Crossing State Lines

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

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

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

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

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?

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

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)

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)

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)

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)

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)

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)

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

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

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?”