonary 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.

Starting next month Luna will undergo more procedures to determine when she will go in for her final and last repair, the Fontan surgery. In layman terms the operation is really, really sophisticated plumbing. Before Luna is operated on she will under-go a sedated echocardiogram and a catheter. Both are exploratory, so her surgeons will know exactly what to expect come the big day.

The cost for these sophisticated surgeries can run a couple hundred thousand dollars each. Most heart kids hit the million or 2 million dollar cap on their lifetime insurance by the time they reach five years old. And Luna is no different. While the family has insurance, budgeting and planning for her care is a moving target. The family's 2010 insurance rates doubled from the year before, mostly because so many claims were placed for Luna's care.

The total family burden for Luna's 2010 care is projected over $20,000. This is before denied claims or out of network issues take affect, which could easily double that amount.

One of the more costly medical needs Luna has is her Synagis shot. During the RSV season, heart babies, young children with upcoming surgeries, and other immune compromised infants and toddlers must get an injection every 30 days to stave off the potentially deadly respiratory disease. The cost for the shot depends upon the child’s weight, and ranges from $2000 to $3700 per shot. Only a few pharmacies in the country administer the inoculation, and all require full payment up front before they will ship the medicine.

Table talk (Thoughts on talking to your young children about an upcoming Fontan procedure)

2010-02-06T15:30:00.000-08:00

Life is pretty much the same at our house as it at any other. The girls are in school Monday through Thursday (still clinging on to that last day of the week with them, but it’s becoming increasingly more difficult with each career leap).

They go to school in our tiny village, and I pick them up around 5 o’clock each day and bring them home. Several nights during the week it’s just us girls-The Architect works in various corners of New England, depending upon the day.

I’m a stickler for eating dinner at the table, with no distraction of TV, phone or other handheld devices. (I will proudly admit that both girls eat pretty well, and I attribute this to my ‘old-fashioned’ regimen of dining at the table).

Two nights ago we were enjoying The Architect’s homemade chili with chips and shredded cheese-for the second night in a row-when Sienna out of the blue said, “Mommy, does Luna need to get a point this week”. I was startled at the child’s-who will be four later this month-astuteness to the topic. I had earlier that day received the call from the pharmacy informing us it was time to ship Luna’s Syngeris shot again. I had shoved the phone conversation to the deepest corner of the brain, not wanting to think about once again where we’ll find $2800 in cash for the shot.

But before I could think much more about it, Sienna continued with, “Luna has a special heart. Her heart is different from mine. That is why she needs so many points.” (Points, if you haven’t already figured out, is Sienna’s word for shot. I love her moniker so much that I don’t bother to correct her).

I decided this would be my chance to start to explain the year ahead.

“Luna will be going to the hospital later this year.” I say as casually as possible.

“But will she be home for bedtime?!” Sienna says,-her voice lifting into a whine-gives me an instant headache.

“Well, she’s going to stay there for a few nights; the doctors have to fix her heart a little more”.

All the while, Luna, sitting across the table from Sienna; is repeating everything we’re both saying, “Nanu stay at the hospital?” only her eyes are about the widest I’d seen.

The exchange lasted for all of five minutes before the girls went on to the topic of dessert. Later that evening, in the midst of changing them into their “cozies”, Sienna threw a temper tantrum-she said over her eyes “feeling tired”-but I wondered if it had to do with what we talked about earlier.

After they went to bed and the house was quiet enough for me to think, I realized the journey through this next heart surgery will be just as much about Sienna as it is Luna. Not only are the girls truly inseparable (even at school there stands just one wall between their class rooms-and I’m told they visit each other often); but from the smell of Purell hand sanitizer, to the beeping of monitors, and even the feel of the weight of a thousand emotions swirling around us; Luna’s experiences will be just as much a part of her older sister’s memories, as they will be her own.

Diapergate: The trials of flying with cardiac (and non-cardiac) kids.

2010-01-25T03:46:00.000-08:00

The girls playing in Sangster International Airport. (A closer look reveals a scrape on Luna's nose incurred from a nasty pool-side spill)

I thought I would follow-up to my last post since basically everything I wrote about CHD kids needing the breathing assistance of a Portable Oxygen Concentrator in-flight was completely wrong.

This past weekend we returned from our family adventure to Montego Bay. I was educated and convinced that Luna's blood-oxygen saturation would dip into the blue zone and worried that just trying to get her on the plane-taking meticulous caution that she not go through the XRay-would send us to a remote detainee room. Well this is what happened with all of that: Nothing.

The week prior to our vacation I had spent hours and hours making arrangements so we could fly with a Portable Oxygen Concentrator in case her sats dropped; in addition to this I made endless phone calls to make sure we had a note in-hand explaining that Luna is filled with various hardware-just to make doubley sure if she beeped going through security that she wouldn't be mistaken for a female-bomber. (Not only was I worried about her beeping and becoming subsequently upset, but we have been cautioned that some of her internal metal could become magnetized through XRay which could shift her anatomy in ways that I don't even want to imagine).

Once we shuffled through security where, incidentally, we didn't even need the note I worked so hard to get (Luna was given a gentle pat down in lieu of the XRay, which strangely, she seemed to enjoy) we then boarded the plane and took our seats in the very last row. Once we reached altitude I watched and waited and waited and watched Luna for signs of blueness. But her Smurf-lips that emerged mid-fall when the weather cooled down never made an appearance. I then decided I would simply don the oxygen on her little round face. This involved placing tubing around the back of her head and then fitting the nose piece just under her nostrils. Well, the child is nearly 2 years old, so you can imagine how that went.

Defeated and getting increasingly panicked, I decided I would sat check the entire family. Sienna, The Architect and myself all read at about 94%. Finally Luna agreed to keep her tiny finger still. Her reads? Well they read a perfect (for her) 83, 84, 85... I keep the monitor on for several minutes and re-checked everyone. The consensus? Cabin pressure is kept at 94-95% oxygen levels, and not the top-of-Mount-Everest-I-can't-breathe-altitude that everyone warned us of.

The Architect, being an Architect and really adept at anything architect-y or involving engineering, physics, math...just about anything where my mind goes completely dormant; had preached this all along. "Cabin pressure is kept at near-to sea-level altitude, think about it!" was he mantra for weeks.

Oh well, an ounce of prevention equals a pound of cure. Our biggest challenge during the flight was bringing Sienna to the bathroom every-five-minutes. A bounce of turbulence would send the overly-dramatic near-four year old into a lovely spread eagle, with both hands cupped over her crotch complete with her screaming, "Moooommmmy, the pee is coming out nooowwwwwww". And each time I took her to the pint-sized bathroom I had to hug her legs while she peed so she "wouldn't fall in the potty and out of the airplane."

But perhaps the biggest upset of all was when the flight attendants sitting in the back with us, more than a little fatigued with their Boston to MoBay route, grabbed the microphone to make this announcement: "Ladies and gentleman, would the person responsible for leaving the dirty diaper on the floor of the bathroom please come forward to remove it." All eyes settle on our (innocent) family of four. I smiled nicely and mouthed "IT WASN'T US".

No one ever came forward. And after the five plus hours of flying we landed smoothly in sunny, muggy, hazy and hot Montego Bay. The pilot announced our arrival and the entire jammed-packed plane erupted into applause. The girls, like all kids, love clapping and joined right in. And with that Diapergate was quickly forgotten.

Up in the Air

2010-01-12T03:26:00.000-08:00

The girls play a game of 'make like a statue', while taking their SATS (blood oxygen level). **Note, neither read is accurate, the spot-odometer will not record properly with movement.

This coming Saturday we are taking a family trip to Jamaica. We booked our direct flights from Boston to Montego Bay a full year ago. Traveling with a family, especially with Luna, who will need the assistance of a Portable Oxygen Concentrator (POC) to breath at 33,000 feet; we just didn't want to mess around with lay overs. Just get us there in one foul swoop please.

As you can imagine, trying to obtain a POC in this post-9/11 world and post Christmas Day scare is no easy task. I personally have put about 10 hours or so into this effort. I thought I would document and post for the world the ABC's of air travel with Portable Oxygen Concentrators.

There are two different kinds of POCs; Continuous Flow and Pulse Dose. Luna's cardiologist prescribed the continuous dose, and with further research I learned this is why: Luna is only 22 months old and she has never been fitted with oxygen. Her sats sit at about 85% now at sea level, which simply put means; she can function just fine. However, put her up in the air, at the altitude equivalent of standing on a really high mountain, and her sats could be as low as the high 60's. She can hang there for about an hour (as prescribed by her cardiologist), so for the 4 hour trip, we've arranged for her to have an oxygen tank. Luna will travel with a continuous flow POC which was a little tougher to obtain for the flight-because of it's larger size. A pulse dose does just what the title suggests: bursts of oxygen are released from the contraption every minute or so. An adult can regulate to this pattern and take deep breathes on call. A 22 month old, not so much.

But the airlines are not all that crazy about having people wheel a tank of air (a combustible, no less) the size of a small piece of luggage on to the airplane.

You'll want to check with your airline, but don't be fooled into thinking you need to use their oxygen vendor. I called and was directed to this page at www.usairways.com There you will be able to download and print a physicians statement. And you will also find a link for Oxygen To Go-the advertised vendor on the site. If you have a little one flying, don't even bother calling; they will tell you you can only fly with pulse dose-but after a lot more digging I found that this is the unit you need, and it does supply continuous oxygen flow, and most importantly, it's FAA Approved.

Since we live in New Hampshire I used Keene Medical supply who are very nice to deal with. I went in yesterday to order and I will be back on Friday with Luna to pick up the unit and do a test run while I have her with me.

Insurance: another area where I wasted an hour of my life, so here is the quick lowdown: If your kid needs oxygen on a regular basis, you will have no problem getting it covered. Well, thankfully Luna doesn't fall into that category, so this is how the conversation went with me:

Me: "I really want the rental cost of this to go against our deductible."

Anthem: "Well, our policy is if the patient needs oxygen all the time, then we cover, if not, then typically not."

Me: "that shouldn't matter, she *needs* it to fly, and that is the issue here".

The subtext of course reads: "You don't *need* to fly."

I guess we all have different needs.

The claim is still pending, but since I need to reach our deductible anyway, I can anticipate paying $235 for the unit and another $50 for the batteries. The rental is good for a month. This is actually a good price.

So, wish us luck as we embark on our family adventure. Here's to hoping everything will be, as they say in Jamaica, "Irie Mon!"

The Anthem who stole Christmas

2009-12-28T13:02:00.000-08:00

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 company...how 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.

Luna's bi-annual cardiologist check-up.

2009-12-08T08:19:00.000-08:00

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?"

Luna:

"Yes"

Cindy:

"How about this?"

Luna:

"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.

Double Inlet Right Ventricle

2009-11-29T05:26:00.000-08:00

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."

My conversation with Joe Lieberman's office.

2009-11-05T07:50:00.001-08:00

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.

Silence.

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.

Silence.

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".

Walk this way!

2009-09-15T05:59:00.000-07:00

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.

What's in a bowl of stupid?

2009-08-12T03:44:00.000-07:00

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 said...at 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!

The High Cost of a Heart Kid

2009-07-22T00:24:00.000-07:00

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.

Summer At Last

2009-07-14T01:43:00.000-07:00

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.

An Event That Changed My Life

2009-06-14T06:43:00.000-07:00

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.

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

2009-06-01T02:01:00.000-07:00

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 cousins...me? 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.

Afraid of the Dark

2009-05-18T03:25:00.001-07:00

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."

Life is Blue-tiful!

2009-04-30T02:41:00.001-07:00

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. (!!)

Official Diagnosis...

2009-04-21T02:41:00.000-07:00

...as 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?

A Brand New Day.

2009-04-17T03:25:00.000-07:00

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 stuff...you 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.

Luna's status update:

2009-04-16T17:49:00.000-07:00

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:

2009-04-16T14:55:00.000-07:00

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

Luna's status update:

2009-04-16T11:16:00.001-07:00

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.

Pre-cath, check!

2009-04-14T17:08:00.000-07:00

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 heart-while.it'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?

Luna's status update:

2009-04-13T00:41:00.000-07:00

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

The renegade blood vessle.

2009-04-01T12:34:00.001-07:00

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 echo...to 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...

The Day of Firsts.

2009-03-31T07:40:00.000-07:00

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?

Luna's status update.

2009-03-30T05:38:00.000-07:00

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

Luna is one year old!

2009-03-23T18:08:00.001-07:00

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.

It ain't always easy.

2009-03-10T02:55:00.001-07:00

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.

For your viewing pleasure.

2009-02-18T02:51:00.000-08:00

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, Luna...in 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.

The Forest for the Trees

2009-02-11T02:13:00.000-08:00

Yesterday was the big sedated echo in Boston. The day for the most part was pleasantly routine. The drive in was a breeze. I got to sit in the back seat of our 4-Runner, wedged between two huge Brittax car seats. The purpose of me sitting back there was to keep lil' Lu awake. And, it worked! Paul chauffeured while Luna and I read, played peak-a-boo and sang The Wheels on the Bus (okay, I sang, Lu looked on and giggled).

Once we arrived to Children's things moved quickly. Luna was weighed (in metric-pediatrics is done in all metric-and I think she was 8.76 km-I probably have that totally wrong, and if any math nerd wants to translate that to lbs, please feel free!).

We then were ushed to the tiny sedation room where Luna was given the Chloral Hydrate. The medicine smells and tastes foul, but Luna sucked it all down and was almost immediately intoxicated. Seriously, I've said this before, but watching a drunk baby is truly cute. That might be considered unhealthy, but hey, it's great amusement for the otherwise un-amusing hospital experience.

A fire alarm went off just as Luna was succumbing to the sedation. Neither Paul or I budged. Which is scary-and rather titanic-like-we both simply thought it was a test. A few moments later a nurse busted in to say toast was on fire on the cafe and can we follow her NOW to the 6th floor where there was another echo room we could use. (we were on the 2nd floor and directly above the cafeteria-it should be noted that the Architect was dubious of the burnt toast story-he mumbled something about duct work and the HVAC system shutting down...)

Eventually Luna was settled into the dark room for her test. And Paul and I took the opportunity to grab lunch (not in the cafe).

After the echo, we all met back at the sedation room. Luna emerged from her sedated state good and loopy-and thirsty.

Finally, Dr. Brown, Luna's Boston card-came in to discuss what he saw in her echo. The first thing he said, was that her heart function and valves are looking great. He seemed amazed at just how great she looks-and states this often.

But then he quickly follow-up with a bomb (at least for me, Paul didn't seem so shocked), saying her left pulmonary valve has narrowed again. I wasn't expecting this, though as Paul reminded me, it could take more than one cath to keep it open. The other two wild cards the doctor delivered were: her aorta has a narrowing. This is COMPLETE news to me, and has me confused. I didn't know the aorta actually narrowed?! And the other bit of information is that she has some blood vessels that may have to be cauterized when she goes in for the cath. The blood vessels-or more accurately one vessel-could have formed when Luna's sats were a bit lower pre-Glenn. I *think* it's actually a good thing, and shows her resilience-as it's her body's way of accommodating her unusual anatomy.

All and all the doctor seemed pleased-if not downright surprised-at how well she does with her special anatomy. And I'm guessing since our conversation was not more than 90 seconds, that none of this is really any big deal. (I also should mention that during the echo Luna's sats were reading 93!!!! This is beyond incredible...my own sats typically read 96-98!!).

So, where do we go from here? Well, Luna's team will review the echo (her team is her cath tech, heart surgeon, and Boston and NH cards) to decide how quickly she needs her cath.

Really, this is preventative stuff. Treatments that will keep her healthy and growing for years to come. Like I said, forest for the trees.

Luna's 1 year (gasp!) sedated echo.

2009-02-08T05:18:00.000-08:00

I thought I still had months before Luna turned one year old. I mean, everyone, including myself, still sees her as 4 months (my friend Sarah who lives in NJ asks me every time if she's sitting up yet. Um, yes Sarah, she's 11 months!!). And with life's happenings-both good and bad-smattering and battering us, I have not even blogged or told anyone that Luna goes in for her sedated echo cardiogram THIS TUESDAY(!!).

So, what does this mean? Well, for her entire 11 months of life I have been taking Luna to her NH card (Dr. Gauthier, who I love, love, love). The clinic is amazing, the nurses the best, and as you can tell by my affection for the cardiologist; I'm pretty pleased with her too. However, it's a smaller practice and they do not yet have the capabilities to perform a sedated echo. So, each time I've brought in Luna she's been awake, suffering and squirming through the entire hour long procedure. The plan all along has been when Luna approaches 1 yr old, she'll come into Boston for a sedated echo so the doctors may really get a good look at her. Basically it comes down to this: babies between the ages of one and just about two, won't lie down and have a probe pressed against them for an hour, so the doctor's have to knock them out.

The worst part of this procedure is having to starve the poor babies before the sedation. Luna cannot eat or drink beyond 4:30 Tuesday morning. What this means for Mama is I'll wake her at 3:45am to give her a bottle. Then the Architect and I get to make the hour and half ride into Boston for a 10am check-in. During the trip, I get to sit in the back seat and perform tricks so Luna stays awake. (the liquid sedation may not work if Luna has been sleeping for 2 hours prior). Luna will at that point be starved, so she may not be amused by my antics.

Since I've been through this before I know what to expect. The medicine tastes awful so I know Luna will object. However, last time I took her in she was not yet three months old, now she's nearly a year-and feisty. It's not going to be pretty.

Once Luna is knocked out Paul and I will wait while the echo is performed. The results are always immediate (like reading a fetal ultrasound).

So, think of us this coming Tuesday...prayers and general good vibes are kindly being accepted.

Wading through the insurance muck.

2009-01-21T10:52:00.000-08:00

Just a quick note to say I have spent over 2 hours on the phone today; all in effort to essentially figure out how to PAY for our very beloved, and very expensive child.

Next week Luna will receive her third synergis shot. Wanna guess how much the co-pay is? $25 you say? try $2500.00!! Actually $2511.98 to be exact. The best part is after 2 hours of back and forth, trying to get on a payment plan, but then realizing I needed to get off the phone with the pharmacy, and have them get on the phone with the insurance company because the payment plan HAS to start with them (Anthem in our case); we realized the pharmacy who doles out the shot had the wrong insurance information!

So, back to the drawing board... next up, calling Early Support and Services to get someone out here to evaluate the medical marvel also known as Luna.

Stay tuned for more insurance fun next time...

The New Lu

2009-01-17T03:48:00.000-08:00

Mothers and fathers who have kids older than 12 months will understand completely what I'm about to describe. It's a finite moment when suddenly, your once innocent and immobile baby, now seems to have batteries. Batteries that are completely charged and running at full power. Gone are the days when you buzz around the kitchen while your baby sits quietly with a basket full of toys. Everything in the house is a liability; the cat, the bunny...and nothing goes unnoticed from the emerging toddler-monster toddling the halls.

This is where we are with Luna. The cuddly, kissy, baby, who not to long ago would cling to me for dear life, now lunges from my arms in the direction of the floor, each time I pick her up.
However, this child is still not crawling. So, you're wondering how is she moving all around? Well, as the old saying goes, "where there's a will, there's a way". And Luna has certainly found hers. She scoots on her bum, from one end of the room to the next. (eventually I'll figure out how to post a video, so you may actually witness this for yourself), but for now, you'll just have to trust me. The funny thing about her scoot, is she doesn't use her arms. She sort of bounces on her bum from one end of the house to the other. It's truly hilarious.

Did I mention she's nothing like Sienna?

Sienna is cautious. And has been since she was a baby. She always talks about her Grandmother, and perhaps it's because she feels a connection to her: neither will walk on ice, and neither are particularly daring (at least physically). She's approaching three years old, and still she insists in clinging to my hip every time we venture out into the abnormally-cold-even-for-New Hampshire-climale.

Well, Luna, she is just the opposite. The most dangerous corners of the house are what fascinates her most. The heat register, "perfect! let me scoot over and try to put my fingers on the tiny blades behind the vent!"
An antique candle stand that is strong enough to hold a single stick..."Sure! let me try to pull myself up on this!" You can almost see the thoughts registering in her young mind.

The most fun are the places Luna goes that I can't get to. Case in point: yesterday I was blow drying my hair while she was playing on the rug in her room just across the hall. Her room is pretty-well child proofed...or so I thought...
With the shrill whistle of the hair dryer, I couldn't hear what was going on-but again, I had some big wooden puzzles on the floor and a few soft balls, so I thought I was safe for five minutes. I look over one minute and see Lu playing. Then I look over the next, and she is GONE. I thought she had managed to scoot under her crib (she has a penchant for getting trapped under large furniture..)
Then I noticed the bottom drawer of her armoire was opened. What I saw next was two chubby legs flailing from within.
Yes, Luna had opened a drawer and managed to topple inside.
No harm done. Though I wish I had grabbed a photo of this spectacle, but leaving her with her legs flailing seemed cruel, so I plucked tiny sweaters off her body and pulled her out.

But the fun didn't end there.

I plopped Luna back onto her new pretty rug (with flowers and dots, purple and pink that perfectly match her curtains, crib set and lamp shade) and this time tossed down a few toys that really aren't her toys like Candy Land; thinking that an un-toy would keep her interested. I got back to grooming, which is a luxury these days, and something I hadn't enjoyed in far too long.
Over the buzz of the dryer, I heard a slam. I looked across the hall to see Luna had shut the door.
From the yelps and chirps coming from the other side of the door, I could gather Luna was both pleased with herself but also a little annoyed that she couldn't get the door back open.
This was all great fun, until I realized I couldn't open the door more than a crack to get to her-because she was sitting not one inch away from the solid pine panel.
Each time I would crack the door an inch, Luna would try to push it shut. Squealing with delight each time. After several minutes of this exchange, where I have to admit I was a bit panicked thinking the pre-toddler monster would defeat me, I finally had to reach in and gently push her to the floor so I could sort of roll her away from the large swinging door.
Naturally Luna was furious the game was over and erupted in tears.

Later that night while sitting on the couch, I told Paul-who also happens to be an architect-of the incident. He simply responded with, "that's why in public restrooms, handicapped stalls always swing out".

Luna's 10-month-but supposed to be 9-month appointment.

2009-01-08T14:28:00.000-08:00

Due to one of the million snow storms we've had this winter (ugh, still some 13 weeks or so to go!), we missed Luna's nine month appointment. This morning, just 3 days away from her 10 month birthday we made it in to see Dr. Goodnews.

Coincidentally, we were instructed to go to the same examining room where, not quite two weeks ago, Luna endured her second in a series of six synergist shots. As soon as we entered the tiny, outdated examining room Luna broke out into a full howl. Though it was hard to hear my own thoughts amidst all this vocal protesting (and Sienna's muffled whining from below me), I had to admit...I was rather impressed she remembered the place.

I tried my best to quiet the poor thing. Sienna pushed her face into Luna's, offering her a rotation of silly expressions, which normally would have settled the baby. But Luna is onto this doctor business and she would not have any of it. She kicked and thrashed to the point that I had to restrain her (did I mention this girl packs a punch, and has quite the little temper to boot? Dr. Goodnews, actually said, in response to her thrashing about, "Girl you don't quit do you!") I finally had to thrust a bottle into her near-toothless mouth so Dr. Goodnews could hear what was going on. All and all she sounded great. She has a slight murmur-which are rated on a scale from 1 to 6. Luna is a 1. So nothing to worry about there. (in case you're wondering, many, many of us have a heart murmur, myself included. Really all it means is you can hear the blood flow. And in some cases you can hear changes in the blood flow because of some type of obstruction or in the case of Luna, a malformation of the organ itself).

Dr. Goodnews also heard a 'clicking' noise. Maybe it's the sheer exhuastion, but the word 'clicking' almost made me laugh out loud. I asked what this 'clicking' meant, and Dr. Goodnews, in his usual Goodnews-y kind of way, just said, "oh it's nothing, just her Glenn". I wasn't sure how her Glenn operation could result in a clicking noise, but didn't press, nor could I press, due to the aforementioned yowling.

Otherwise, Luna looked great. Her ear drums are a bit pink, but she has a tiny cold, much like the rest of the world's kids right now (well, at least in our hemisphere). And she is growing very nicely...she's 26 inches tall and weighs in at 18.7 lb (with a diaper). That puts her right in the 25-30% percentile for growth which is where she's been all along.

The entire examination was over in about 5 minutes, though I felt as though I had just run about 4 miles-at top speed. I packed the girls into the car and took them to daycare and wished I could have been the one sleeping in the backseat.

A Quiet New Year

2008-12-29T11:17:00.002-08:00

Paul and I have initiated and cancelled three separate New Year's Eve plans. One plan, fastidiously and secretly planned by Paul, had us heading north to Montreal. Paul had big plans for us, which included another couple and had us staying at the best hotel and attending 'the' hot event in Montreal.

But leaving Luna behind to live it up in another country is definitely not what this Mama had in mind for the holiday.

While life with Luna seems normal and for the most part it is normal, I think I've gotten used to the level of care, which, while not abnormal, is definitely not what your heart healthy kid endures.

Take for example the synerigist shot. These are shots that Luna will endure, exactly every 28 days for the entire winter season (which here in New Hampshire is a solid, oh eleven months, okay, six anyway). Her next shot, which will be the second of the series, is tomorrow morning. Exactly when we were scheduled to head-off for O-Canada. The 40 minute round trip drive to the doctor's, not including the time in the office, is really not bad. But of course I work out of my home and am my own boss. For a dual working family, the 2 hour procedure that must occur exactly 28 days, is, I imagine a source of stress for many.

I should explain what a synergist shot is. The shot is given to high risk babies to help stave off RSV. RSV is a respiratory disease that can wreck havoc even among perfectly healthy babies. (one of my on-line friends springs to mind...her perfectly healthy 12 month boy endured a hospital stay far longer than any of Luna's. And during which the baby was on oxygen pretty regularly.).

So, you can imagine what a disease like that could do to a baby with already lower-than-normal sats.

Needless to say, leaving my baby behind in her Memere and Pepere's care just didn't sit well.

Then Paul and I decided we'd go out on the town. The 'town' is exactly 3 miles from my house and boasts more restaurants per capita than the Big Apple. If, God forbid, we were to receive some type of phone call where we needed to rush home (in reality the call would be in reference to Sienna, the perfect drama queen and not Luna), Paul and I could be home in exactly 15 minutes.

But no one wants to babysit. And not because it's the Big Night, but because no one feels comfortable caring for Luna. I had never even considered this.

I had arranged for a college-aged girl to watch the girls a few hours here and there over the holiday. Paul is on vacation til the 5th and the thought of us dashing off to a movie was so good it felt decadent.

But then my babysitter cancelled. And she cancelled again. Finally, her mother, and a good friend of mine confessed that her daughter just felt too nervous caring for Luna.

My friend delivered this information to me over a glass of wine and the words, like sour grapes, choked me as I listened. I realized, as the sentence "I needed to tell you, and Julie will be upset, but I had to explain the situation..." hovered between us, it wasn't the night and not being able to go out with my husband. It was the reality that heart disease is about so much more. And I would be lying if I said the stigma isn't there. It's there in the way people don't ask about Luna, or how they pretend not to notice the adorable baby right in front of them. I have sensed this on many occasions now, and my friend's words seemed to set-off a back-up system in my memory, where suddenly every incident where extended family, friends, and causal acquaintances seemed not to notice the only baby in the room, came rushing forth.

At the end of the night I was thankful for the honestly from my friend. I had started to breath again, and had tricked myself into thinking things are normal. But they aren't and they never will be. But since I first learned of Lu's diagnosis, my mantra to myself has been, "this heart baby will be the best thing to ever happen to our family". And reflecting back on the year that was, I do believe she is.

A Heart Mama's Guide to Holiday Giving.

2008-12-08T18:24:00.000-08:00

Our visit to see Mr & Mrs Claus. Luna screamed herself purple and now Sienna is so worried Santa won't come because, "Luna was cryin' all over the place on Mrs. Claus' lap!"

It's amazing how much can happen in a baby's life during the six short weeks since I last posted. Luna sprouted her two bottom teeth, she's standing (assisted), clapping, waving, laughing, babbling REALLY loudly, and has endured more shots in the past few weeks than any human should. On Thursday she'll turn a whopping nine months. This is my absolute favorite age in the world of babies. Beginning at around six months when they really start to blossom, watching the personality that emerges makes for a steady stream of joy and wonder. Luna, in her infinite and often unbearable cuteness, brings on the urge in many to simply take a nibble off her generous cheek. When she wakes in the morning she will happily babble and play with her stuffed animals in her crib for hours. Every moment of her life seems to be filled with giggles and yelps and a never ending game of peak-a-boo, always pulling up and yanking down her blanket with such force and zeal. Sometimes she will linger while holding the blanket in front of her face until she finally crumbles into an infectious bout of the giggles.

But don't taunt her or tease her or hold out on feeding her. Then you'll hear it. Sienna will often give her food, and then pull it away. Luna makes it known, often with a good shove, that she will not tolerate such cruel antics. She is developing a strong sense of being which I hope will ground her when she's faced with special challenges, both heart and otherwise.

It's hard to imagine that last year at this time I was chasing a 21 month-old, struggling to keep her pace while my back ached and buckled under the weight of Luna kicking-pounding more like-from inside.

The year, it goes without saying, has been monumental. Another birth by c-section, followed by two open heart surgeries and a very invasive catheter procedure endured by Queen Lu (the surgeries and cath, the c/s was all mine). Though I honestly cannot complain, so many of my heart family companions endure far more hospital stays, for much longer stretches than we did. With this in mind I've come up with a brief list of ideas for holiday giving:

Give blood. Blood donations are at an all time low and the reserves are critically scarce. I read and article recently how hospitals are using blood that is older than they like (yuck). So blood that has been stored, that normally would be discarded after an extended shelf life is being used. Of course, my first thought is, if blood is running short, then most likely it's not shelved for very long. At any rate, I drive by many blood drives a week and they post huge signs of desperation, begging for patrons to stop and roll up their sleeve. The best part of course, is it's free. And you usually get free swag like tee-shirts, snacks, cookies and mugs. Luna, at barely 9 months has already received two (or is it three now?) blood transfusions. In the case of undergoing her catheter to open up her left pulmonary artery, her little body was having trouble retaining safe oxygen levels so blood was administered to boost them up. (the donated blood carried healthy oxygen levels and thus was able to mix with Luna's blood, giving her a much needed boost in her sats). You can easily find out where your local blood drives are by visiting The Red Cross website here.

Gift bags filled with goodies to leave in the family room of any hospital. After the Glenn operation Luna-and all children-are brought up to the ICU where they are hooked-up to their banks of meds. As parents, we are called to the floor and then asked to wait in the family room until your child is stabilized. This is probably THE worst part of the entire experience. Your baby has just endured a major surgery and now you are asked to wait for what seems like an eternity before you can greet your sedated child in her ICU room. As Paul and I entered the Family room (just a small room with a kitchenette, TV and a few toys), someone had left a huge basket of sweets and gourmet popcorns from Au Bon Pain along with a dozen or so gift bags each filled with a toothbrush, tooth paste, travel-sized shampoos, soaps, candy and chips. Really, the gifts were incredibly simple, but to Paul and me it provided a much needed distraction and boost to our low morale.

New toys, strollers, or infant seats. Perhaps your little ones received TOO many gifts and you need, for your own sanity, to unload some. Any Children's hospital will GLADLY take unopened baby gear off your hands. AND if you have the receipt you can use it as a tax write-off.

Cash donations. Maybe you're one of the few this year who had a GREAT year and you need to unload some cash. Any Children's hospital happily assist you. With this not-so-stellar economy even hospitals are struggling (heck, even Harvard University, which practically sits atop the original Boston Children's Hospital building, and provides the education for many of the fellows at CHB, lost 22% of their endowment!). And, if you donate enough you'll even make the Wall of Big Donors in the main lobby.

So, there you go. Four Heart Mama-inspired giving ideas that range in cost from free to the big bucks. You may never know exactly who will receive your gift. But you can be assured that no matter how large or small, your gift will make someones day, and possibly even save a life.

Post Glenn Groove

2008-10-26T02:18:00.000-07:00

It's been just about a solid month since we returned home from the hospital. We've finally settled into a nice groove. It's funny how when you're in the middle of things, say routine things, like the get up, pull kids from cribs, change diapers, make coffee, pour Sienna's milk (first rifle through cupboard for clean sippy cup, matching lid and corresponding valve for lid), get myself dressed, get baby dressed, get toddler dressed while pretending not to be so she can believe she's dressing herself, pack lunches, pack bottles, find clean infant spoon and grab jar of baby food, make sure enough diapers and the right sizes for both girls are in the bag, and on and on throughout the day, every day, seven days a week. Though sometimes it's broken-up, like on the days I go downstairs to work, or on location. Before the Glenn the monotony of these actions could, and often did, put me in a harried and unpleasant state of mind. The petty routines and cyclical nature of make bottle, clean bottle, make lunch, clean lunch mess, dress baby, undress baby then repeat several times a day with each accident, blow-out, or spilled bottle. On my worst days these mindless chores could break me. I think, perhaps when stay-at-home moms feel overwhelmed it's because of the relentless rotation of these simple tasks. Add to the tedium a crying baby and a whiny toddler, and then isolate said mom for seemingly days on end, and it can be the bane of many a woman.

Ironically, however, it was the very monotony I craved while in the hospital. The experience is similar when I fly. I loathe flying. Being trapped in that metal tube, strapped into an uncomfortable seat, breathing in the recycled, artificial air definitely ranks first on my least favorite activities list. Often when I fly, and especially when we hit turbulence, I think of all the things I rather be doing other than sitting strapped into a seat at 30,000 feet. My thoughts become hedges and when turbulence strikes, suddenly I think how yes, I would LOVE to be cleaning the cat litter at this moment. And the dull, yet grotesque task of scrubbing the toilet suddenly becomes just as desirable as sitting on the beach with a good book. Our stays at the hospital conjure up the same type of 'strike a bargain' type thinking. Sitting in the ICU room, while Luna was hooked up to machinery, with just a tiny TV screen and no view other than that of the grey, cement exterior and mostly drawn windows of hospital rooms, I thought to myself I'd give anything to be washing sippy cups and bottles right now. An entire sink full of milk encrusted lids? Not a problem. Oh there's five loads of laundry, and the kitty litter needs to be changed. That's wonderful!

As I sit and write this, a pile of dishes mocks me from the sink, and the clean silverware in the dishwasher, run last night, is begging to be released from their stainless steel cell. In another hour, Sienna will start hollering for me from her crib, and Luna will pound her legs into her mattress, her way of letting me know she's ready for the day. Diapers will be changed, and perhaps bedding too; depending upon how well bottles and sippy cups held up during the night. The dishwasher will be emptied, and last nights dishes will be loaded into the machine. Then Paul and I will make something special for breakfast, something like homemade blueberry pancakes and bacon or something else just as laborious and have another load of dirty dishes to contend with. Yet, now with a fresh perspective and yet another major surgery endured by my baby behind me, but also in me forever, the every day tasks somehow feel lighter. Idely running warm water through a bottle while listening to the tv or radio while Sienna's tiny voice bubbles over just enough for me to hear the conversation (usually entails her in a complicated plot of caring for eight different baby dolls who always seem to need her unyielding attention) and the occasional squeal of Luna surprised once again by her reflection in the mirror, is something to inhale, a seemingly non-moment that has become somehow monumental in its very subtleness.

We're home! (The Glenn Operation: the week in photos):

2008-10-01T11:00:00.000-07:00

Well, Luna proved miraculous and was discharged from the hospital Sunday afternoon. Things are back to normal-sort of. Health-wise Lu is better than anyone expected; in fact, healthy despite the fact she had open heart surgery just a week ago. Emotionally, she's a little off. Yesterday, we had our follow-up with her pediatrician who I'll continue to call Mr. Goodnews because indeed he is full of it. He checked Luna's pulses and felt for any swelling of her organs and on both counts she was fine. Her heart sounded good, lungs clear. I told Dr. Goodnews that she seems spooked from the whole ordeal. I explained how she's having trouble sleeping and how the moment I move from her field of vision she lets out a real "don't leave me I'm terrified" kind of cry. It's painful to see. And at night she will only settle down when she is sandwiched between Paul and me in our bed. Dr. Goodnews, who is nearing retirement and rather old-school, simply said to get her on a routine and not to worry about letting her cry when we put her in her crib-Luna can handle it. He said she suffered a simple case of 'hospitallitis'. So, yesterday during her nap I did just that. I let her cry for about 5 minutes and wouldn't you know she finally settled down into a 2-hour, much needed (for both of us) nap. Here it is Wednesday afternoon, a week ago she was in the OR, and the only ailment she suffers is a minor case of hospitallitis.

A visit from Sienna

2008-09-27T16:10:00.000-07:00

I regret telling everyone I wouldn't be able to access this site. Strangely, this is one of the only sites I can post on. All my usual web haunts are blocked by these stinkin' HIPPA laws, leaving me alone, in a hospital, with a sleeping baby, no book, and about a dozen dog-eared magazines. If that's not bad enough no cell phones are allowed on the floor; and the cafeteria, the only other place I venture out to, is one big dead-zone. Oh, and for some reason, I can't even access the Comcast home page to log-on to my e-mail. So, my word of advice for those of you who have a child undergoing surgery...bring lots of reading material, crosswords, and whatever else excites you. One thing most parents don't even consider is how much down time you'll have during a week or two stay at a hospital-never mind a six week stay which is not all together uncommon for some of these heart kids.

However, the bigger picture is I can stop complaining about my boredom and relish the fact that Luna is doing spectacularly well. The rumor is she might be discharged TOMORROW as in the Sunday after her surgery she had on Wednesday(!!) Today she had her X-Ray which passed with flying colors. From there the nurses took out her pacing wire and then removed the dressing over her heart. After that bout of excitement she had to be put on the monitors for the rest of the afternoon. Her vitals remained the same solid numbers we've seen all along. Meanwhile the hospital tedium was interrupted by a visit from Daddy and Big Sister. Sienna came crashing into Luna's hospital room and wasted no time making herself at home. Luna's balloon, stuffed animals and books that had been bestowed upon her by generous friends now belonged to Sienna. And it only took a moment before our cramped quarters were converted in to a full day-care unit. (for this part of the story to make sense it helps the reader to understand that Sienna runs an at-home daycare. This consists of rotating her 1/2 dozen or so baby dolls in and out of Luna's equipment. Unfortunately, for Sienna the babies are not all on the same schedule so they are fed, burped, diapered and put to bed or into the swing, Bumbo or highchair though out the day, every day).

Finally, in a desperate plea to let Luna (and Daddy) sleep, we left the babies behind and I took Sienna into the hospital playroom. I gazed out of the vast floor to ceiling windows down at the rain-soaked city below while Sienna and a brother-sister duo played. They played nicely, all sharing each others toys. At one point during the afternoon, I heard the older sister say to Sienna as she stuffed a fist full of fake dollars into the toy cart heaped with naked dolls she was pushing, "here is some money, go out and get something nice for your babies."

Around 4pm Sienna and Daddy braced the torrential rain storm to make the drive home. Luna ate solids (applesauce) for the first time since before the surgery, then went to sleep where she's been ever since.

I guess I can log-on afterall

2008-09-26T15:47:00.001-07:00

Okay, well I'm here again. Last time we were in I couldn't pull-up this site. I'm happy to report I'm in the play room on the public computer in the step down unit and Little Luna is here next to me in a stroller (yes, a stroller, not hooked-up to anything, like I could wheel her out the rotating main door if I wanted to be reckless).
Her mood has improved drastically and I promise, her face is back to normal. She still has those silly round band-aids on her chubby cheeks-only because no nurse has volunteered to tear them off. This afternoon after two straight days in a hospital crib and starring at cartoons Luna started to seem, not sick, but bored. She was grunting and fussy and listless so a nurse I've never seen before came to rescue and brought in a stroller. We disconnected Lu from all the monitors (yes, every single one!) and carefully placed her in the carriage. I walked her around the ICU floor for two hours. Let me tell you, what a difference did that make! She perked-up immediately, and was back cooing, smiling and engaging anyone who would look her way with her bright, big eyes. She's so happy in fact that I have yet to take her out and place her in her crib. Dr. Brown came to take a listen-said she sounded great-and strode away with not a word about putting her on the monitors. She is only TWO DAYS POST OPEN HEART SURGERY!! Can you say Superbaby?

Move over Luna, Mama's coming in!

2008-09-26T04:09:00.000-07:00

This morning Paul and I check-out of the hotel. For the next however many nights till Luna comes home I'll be sleeping on the 'sofa-bed' (more like an oversized chair that pulls out) in Luna's room. Paul will go home to relieve his mom of Sienna. Then the two of them will come back in and visit us tomorrow and Sunday. Due to the HIPPA privacy laws I won't be posting until we're home. (Blogs, along with Facebook, are considered social networking sites and they're blocked on the hospital PCs). Good thing there's lots going on in the news, I'm going to have a lot of down time while Luna sleeps!

Thanks so much for all your messages of your support...it really means a lot to us. Bye for now~

The Day After

2008-09-25T18:49:00.000-07:00

It was another long day at the hospital. Because there were no beds available in the step-down unit (aka regular cardiac wing where the kids go when they leave intensive care) Luna stayed in the CICU. It was just as well. Though she is doing perfectly well, actually well ahead of the curve, she was really uncomfortable. Her mood/attitude was somewhere between stoic and resentful. We didn't see a smile out of her all day. Of course, how can we blame her. And she seemed almost angry with me. She wouldn't look at me. She starred at the TV-all. day. long. Health-wise she's in excellent shape. Her sats were rising nicely all day. When we got there in the morning she was in the low seventies, and by the time we left she was in the eighties. She did have the help of a little oxygen-the kind of devise that has two tubes that goes up into your nostrils. She spent much of the day scratching and pulling at it. Luna did what she needed to do in order to prove she was fast-tracking it outta the ICU which consited of eating (tons, 5 bottles in the time we were there and poop (it's a big deal after surgery that your bowels work-poor Lu-she'll read this in as an adult and be mortified). Little by little wires and leads are being taken off of her. For meds she's taking an antibiotic for the drain tube that protrudes from her heart. This is by far the ickiest 'thing', it's a drain bulb that pulls excess blood off her heart. It'll come out tomorrow morning-and will be the last bout of big pain she should endure. Otherwise she's on lasix to pull the excess fluid off her lungs, Tylenol, and morphine as needed. Tonight everything will be pulled from her except for an IV (so they can administer meds as needed), so she'll be almost line-free when she arrives to her new hospital digs tomorrow am. The doctors are predicting she'll be discharged sometime Monday. Fingers crossed. Mama would do anything to be in her own bed watching TV with both girls right now.

Update!

2008-09-25T04:03:00.000-07:00

We just woke-up and called the ICU. Luna had the breathing tube pulled out at 1am along with the line to her neck. She took 4 ounces of Pedialyte by bottle. And the best thing...the nurse said Luna most likely will be booted from the ICU later today!!! WHOOOOWEEEE!!!!
Paul and I are heading over shortly...stay tuned!

The Glenn went smoothly

2008-09-24T15:17:00.000-07:00

The title pretty much says it all. The first part of the day was exactly like yesterday-only this time Sienna stayed home. Paul, Luna and I arrived at the hospital at 7:30 sharp. Luna was whisked into a holding room where she was given an i.d anklet and the same happy juice as yesterday. Two anesthesiologists and the OR nurse greeted us in the pre-op holding room and had us sign consents. One of the consents was for yet another study that we've included Lu in. This one is to measure the velocity of the blood flow from her superior vena cava into her brain pre-Glenn with BT shunt then post-Glenn without shunt. The photos you see here...all that fancy tape on her forehead...that would be part of the study and actually is some type of ultrasound. The lead anesthesiologist is heading-up the study and it's to be published sometime next year. (did I mention this now is Luna's fifth research study and she's earned exactly $200 for her participation? She's a big deal in medical circles).

So, back to this morning. Once Luna was loopy from the sedative they wrapped her in a warmed blanket and carried her away. There is no stranger feeling having your baby taken away for open heart surgery. I literally felt empty-handed.

Paul and I did our best to eat-up the seven hours it took before we saw her again. By the end of the duration we were watching As the World Turns (not only were many of the same actors still on from almost 30 years ago when I would watch with my mom, but I was caught-up on the plot in about two commercial breaks). Finally, at 3:30 Paul and I were called from our soap opera stupor and into the NICU room where Luna was recovering. Her surgery was completely uneventful-yet wonderfully successful. She was stabilized, her blood pressure was a bit high, but nothing over the top. The surgeon patched her LPA, the one that was all kinked. It should, we hope, will be fine, but time will tell on that one (arteries, as we all know can kink and narrow over time, in fact it takes good blood flow (among other things) to keep them open and unrestricted).

The plan ahead is to extubate her tonight around 10pm. Frankly, I'm terrified to see that. Luna needs to be only mildly medicated in order to breath. Which means she will feel the tube coming out. But of course this just will mean she's one step closer to coming home.

Finally, here are some photos. Maybe we're becoming immune, but both Paul and I agreed she doesn't look at bad as last time. I can still see her pouty lips and long lashes, and to me she is beautiful.

MRI & Echo, done!

2008-09-23T17:23:00.000-07:00

It was another relatively easy day for all of us. The four of us trucked into Boston at the crack of dawn and were sitting in the MRI waiting room at exactly 7:30am. We checked in and then waited an hour for a nurse to come get us. I have to tell you...I would say the single worse part of all of this hospital stuff is the wait. Children's Hospital is probably the mecca of medical talent, and you can see it in the multitude of nationalities represented in the patients and their families, but the trade-off is you wait, and wait and wait some more to talk to the doctors. In the case of this mornings wait, the doctors somehow were not informed that we were in the waiting room. Oh well. Least of our problems.

I brought Luna in, and Sienna and Daddy stayed in the waiting room. Once in the patient room I was 'debriefed' on the day ahead. Luna was to be first given an oral sedative to make her drowsy and then they would strap-on the oxygen mask and enter the lines into her veins. Foolish Mama, but I only today realized why they had to completely knock Luna out. This was so they could control her breathing during her MRI, and most importantly, artificially stop her breathing in order to blast off several rounds of photos of her lungs. Since her lungs are such a big deal in the surgery, and her heart condition in general, they needed to be recorded completely and totally still. This hit me like a ton of bricks at 8am, but the nurses all seemed like, 'sure, we stop her breathing and snap off her photos, no big deal'. Like this is something I used to require of couples when I shot weddings. Seriously, that's how calm they were about it. This gave a whole new meaning to 'hold still for the camera'. So, after that nugget of news, they proceeded to give Luna the oral sedative. This had to be the cutest part of the entire day. Hopefully you've never seen a baby drunk, and certainly it's no laughing matter, but under the circumstances I think it's good to find laughs in between all the scary stuff. After just one dose of the pink liquid, Luna immediately started swaying. She sits up now. (Well, almost. Someone needs to be right near her in case she topples over). Well Little Lu sucked back that medicine and she immediately started swaying, giggling and blowing raspberries. I mean, this would have been a winner on AFV, seriously. She continued on in this drunken manner until her eyes drooped shut and her body finally caved to the 'happy juice'. It was adorable. I thought to myself what a perfect way to be whisked away from Mama. (and how could I get my hands on some during tomorrow's surgery).

Once Luna was wheeled away, the three of us had exactly three hours to kill. Park, TV and lunch and we were back. When I returned to the room Luna was sitting up in the hospital crib wearing her johnny, watching TV and looking strangely adult-like. Once she saw me I was greeted by a huge smile. She looked puffy, and still had some lines in her, but otherwise she was great. In fact, the doctors were telling me as she started to come-to during the echo she awoke happy; cooing and gnawing on her oxygen mask. I'm not kidding about this, either! When I saw this child is chill...I mean it!

The end of the day was comprised of waiting and waiting and waiting some more. Luna nursed and fussed out a bit but then fell asleep. Sienna by now was pretty much losing it (been up since 5am, it was 3pm-no nap, you get the picture), so the nurses brought her up to the nurses station and let her 'answer phones'. I can just imagine that phone call...

Finally Dr. Brown came in and said the photos looked great. Her left pulmonary artery is pretty kinked, so they'll fix that, along with removing her shunt and performing the Glenn (bringing down the Superior vena cava vein and tying it into her pulmonary artery).

We got home around 5pm and the girls played as usual. Just another day. Tomorrow Sienna will stay behind with her Grandmother and the three of us report to the hospital for an 8:15am surgery.

The Glenn is upon us.

2008-09-22T17:51:00.000-07:00

I can't believe it, but we're here. Today was pre-op, and honestly, it was a breeze. Maybe I'm just getting used to hospitals and all the tests, but seriously it was e-z. Mama is pretty tired and I have a fresh baked apple pie waiting for me in the kitchen (that Memere made today. She even etched L.V with a heart in the crust, I mean, seriously, how sweet??)

This morning Paul, Luna and I all hit the road at 6:15am for a 7:30 arrival at Children's. Naturally we hit traffic so we were an hour late. But it was fine. The day consisted of an EKG, blood work, then a weight, height, sats, and blood pressure check. Luna continues to grow well (as I said before this babe can eat, eat, eat!!)

Her vitals were perfect. Strangely her sats have improved, despite the fact that she has more than doubled her weight and almost her height. I say strange because as the babies grow, they begin to outgrow their temporary shunts. For whatever reason her sats range from 86 all the way up to 93 (!!).
Her weight is 15.5 lb and she grew a whopping three and half inches since our 4 month appointment. She was born at 19 inches, then she hung out at about 23 inches, and now she is 26.3 inches!!

Along her getting her vitals we talked with her card, and anesthesiologist and several nurses.

The rest of the week goes like this:

Tomorrow: 7:30 am arrival for anesthesia so she may have her MRI and echo. I was a little bummed to find out that rather than ingesting the oral sedation she had for her last sedated echo, Luna will actually be put under general anaesthesia. Yuck. This of course requires her to 'come to' in a recovery room. All for good cause, that is to keep her totally and completely still for the MRI so the doctors may see all organs before she goes in for surgery.

Wednesday: 7.30 am arrival for surgery. We're in the first slot, which is good, less waiting around.

Tomorrow Sienna is joining us, so the four of us will go in together. The hardest part is Luna can't eat after 1:30 tonight. And as I said, this baby can eat.

That's all for now...think happy thoughts for us!

"My Bama"

2008-09-15T16:55:00.000-07:00

With the election less than two months away it's hard for anyone to ignore the all-out media circus going on between the candidates. This includes my 2 1/2 year old as well.

Our morning ritual is this: Paul is up and out of bed at the crack of dawn. I sleep in ('sleep in' being used lightly, as in till maybe 7am) until Sienna wakes me up. And this is the dialog that I am awoken to. Every morning. Seven days a week.

"MAMA!"
"MOM!"
"MAAAAAAAMMMMMMMAAAAAHHHH!"

By now I'm rustled slowly from a dream and begin to realize that Sienna is not calling me from across a vast, grassy field; but in fact she is in the very next room and wants out from her crib.

"MAAAAAMAAAAHHHHH!"
Then a loud thud. And I know from past experience Elephant has been hurled across her room.

"MAAMMAAAAAHHHHHHH I need a diaper change!"
Yes, you would think that when a toddler tells you she needs a diaper change that it's time for the same toddler to lose the Pampers and hit the potty. Not this toddler. I'm pretty sure she'll be wearing her diaper well into the winter. And yes, she does turn three this February.

Finally I stumble into her room and pull Sienna up out of the crib, peel Elephant from off the floor, and change her diaper (Sienna's, not the Elephant's). I deposit Sienna onto my bed, then it's off to get her milk and on the re-bound retrieve her sister. Luna is typically awake in her crib, yet laying still and quiet as a mouse. When I lean over to reach for her, she gives me a big toothless smile and pounds the matress with her chubby leggies.

The three of us flop into bed together, and if Sienna lets me, I put on Good Morning America. Lately the story is about Obama, wife Michelle, Biden, McCain or Palin. Each time Obama flashes on the screen I say to Sienna, "that is Obama. He is running for president and Mommy and Daddy are voting for him"

So, this morning was no different. Us girls laid in bed, and each time Obama appeared on the screen, I would say, "That's Obama". and Sienna, in perfect two-year-old spirit, would fire back, "No, MY BAMA!".

Update on Luna

2008-09-05T11:17:00.001-07:00

I know. It's been almost a month since I posted. What happened was Luna was scheduled to have her Glenn in August. Then, because the surgeons at Children's couldn't accommodate her (I think the Big Guns were on a much deserved summer vacation), and because she is doing so well, her surgery was pushed back to September 24th. I had mentally prepared myself for being on the other side of this by now, so when she was pushed back I took a break from heart stuff. Luna hadn't had a single doctor's visit in six weeks so, really, it was nice to enjoy the entire summer with a our new baby. Just yesterday was her first visit to the card in weeks. Here is the lowdown:

Just shy of 6 months old, Luna weighs exactly 15.2 lb and is smack-dab in the 50% percentile! This is ah-mazing. I was in the 50% percentile at her age (hurrah for Mom for keeping such good records), and I'm not even a special heart baby! Truly, this is no small feat for Miss Lu.

In regards to the last statement regarding Luna's weight. SHE-EATS-ALL-THE-TIME!!! For real. This kid can eat. I'm still nursing her. In addition she typically has about 8 oz. of formula/day, two servings of rice cereal, then any combination of peas, bananas, prunes, sweet potato, carrots and I'm sure I'm missing a few. Luna is a big eater...just like her Mama.

Her surgery is September 24th. My friend Sarah told me 24 is her lucky number, so I'm going with that. Pre-op is Monday the 22nd. And the 23rd Luna will undergo a MRI on Tuesday so the docs can check out all her organs before they go into surgery.

Yesterday at her appointment she had an echo. The doctors also checked her pulse, blood pressure, sats, and weight. Her sats are still hanging right at 85 which is perfect and where they've been since birth. All other vitals were perfect too. The three of us; Sienna, Luna and me all went together. Sienna had a blast. Cindy, the echo specialist played Happy Feet on a big screen TV while Luna was stretched out on the bed for her echo. The lights were dimmed (really to see the echo, but as far as Sienna was concerned it was just like the movie theatre) and lolly pops were passed around. Luna conveniently fell asleep so Cindy was able to talk me through what I was seeing on the monitor. She explained to me what the grainy black and white images meant on the screen. She showed me how Luna's LPA (left pulmonary artery) is looking real good-despite the narrowing. Both arteries show 'turbulent flow'. The very word 'turbulent' sent a spike of fear through me, since naturally all I can think of is being jostled around an airplane at 3000 feet-and as my husband knows from flying with me-is my single biggest fear. In Luna's case her shunt is blasting the blood into her arteries artificially, much like an overflowing funnel. Cindy, the echo 'reader' (and wow is that an art, seriously I often can't make heads or tails of what I'm seeing) explained to me Luna's blood flow is more 'aortic rather than pulmonaritc'. So, in Luna's case, too much push and not enough pull. The Glenn will correct that, and make it so her flow is much like yours and mine.

While Luna's heart is malformed, or 'unique', the heart itself is never touched during the surgeries. Instead it's all about rerouting blood flow and working on normalizing and stabilizing her circulatory system. So, really we can think of Luna as undergoing a sophisticated form of plumbing. Only the pipes are of the human variety.

$42, 944.32

2008-08-07T12:38:00.000-07:00

I'm just now cleaning my office. It's been a while and it's trashed. I guess I take after my dad in that respect. There are just so many better things to do than organize paperwork.

In going through piles and piles of unopened mail I found one envelope with Boston's Children's Hospital listed as the return address. It dates back to June 29, 2008 and states:

Account #XXXXXXX
Account balance: $42, 944.32

This is to inform you that a claim for the below referenced patient has been submitted to your insurance and as of this date, we have yet to receive payment, or a response to the claim. In attempt to resolve issues related to the delay, your assistance is requested in contacting the member services department of your insurer.

Luna Ruth
Service dates: 04/27/08-04/29/08

Sincerely,
Patient Financial Services,
Children's Hospital Boston

Um. Okay.

I checked my calendar and sure enough the dates correlate with Luna's balloon cath. She was in the hospital for a total of two nights. And received blood work, X-Rays, lung scan, anaesthesia, and of course the balloon cath.

Since we never received another notice (though I do still have a mountain of discarded mail sitting on my desk) I assume this was resolved. It seems so long ago. Paul was at a different job at the time. We no longer carry the insurance referenced. I suppose at some point some clerk at Blue Cross ponied-up the 43K. But I wonder if unbeknownst to us, there was a moment, much like the Michael Moore film SICKO where some worker-bee was instructed by her higher-up to toss the bill to the side for a few good billing cycles.

One wonders.

A Day in the Life of Lu.

2008-07-27T03:00:00.000-07:00

I thought it would be important to write about the regular hour-to-hour routine of Lu. Much to Mama's delight, she started sleeping through the night at 4 months. She typically wakes to eat around 5.30am. Luna has a sweet disposition and she is no different when she first wakes. Rather than crying loudly, she instead sort of grunts. I can hear her from our room sucking on her hand and cooing. When I enter her room I'm greeted by her smiling face looking up at me in the inky, predawn light. As soon as she sees me, she starts smiling, snorting and kicking her feet in excitement. I have never been a morning person, in fact, I could be the one counted on for waking last, but thinking of Luna's toothless grin is enough to pull me out of bed at dawn.

After I nurse her I put her back into her crib, where she sometimes sleeps till close till 9am. This gives me plenty of time to tend to Sienna, which typically means filling her sippy cup at least three times with soy milk, looking for her elephant and blankie at least 2 times, and serving 2 breakfasts (one early bowl of cereal and then a mid-morning waffle or english muffin served with lots of fruit) all while the voices of Elmo, Bert and Ernie chirp from the television.

When Luna wakes for the second time in the morning she is just as happy as she was the first time around. By this time Mama has had her fill on coffee and greets Luna just like this, "Gooooood morning LU!" Luna in return kicks her chubby legs and flaps her arms and smiles and coos. After a diaper change I give her .5 ccs of Lasix, which I suspect she no longer needs. She's on a tiny dose to begin with, and all her doctors have been on the fence whether she even needs it. One nurse at Children's told me if I see less and less wet diapers then that's my signal to take her off the diuretic. Just last night, it finally occurred to me, for the amount I nurse her, she really doesn't have soaked-wet diapers. When I gently pulled her out of her swing after a four hour snooze and changed her diaper, I discovered it was bone dry. I decided this was my cue that she doesn't need the med. I'll confirm this with her doctor this week.

Our days are hectic and busy, but fun and filled with the kind of stuff that makes for good childhood memories. Our big decision for the day is will we go to the pool or the beach? If we've decided beach, then we have another tough decision, which beach? If we have no appointments we make the trip to Marblehead where we meet Grandpa at Devereux Beach. Both days we've gone the temperature has soared into the 90's. One such day I cringed on the beach, imagining what Luna's cardiologist would say if I bumped into her (or him, she has two). But Luna slept or rested in the stroller under the canopy. I soaked one of Sienna's t-shirt in the ocean and draped her over her legs and Grandpa and I made sure she was cool and comfortable through out the day. Occasionally I would bring her down to the water to dip her leggies in the choppy salt spray. I was even able to jump into the ocean myself, while Grandpa stayed beach side with the girls. The waves were bigger than I ever remembered and I bobbed and dove into them just as I did as a teenager. The thrill of the immense wave rolling toward me and then the rush of surviving the gigantic roll is still the same, and still one of my favorite things.

Lu's evenings consist of feeding, napping, feeding, playing, feeding and watching Sienna's every move. Then she feeds yet again, fusses for a few and finally dozes off to sleep. Oh, and I give her 1/2 dose baby aspirin. She seems to be right on with her milestones. This past week she started rolling from her back to her belly-where she gets stuck and frustrated-which is exactly what Sienna did at her age. She babbles, smiles, stares intensely and deeply with her slate-blue marble-like eyes and more recently started laughing. Hers is more a guffaw than a giggle and is irresistibly cute.

So, there you have it...the day in the life. Next week we'll start solids. Mama can't keep up with this little chunker, who is has successfully doubled her birth weight, weighing in at exactly 14 lbs. August will bring it's challenges, but we've enjoyed our summertime and with an wink of an eye, humid, anxious August will give way to crisp, serene September.

(Stormy) July is ours to enjoy!

2008-07-05T10:36:00.000-07:00

Can I tell you how good it feels to have the sedated echo behind us? It went well. Really well. The most difficult part of the entire day was that I couldn't feed Luna for several hours before the procedure. This is because she needed an empty stomach so she could tolerate the hydrochloride. Pepere came along for the ride and kept Luna company in the back seat while I drove. She fussed out for maybe five minutes, but Pepere was able to calm her by coaxing her with a water-filled bottle. An aside: Luna won't take a bottle. Sienna wouldn't either and I promised myself I would work harder at it this time around, but here I am in the same situation again. ~sigh~ But this time it turned out for the best because unbeknownst to me, Luna wasn't allowed to have even water before the procedure. The other difficult part of the day was the oral sedative given to these babies tastes awful. I realized they weren't kidding when I changed her diaper later in the day and was accosted by a foul stench. Watching Luna struggle against two nurses as they squirted the rust colored liquid down her throat was painful. But from the time they administered the sedative to the time she conked out was about 4 minutes. So really, how bad is that?

The balloon cath worked better than even the doctors predicted. (Dr. Brown actually gave me the footage of her cath. I plan on posting it soon so you can enjoy watching the tiny balloon snake it's way up Luna's tiny veins, through her shunt and into her left pulmonary artery where it stops to inflate several times). Just to recap: Luna's left pulmonary artery had significantly narrowed, most likely from a snag that occurred when her shunt was installed at 3 days old. Luna has two cardiologists (how lucky is she that she not only has one brilliant doctor, but two!), and they both agreed that she would have to have the balloon cath procedure twice before the Glenn. But guess what, she fooled them! What happened is once the blood was able to move more freely though the artery, much like a river, it grew wider as the flow increased. I was fairly confident this was the case before last Tuesday's appointment because the sats I'm getting on her are often in the low 90's (!!). Indeed this was confirmed at her appointment where her sats averaged 87. The result of all this? This stormy July is ours to enjoy. Luna will go for a MRI and her Glenn in mid-August. Sure, you might think that's just around the corner, but one thing I've learned having a special heart baby is time is finite. And never has Buddhist-inspired phrase 'live in the moment' been so true.

It seems that every day there has been a dramatic thunder storm. Sienna talks about them in great hyperbole on a regular basis. Today, as we were driving back from the Farmer's Market the sky deepened several shades of gray. I noted aloud that another storm must be coming in. Sienna, from the back seat started a dialog that went like this:

The storm is coming. A storm is coming. Mommy the storm is coming. Mommy, do you see it. Mommy the storm is coming NOW. Mommy, do you hear it? I hear the storm coming. It's coming right NOW. The storm is coming I hear it on the roof and it is raining right NOW. Mommy, the storm is HERE NOW and it is raining on my head. Oh, it's raining on Elephant's head too. Mommy, the storm is a coming! Oh it's raining SO hard on my head!

The funny part about Sienna's diatribe is it wasn't raining. And you couldn't hear the thunder. As you looked down Route 1, you could see the sky had darkened, but that was it. She continued on in hushed tones that I couldn't quite decipher, but through the bits and pieces I could hear she was consoling her pink stuffed Elephant who was clearly concerned about the coming storm. By the time I pulled into the driveway the sky had opened up to full sun again, and Sienna, Luna and Elephant were fast asleep in the back seat.

Luna in her crib weighing just about 13 lbs at 4 months and looking positively chubby! Check out those Michelin tire arms!

Thoughts on not moving, deer attacks and other important things (Luna's Tuesday appointment for her sedated echo)

2008-06-21T17:20:00.000-07:00

I feel like I am finally settling down and accepting the daily rhythm of our lives together. Just days before Luna was born, Paul and I created the best distraction going and decided to put our house on the market. In retrospect I think we both needed something huge to distract us from the seemingly steep mountain we faced with the delivery and surgery of Luna. So, early March Paul and I agreed-in complete accord-that we would put our house up for sale and look for new digs. The new home would have everything we dreamed of. The distinction of age (at least 80 years old), original fixtures including antique moulding, wide pine floors and of course a barn where Paul could toil away late at night on his latest passion-be an old VW Bus, discarded bureau or perhaps even getting back into welding as his did so passionately as a student at Wentworth College. For three months straight we packed up a newborn, a 2 year old, cleaned out the cat litter and bunny cage and hit the road in search of our dream home. After viewing property after property in the surrounding towns and enduring 50 showings at our house (yes 5-0, that's not a typo) we decided not only were we not going to get the windfall price for our home that we would have a year ago, but there is no other place that we rather live. I love my little city. There is so much I could ramble on about...the people, the beaches, the restaurants, SMA... and never mind the fact that the biggest crime to hit was the decapitation of a giant ant. I can finally say that we are totally and completely home.

Luna's sedated echo:

Now that I'm not running around crazy packing up kids and losing my mind while my 2-year-old pulls out every article of clothing from her bureau just moments before a showing, I can really take in and accept the road ahead for Luna. Her sedated echo is this coming Tuesday. Aside from the mild sedation-which again is needed because Luna doesn't care to have a probe pressed against her tiny chest for over an hour-it's really nothing more than an ultrasound. Completely non-invasive. The point of this echo cardiogram is to determine: a. how well the balloon-catheter worked from a few months ago (thinkgoodthinkgoodthinkgood) and b. how her shunt and surrounding arteries and of course heart are looking so the doctors may determine when her Glenn will be performed. The general thought is sometime this summer. The exact date as of this writing is unknown. After Tuesday we should have a clear picture on Luna's next repair.

Other than not moving, and thinking about Luna's upcoming cath, we are doing normal things like going to York Wild Animal Kingdom where Sienna was stampeded by deer. This photo pictorial shows you a step by step of how it all went down:

As you can see in this last shot the little deer's mouth is agape and clearly he doesn't look happy. What happened next is the two deer you see here, along with four others in their posse, ganged up on Sienna and decided she had better have enough food for all of them-or else. I looked over to see Sienna engulfed in fur and horns so I quickly threw my camera down to save her. The scuffle was brief, but she hasn't been the same since. And in a strange coincidence, or perhaps it was a warning from the deer posse, one lone deer casually munched on our shrubs in the backyard yesterday morning. Normally this would have been a cute spectacle, but Sienna simply looked out the window and said, "Go away Deer".

Conversations with Leo

2008-06-01T18:14:00.000-07:00

Luna has shaped up to be quite the conversationalist. Within the last few weeks she has really taken to babbling. She's only 2 1/2 months, but I swear, this baby can chat up anything! In fact she shares the same birthday as Rupert Murdoch. OK, so I'm not sure if he's a great conversationalist, but isn't he king of all media owning the Wall Street Journal (along with the Dow Jones). Perhaps big, BIG media plans are in store for Luna.

This cooing and shrieking started a few weeks ago while we were all driving. Above the hum of the road and the blare of kid-friendly radio (read: bad music) we could hear Luna in the back. Her high-pitched shrieks and gurgling noises rose above everything. Paul asked if she was crying. I looked back to see her completely engaged with the little lion hanging off her carseat handle. She was totally smitten-as we could see her reflection in the safety mirror harnessed to the back seat (which is not at all safe since I'm constantly trying to look into it from my rear view mirror while I'm driving). This conversation went on for miles. Until she finally got fed up with Leo and started crying. Not a hungry cry, nor a tired cry, but a real get-out-of-my-face-you're-annoying-me-cry. I reached back and pulled Leo off the bar and she immediately settled into a deep sleep.

But it didn't stop there. Every time I have her in her carseat, be it in the house, in the yard, on the deck with Sienna; Luna carries on with Leo like they are the dearest of friends. However, today there is tension between Leo and Luna. Once again we were all driving. This time to buy Sienna some Crocs (pale yellow with a mushroom and...a lion charm!). Luna was once again making noises from the backseat. They started low and infrequent and I thought she might be hungry again. But gradually they bubbled into full yelps. At one point she sounded like she was whining. When I turned back I noticed that Leo had turned his back on her. Apparently there was an argument. Words were exchanged. Leo wanted nothing to do with Luna and she was pleading with him. I finally pulled Leo off and dangled a monkey in its place. Mr. Monkey wasn't much for conversation and within moments Luna was fast asleep. Sadly, Leo and Luna haven't spoken to each other since.

Luna is two months old!

2008-05-16T17:17:00.000-07:00

I can't believe it's mid-May already. It seems like April flew by in a flurry of birthday parties and doctor appointments. During the last three weeks of the month we celebrated three birthdays. Ava and Maxwell turned two and Grammy turned 2+2+2+2+2...all the way up to 68! As a result Sienna thinks every day is someones birthday (actually, I guess she's right). She doesn't understand the concept that one's birthday happens only once a year. Every time we're packing up to leave the house (usually for yet another showing...in the midst of everything we're trying to sell the house...hence the radio silence on my end...who can blog when all you're doing is cleaning the house) Sienna yells excitedly, "I ready to go to Maxwell's birthday party!". Maxwell is Sienna's best friend at daycare. Apparently his construction-themed party made an impression on her. (and I have to admit, it was good. Claudette, his mommy, completed the look with yellow caution tape strewn everywhere, a huge tub filled with Chex cereal and digger trucks, all while the flat screen TV aired video of buildings being demolished). Oh, to jump in the mind of a two year old where it's a birthday party every day of the week.

Meanwhile, Luna is doing fantastic. Monday she had her two month check-up. Dr. Goodnews entered the room once again donning a mask and gloves and got right to work weighing her and listening to her heart and lungs. Luna weighs 11.2 and is 22 inches long. She's just over the 50% percentile for weight...which I must stress with these heart babies is ah-mazing! She eats all the time, so I was almost expecting it. And frankly I think I would have been a little miffed it she was anything under (it's a lot of work being the sole source of nutrition for an 11 pound human!). She's at 25% percentile for length...but hey, she was only 19 inches at birth, so I think 3 solid inches is great progress. Meanwhile, Mama dropped a quick 30 lbs. I guess there is a bright side to not being able to eat dairy. Now, if I didn't have to go and gain 50lbs I might actually fit into my old clothing. Oh well, all those Friendly's frappes during my pregnancy did the trick in fattening Luna up for birth-which was more than worth it.

Tuesday I took Luna to see her cardiologist. There she endured an echo cardiogram so her doctors could see how well the balloon cath worked. Well, guess what? The balloon cath worked it's magic! Her pulmonary artery is substantially larger-not so narrowed as it was. Her lung scan performed the morning after her balloon cath (now a month ago)was pretty much the same as it was before the procedure. Her left lung is working at about 30% and her right lung is at 70%. This alarmed me at first. But then Dr. Brown explained that most folks don't walk around with 50/50 lung 'power'. Most of us are lopsided and favor one lung over the other. So if we all went and had lung scans we most likely would read 45/55, 40/60, that type of thing. After Luna's lung scan I have to admit, I was imagining the worse. Could she live with just one lung and a single ventricle? Dark thoughts raced through my mind. But we needn't even go that far. Luna did well. The cath did what it was supposed to. And aside from her mild colic (evening time is not...quiet...lots of crying in this household) she is doing amazingly. She is such a happy baby. And peaceful.

From here we have a solid plan. In two weeks she'll go back to her NH card for a follow-up visit. Then in mid-June she goes into Boston for a sedated echo. This isn't as serious as it sounds. The sedated thing is because it's not easy to get an infant to sit still without wailing while a probe is pressed against her chest for over an hour. Then...the biggie...mid-July is when she'll go in for her Glenn operation. That will be her 2nd of three open heart surgeries. July will be a big month. Paul and I both turn 35 years old (I think that's sort of a big birthday, don't you? I remember as a kid when friend's mothers were 35 and it seemed, well, not old, but certainly very adult). And if all goes well with the sale of our home, we'll be moving. So, just a wee much on our plate. But we'll manage. And how nice will it be to be settled in our new home with the Glenn behind us.

And now for the technical stuff...

2008-04-24T06:18:00.000-07:00

A few weeks ago at one of Luna's appointments, her cardiologist drew a picture of her heart. This is not anatomically correct as she wanted to make sure I told everyone, but it does give you a pretty good idea of what Luna looks like on the inside.

And this is a normal heart...

As you can see right away Luna's heart is flipped. That is due to her dextrocardia. Then you'll also notice she only has one ventricle, rather than two, and in fact where you see four chambers in the normal heart, Luna really only has one big one. (I know, it's almost unbelievable...I often look at her pink smiling face and think in amazement of how different her heart is from mine or Paul's or Sienna's). I am slowly understanding her anatomy (or anyones for that matter...why or why didn't I pay attention in biology class??...the fact that I can't even remember who my teacher was or whether or not I even took it is not a good sign!)

As I am finally understanding all this, most of Luna's surgeries are/will be like re-routing the plumbing of her arteries. One of Luna's diagnosis is Pulmonary atresia-turns out pulmonary simply means lung and atresia means 'missing'. Translation: Luna is missing a piece of the branch that goes to the lung. That was the first correction she had in her surgery at 2 days old. Now, as it turns out, she also has pulmonary stenosis...stenosis means narrowing. Translation: the branch leading to her left lung is narrowed. For this we'll all head back into Children's this coming Sunday so Luna may undergo a balloon catheter. This is a procedure that's been around for over 20 years. Luna will be admitted Sunday so she may be sedated and set-up on an IV of fluids for the night. Then on Monday morning the doctor will insert the cath into her groin, specifically into the main artery called femoral artery. The cath will have a tiny balloon on the tip. Once the cath is snaked through her body and up into her left pulmonary artery the doctor will inflate the balloon in attempt to enlarge the 'branch'. When I was first explained of this my stomach sank, but it turns out our arteries, and particularly those of babies', are really resilient. Realistically Luna may have to undergo this procedure a few times before the artery finally stays open on it's own, allowing for blood and oxygen to once again flow freely into her left lung.

So, please be thinking of lil' Luna this coming Monday. Hopefully this balloon is going to work it's magic and open up that pesky artery!

Here's Luna just yesterday...she's a big 5 weeks old now!

First smile!

2008-04-15T18:18:00.000-07:00

How funny is this. For the past few weeks, Paul and I have been standing on our heads, cooing and making silly faces, and Luna gives us nothing. Paul even dusted off his famous baby voice for Luna and still, all we get is a wide-eyed stare. Actually, we often get a frown or a pout, with an expression that says, "what are you guys trying to do and whatever it is, stop it!". Yesterday, my friend Kristen stopped by for a visit and as soon as she scooped up our little bundle, Luna was hooked. Luna couldn't take her eyes off "Auntie Kristen" the entire time. As soon as Kristen started talking in her baby voice (we all have one) Luna was cooing, gurgling and smiling. At one point as shown in this photo, she looked to be almost giggling! Once again, Kristen lives up to her 'baby whisperer' reputation. To be fair to the rest of us, she has a degree in childhood development. Hmmm...so it takes a degree to get a baby to smile these days. That must be it!

Just because this is so hilarious...

2008-04-06T04:25:00.000-07:00

...this was the scene at our house yesterday evening. This was not posed. Well, OK, Luna didn't exactly walk over and plop into her little infant seat-but the bunny and cat did arrive to this pose on their own.
For those of you who know the Stoucy, our cat, you realize how unlikely this sight is. Stoucy is, in a word, psycho. The only people who like her are Paul and my Dad-go figure. (I sense there is a joke there, but I'll let it be).

The rest of us can't stand her. The last time we weighed her she was close to 30lb. She weighs more than my 2 year old. She also thinks she's a German Shepard. As my friend Janelle can attest to, she once chased her around the house. It was truly frightening. I hadn't the time to warn Janelle one visit before she went over to pet and coo with the 'nice kitty'. Stoucy pounced. But she didn't stop-she chased Janelle up and down the hallway and around the living room-Janelle had to jump on the couch to escape-and Stoucy, who is too fat and too lazy-gave up and walked away. Even Sienna yells at her-something I'm to blame for, and feel a tinge of guilt-every time I hear Sienna scold, "Stoucy, No!". This command is hollered often when Stoucy is sitting cleaning her paws-completely minding her own business.

The poor bunny is another story. One freezing night, Paul convinced me to join him in a ride to some God-forsaken place called Mechanic Falls, Maine so we could check out a lop breeder. He thought Sienna would like a bunny for Christmas. Turns out, Sienna is like me, bunnies bore her. A few days after we brought the tiny furball home the novelty had worn off and no one could even be bothered with naming the poor thing, so we all call her 'Bunn'.

So, I guess it's nice to see that Stoucy and Bunn have bonded. At least we can feel good knowing that if no one else seems to like them, they have each other.

"Luna is our Little Star"

2008-04-04T08:40:00.000-07:00

That's what her cardiologist told us while at our appointment on Monday. Paul, Luna and I trekked into Boston for her routine follow-up. It was different-mostly because I'm so used to being on the prenatal side of things-I wasn't prepared for all the children!
The appointment began with a weigh-in. Luna impressed us all with a weight of 7lb 14 1/2oz. Less than a week earlier she weighed 7lb 5oz. This is with me exclusively breast feeding or 'EBF' as we say in cyberspace. Both Luna's cardiologist and pediatrician agreed that we needn't implement with formula bottles due to her consistent weight gain. I was thrilled but not surprised because if anyone remembers Sienna when she was an infant she was a lil' porker! It was not until I stopped EBF that she started to level off with her weight. For the first 7 months or so she was always in the 95th percentile. Not until we introduced table foods and then she endured a few good rounds of stomach flu did she drop to the 50th percentile for weight-where she's remained ever since.
Luna's appointment continued on with an EKG-and nope, the leads weren't placed on her body opposite of what they should be. I asked... The nurse replied it was a good question but because Luna has only a single ventricle there is no need to reverse the leads. Either way, Luna's read was perfect. After the nurse listened to her heart and lungs-again all clear there-we all headed downstairs for an XRay. Paul and I braced ourselves for the worst as we entered the darkened, lead-lined room. But Luna's amazed us again. When the technician pulled out the infant box and placed our baby inside, Little Luna raised her arms above her head just as she should have-without us having to force them against her will. She's laying the very same way now as I look down at her sleeping in her bassinet. (There's something about infant arms-with their lack of intent and floppy motions that remind me of Grover arms-something that I find so cute.).
After the XRay we met with Dr. Brown, Luna's cardiologist. He again marveled at her recovery and health, at one point saying, "I bet people who don't know her have no idea of her condition". Yep, that is the truth. She's an adorable, good natured, happy baby girl! We discussed her next surgery, which Dr. Brown said would be in about 4 months. This took me by surprise, but it's really a good thing. Since she's gaining on a good curve she most likely will outgrow her current shunt sooner rather than later-hence her next surgery will most likely happen closer to 4 months rather than the usual 6.
So, until then we'll have monthly cardiologist (card) visits up here in NH and we continue to monitor her sats. Once they start to consistently drop from the 80's into the 70's we'll know she's ready for the next step-the Glenn operation. Until then we look forward to enjoying the spring and summer!

Luna sails through first visit with the pediatrician.

2008-03-28T10:37:00.000-07:00

Tuesday morning I packed up Luna and took her out for her very first visit to the pediatrician. It was my first time with this practice-who specialize in chronic illness (though I loathe that expression so I'll just refer to their clientele as 'special').

The doctor-who for now I'll call Dr. Goodnews-arrived in the examining room suited-up in a Hazmat outfit and bifocals that made his eyeballs appear the size of baseballs. OK, so I exaggerate on the Hazmat outfit, but he was wearing a sizable mask and gloves and those crazy coke bottle glasses. At least I know these docs are taking our 'special' kids seriously.

Dr. Goodnews had me undress Luna to her diaper and place her on the scale. She weighed in at 7.5lb. Before I could pull Luna off the tiny scale Dr. Goodnews burst out with tremendous excitement, "WOW, look at her! She looks fantastic!" Well, I'm biased, but I think she does too. He was taken aback by her pink skin (heart babies often look blue-also called cyanosis, due to poor blood circulation and low oxygen saturations). To be fair, Luna can occasionally look a bit blue-especially when she's screaming herself into oblivion-a blue ring forms around her mouth that one otherwise might not notice if you didn't know what to look for.

Dr. Goodnews continued on with his exam and listened to her heart and lungs and checked her eyes and ears-all checked out with flying colors. Then he lifted her just under the rib cage on both the right and left side-causing her to form a pretzel each time-which apparently was a good thing and showed she had good muscle tone.

The only downer was she conveniently pooped in the office so they were able to check her stool-and once again trace amounts of blood were found. Dr. Goodnews wasn't the least bit concerned and simply told me to eliminate all dairy and specifically to read all labels for casein and whey. Um, easier said than done...who knew dairy existed in EVERYTHING. More on Mama's battle with no dairy later-but for now let's just say if anyone knows where I can purchase a 'dairy-patch' please do tell. Soy icecream just doesn't compare to a Friendly's mint chocolate chip frappe-which I'll admit to sometimes eating 2 a day when pregnant with both girls (and I wonder why I gain 50lbs each pregnancy).

Our next appointment is Monday in Boston-a big follow-up. Will report back then. For now I must get back to Mister Rogers...he's touring Colonial Williamsburg where there's a parade and the band is playing Yankee Doodle Dandy. Sienna wants to see "more-some 'lins" (translates to 'More violins') and then have a parade of our own. Now, where did I put that slide whistle?!

Sienna sporting her own faux cyanosis brought on by copious amounts of blueberry jelly.

Now what?

2008-03-25T05:05:00.000-07:00

I get that question a lot. "Now what will happen to Luna?" Well, from here she has two more surgeries: one between 6-12 months of life, and one between ages 2 and 3. The second surgery, which will for Luna be either late fall or winter, is called the Glen. During the Glen the surgeons will replace the shunt implanted during her first surgery with a bigger shunt, hopefully one that will grow with her through out life. Because babies are so tiny at birth-the first operation is considered a temporary fix. Almost all babies with similar heart conditions, Luna included, have a temporary shunt implaced-and the size of the shunt is almost always-and again in Luna's case as well, 3.5 mm. Yep, that tiny. I haven't taken a look at a ruler, but Paul assures me it's teeny.

Another common question I hear is: "will they move Luna's heart so it's in the right spot?" Egad-No! Medical science is amazing, but I would imagine that would be near impossible-but not only that, it's unnecessary. Dextrocardia, the name for Luna's condition that refers to the heart being a mirror image situated on the right side, is a benign condition. Unless it's paired with another condition called Dextrocardia Situs Inversus Totalis, where all the organs are flipped, dextrocardia in it's own right comes with no health risks. Sometimes, if dextro is undiagnosed, which is completely possible- and I bet there are a lot more of ya walking around with your heart on the right and you don't even know it!-it can be life threatening if one with the condition goes in for surgery for these reasons:
ECG leads must be placed in reversed positions on a person with Dextrocardia. In addition, when defibrillating someone with dextrocardia, the pads should be placed in reverse positions. That is, instead of upper right and lower left, pads should be placed upper left and lower right.

For now, caring for Luna is easy-she's exactly like any other newborn...she mostly sleeps, eats and poops! The only maintenance we have is twice a day, once at 8am and once at 8pm, Paul and I give her three meds. In the morning she gets half a baby aspirin-which for now is the only med we know she'll be on for life. In addition she takes Zantac-yep, the heartburn medicine. This is because after surgery, as I can attest to as well, the digestive tract slows considerably giving you terrible gas and heart burn. The final med is Lasix-this is a diuretic which is meant to pull the excess water from her lungs and blood vessels. The idea is to draw-out the excess weight off the blood cells so when it funnels through her heart, she doesn't have to work as much. Heart babies and adults literally burn lots of calories just sleeping and eating-how lucky are they??-with the help of Lasix they don't have to work quite as hard to pump blood.

So, that's a short lesson in the daily care for the Luna Bean. Easy, huh? Now we're off for our first appointment with the pediatrician...will report later with her check-up!

The visiting nurse getting Luna's weight which when this was taken last week was at 7.2lb

This photo shows the blood saturation and heart rate monitor. Twice a day we apply a sensor to her tiny foot so we can get a read on her 'sats'. Most of us have blood saturations in the high 90's. Little Luna is at the mid-80's-which is exactly where she should be post surgery. Not until the final surgery will we see her sats in the 90's.

Luna's night-time meds.

Sienna changing Froggie's and Elephant's diapers.

Sienna loves her sister. Today she asked if she could stay home with Mommy and baby Luna. (As soon as Mommy can lift you!)

We're Home!

2008-03-20T09:05:00.000-07:00

Last night at exactly 6pm Paul, Luna and I arrived home. Sienna and Memere greeted us at the door. Sienna was nearly jumping off the walls with the excitement that her baby sister was finally home.

As predicted, yesterday was a long process. We were supposed to be discharged at noon but little Luna-apparently has a flair for the dramatic like her sister-decided she would keep us on our toes with a tiny scare. The previous night the nurse changed her diaper (ahhh...to have one of those amazing nurses come home with me!) and exclaimed that her poop looked 'funny'. The word funny strung along with poop in a sentence usually doesn't mean anything humorous at all, but rather something very 'unfunny' and potentially even downright nefarious. In Luna's case the green in her poop meant blood. Who knew green poop somehow translated as red blood. So, starting at about 2am Wednesday morning every diaper was tested. Two diapers came back with trace amounts of blood. This can mean a whole litany of conditions ranging from blood ingested during breast feeding to a much graver condition where the body (I hope I get this right) over circulates and the baby develops something called NEC-an acronym for something I won't even pretend to understand on 4 hours sleep.

Along with testing Luna's diapers the nurses checked her little bum for a fissure (none there) and several doctors and nurses gave her belly exams. In the end the feeling was perhaps she has a milk allergy since the two suspect diapers were found after Luna ingested a breast milk bottle fortified with formula (which is made from cows milk). Little Luna apparently wants to be just like her sister. Since Sienna is lactose intolerant Luna decided she would be too.

In the end it was an easy fix-moving forward, the bottles we give with formula in order to fatten-up Little Luna-must be made with soy formula.

Since Luna was showing absolutely no signs of discomfort the doctors finally discharged us around 3pm.

Last night was our first night as a family of four and it felt wonderful to be reunited at last...even despite the fact that both our 'babies' had Paul and me up all night!

Sienna in the playroom-just two doors down from Luna's room at Children's. As you can see this is vacation as far as Sienna is concerned!

What a Difference a Day Makes.

2008-03-16T19:09:00.001-07:00

The lyrics to the old song played in my head all day as I marveled at Luna's recovery. Not yet even two full days out of open heart surgery and here she is drinking from a bottle and cooing with the best of 'em. The doctors stopped the breathing machine less than 24 hours out, but left the tubes in as a precaution because the standard quo for these babies is they need help breathing-typically for a good many days afterward.

And last night Luna was 'stepped down'-AKA booted from the cardiac ICU. I actually wasn't nervous leaving her for the night so we could get back to Miss Sienna.

Last night Paul and I got a blissful 8 hours of sleep in our own bed (when does that ever happen with a 5 day old?!) and this morning we packed the car and headed back into Boston with Sienna, Memere, Pepere, and Uncle Bill in tow. We arrived to see Luna in her new crib. Just as we entered the room the doctor began the procedure to remove her heart drain (during surgery a drain bulb is placed right underneath the heart to drain excess blood afterwards). A bit of Morphine was administered and the doctor with a nurses assistance pulled out the bulb. I'll admit, I couldn't watch. Luna wailed in pain-and the doctors will admit, it's not pleasant-but it's a 30 second procedure and even better...it is the LAST procedure for a while!! Right now my only purpose in life is to get Little Luna to eat. Once she proves she can eat successfully she's outta the hospital...it's that easy! (though I better knock wood...) Today she took an once here and there of milk, but because she was so sleepy they had to tube feed her. And I'm not going to blame her just yet...if I had just undergone open heart surgery I would be sleepy too!

Big Sister rockin' the phones at the Ho Jo's, our home for tonight. If you're wondering the conversation went like this:

Sienna: Hi Jasmine. Are you at Daycare? Okay! Bye-bye!