Monday, December 29, 2008

A Quiet New Year

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.

Monday, December 8, 2008

A Heart Mama's Guide to Holiday Giving.

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.