An Event That Changed My Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yesterday was a special day. The girls and I went up to Maine to celebrate the bridal shower of the Architect's cousin (he has close to 50 first 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

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!

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...

...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?