Darling's open-heart surgery was in the wee hours of a beautiful summer morning (read Part I and Part II leading up to her surgery). My parents had flown in to watch Little Bear and provide emotional support. We kissed them good-bye and waved farewell to the heart medications that had grown roots in our kitchen. After this nail-biting procedure we'd be free of them forever more. It felt good. It felt scary. It felt a bit like I wanted to revert back to my childhood and rely and my mom and dad to take care of it. But it felt good nonetheless.

Daddy and I held Darling in the pre-op room, passing her back and forth and smothering her with kisses. We didn't say anything to each other but the weight of our silence spoke volumes about what we were both going through. Angst about the procedure. The one percent mortality rate associated with this operation. Her recovery. The possibility that she may require additional medical attention down the road. The scenarios could've piled up in my head if it weren't for a young teenage girl who was wheeled into pre-op for spinal surgery. Her parents were very upbeat. They talked about everything but her surgery. They cracked jokes and winked at the nurses. Despite their best efforts she looked terrified. When her surgeon came in to greet her she let two alligator tears slide down her cheeks. "Am I going to wake up after this?" They all laughed like it was the silliest question they'd ever heard, dismissing the notion that anything could go wrong. I felt her fear. I asked myself the same question about Darling. But this little girl's courage helped me through those last silent minutes before they took Darling into the operating room. If she could face spinal surgery without breaking down, I could certainly hand over my sleeping beauty with a brave face.

Two cups of mocha and forty-five minutes later, Dr. Howard Rosenfeld, Darling's pediatric cardiologist, and Dr. Frank Hanley, world-renound pediatric cardiothoracic surgeon, came into the hospital cafeteria to confirm that the surgery went smoothly and all three holes in her heart had been stitched up. Hooray! Three cheers for Children's Hospital & Research Center Oakland! High-fives to our fabulous medical team! It was such a relief. The wait was over and the outcome was everything we'd hoped for. No more broken heart. No more gasping breaths. And to think, had Darling been born in the early 1900s, her life expectancy would have been nine-years-old.

Her post-op recovery was almost as speedy as her surgery (see photos). Within hours the nurses removed her breathing tubes. Over night they removed her feeding tube. They even got her cradle cap under control before they released her into our care two days later. And that brave teenage girl that helped me through the dark hour before Darling's surgery? She was in the bed next to us, a full two inches taller now that she had a straight spine! Modern medicine is such a marvel.

When we found out about Darling's congenital heart failure it felt like we couldn't catch a break (read Part I). As the new parents of a special needs child, the unexpected disappointments felt like repeat punches to the gut. But anyone who's a parent knows that when it comes to your children, you catch your breath and get back up to move forward with their best interests at heart (no pun intended).
 
That's why we decided at our second weekly cardio check-up to schedule Darling's open-heart surgery sooner rather than later. Dr. Rosenfeld and his medical colleagues seemed impressed with our determination to get Darling into the operating room when most parents opt to wait it out and see how their children's heart conditions develop over the first year. For us, postponing the inevitable was pointless. Darling was working so hard to feed that she was actually burning more calories than she was consuming. We had to fortify my milk with formula and put her on three different heart strengthening medications. But the part that made heart surgery a no-brainer for us was watching her breath - a simple exercise we all take for granted. Every minute she took over 80 rapid breaths as deep as a diver ready to plunge to the bottom of a pool.  
 
And so we set a date to fix all three holes in her heart and steady her breathing down to normal. It may sound strange that infant open-heart surgery could excite two parents, but we saw the light at the end of the tunnel, and now we had something we could actually fix. She may always have Down syndrome but she wouldn't have to live with a "broken" heart. We prepared ourselves for her surgery by ignoring the one percent mortality rate associated with this invasive procedure and focusing on the desired outcome - a healthy heart and a much happier baby.

As luck would have it, we also had the incredible advantage of being able to choose from the best pediatric cardiothoracic surgeons at Lucile Packard Children's Hospital at Stanford. We selected not only the best at Stanford University, but a world-renound pediatric cardiothoracic surgeon - Dr. Frank Hanley, member of the Cardiothoracic Surgery Program at Children’s Hospital & Research Center Oakland. The Cardiothoracic Surgery Team is part of the Northern California regional congenital heart program affiliated with Stanford University.

Things were finally looking up. We headed into her operation cautiously optomistic. Afterall, we're talking about open-heart surgery.
 
(To be continued in Part III...)

When Darling was diagnosed with Down syndrome in the delivery room, the nurses, doctors and geneticists told us to take comfort in the fact that she didn't show any signs or symptoms of heart defects. According to the book Babies with Down Syndrome: A New Parents Guide (The Special-Needs Collection), "40 to 45 percent of babies with Down syndrome are born with heart defects." That said, we felt some relief when the nurses, three pediatricians and a clinical geneticist all gave her heart the thumbs up, and we didn't think much of it when her pediatrician recommended an electrocardiogram "just to be safe." Since it was only a precautionary measure, I told my husband not to take time off from work, I could handle this routine evaluation alone.
 
When I entered the Children's Hospital & Research Center Oakland with Darling, I immediately noticed the other families and their children. Some were cancer patients, others were paraplegic, and several looked perfectly healthy. It was a mixed bag, and I went back and forth between being thankful that Darling only had Down syndrome and feeling upset that she wasn't one of the healthy kids.
 
When Dr. Howard Rosenfeld, Darling's pediatric cardiologist (listed in Best Doctors in America, 2007), took a long, hard listen to her heart and recommended an echocardiogram, my mother's intuition kicked-in. Routine cardiology appointments consist of physical examinations, electrocardiograms and stethoscopes - but echocardiograms? And when the ultrasound technician didn't utter a single word during the sonogram, I became fearful of what they'd found. But it was when Dr. Rosenfeld walked in with the results and a concerned look on his face that my own heart felt sick. "Well, we found three holes in her heart," he informed me. Three holes? How could a gaggle of nurses, pediatricians and geneticists have missed a heart murmur caused by not one, not two, but three holes?

At that moment I felt incredibly helpless and alone, and I wished I'd had my husband accompany me to this appointment, "just in case." Because, after all, there's nothing routine about being new parents to a child with Down syndrome.
 
(To be continued in Part II...)    

I didn't know Jett Travolta. I don't even pretend to run in distant circles with his famous family. Regardless, the news of his sudden passing really affected me. As the mother of a special needs' child, I've often wondered what it would be like without my little Darling. Would life be easier? Would life be happier? Would life map better to my master plan of raising the next "Leave it to Beaver" family? I'll probably never meet John Travolta, but I know with certainty that he'd say life without Jett is harder, darker and simply unimaginable. He'd tell all of us, the parents of special needs or mainstream children, that we're lucky. He'd tell us to stop asking impossible questions and start celebrating our children every day until it's our last. He'd tell us to cherish life regardless of size, color, shape, gender or medical diagnosis. Love what you're given. This is the lesson I take from Jett Travolta's heartbreaking passing.

If you would like to share your own perspective on what we can learn from this tragedy, or the ways in which you celebrate parenthood, please leave your comments for others to read and benefit from.

I had the best intentions when I started this blog: post a new entry weekly to share my journey as the parent of a child with special needs. That was until I got pregnant with baby #3 and the morning sickness reared its ugly head = intentions out the window.

That said, the first trimester is behind me - phew - and I'm ready and able to re-commit to weekly chronicles as my first New Year's resolution.

My second New Year's resolution: ending world hunger.

My third New Year's resolution: peace on earth.

But first, time to eat my sixth meal of the day and catch a quick cat nap before putting on my bright pink cape and braving 2009. Because being Super Mom is exhausting!

Darling arrived on March 27, 2008, but her homecoming was an unexpected turn of events for our family. Two minutes out of the womb our excitement was interrupted by a nonchalant nurse who casually informed us that our second child likely had Down syndrome.

“Then let’s just put her back in and let her bake a while longer” – that’s what I was thinking. That’s what a 30-year-old woman who knows nothing about Downs thinks when she’s told the child she carried for nine months (261 long, nauseating days) is less than perfect by society’s standards. 

To say this was completely unexpected wouldn’t be entirely true. We did have an alphafetoprotein (AFP), or triple screen, test to detect neural tube defects that red-flagged us as “high risk” for Downs. But the likelihood was less than 1%, which means there was a 99% chance she’d be “normal.” Those are pretty good odds – odds you’d play in Las Vegas. And since the AFP test is considered by some to be highly inaccurate (there's debate it has an 80% false positive record) we didn’t think we had anything to worry about. So we didn’t – not until Nurse Debbie Downer gave us the news that changed the course of our lives forever.

And so it begins. Our new life as the parents of a special needs child… 

Welcome to the LeapFrog Community. Nice to meet you. I'm a LeapFrog Mom and the author of the blog "Surviving the Ups and Downs," which will chronicle my journey as the parent of a child with Down syndrome. 

A few things about me to help us get acquainted:

My favorite color is pink.

My favorite shoe is a high-heeled Jimmy Choo, in case you're checking your Christmas list twice. On the more practical days I sport Uggs - yes, they're ugly but they're awesome.

My favorite activity is sleep, a luxury I cannot afford with two small children.

My favorite guilty pleasure is catching a few extra winks while my husband juggles Daddy duties in the early morning hours.

I love my girls, "Little Bear" and "Darling."

I love my husband, "Daddy."

I love my chocolate lab, "Guinness."

In that order.

But don't tell my husband.  Or my dog, for that matter.

When I'm not with my favorite people you can find me in the LeapFrog Community, sharing stories or ideas about learning with LeapFrog toys.

Little Bear's favorite LeapFrog toy is the Tag Reading System, and I hear this story line repeated over and over in my sleep: "Good morning my wigglers and gigglers!" Tag Moms and Dads, you know what I'm talking about (hint: there's a concealed headphone jack on the side of the Tag Reader).

Darling's favorite LeapFrog product is the Learn & Groove Musical Table - brilliant concept and totally engaging.

So now you know a little about me, and you'll continue to get to know me through my blog.

So what about you? What's your parenting story? Do tell...