Charlotte's Journey Home

Just a Regular Kid, Sort Of


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On This Day….

How often can you say that you know exactly what you were doing on this day twelve years ago?  I can say that every May 16 I know exactly where I was and what I was doing on May 16, 2005.  You see, today is Charlotte’s heartaversary, the anniversary of her first open-heart surgery.

I remember handing the tiniest bundle, all of 5 lbs., to the tallest anesthesiologist you can imagine and hearing him say, “We’ll take good care of her.” I remember thinking how kind it was of him to carry baby Charlotte in his arms, rather than wheeling her away from us. Somehow it affirmed for me that the doctors would see our baby as a person, not just a heart to fix. I remember turning from him and thinking that the hallway leading out of the surgical suite and to the waiting room was the longest, whitest hall I’d ever seen. And, I remember that before I could complete that thought Philippe let out a sob and his knees buckled. I remember catching my husband so he didn’t crumble to the floor. I remember.

I remember Sharon, the attendant in the waiting room, and her concern for us. And guess what, Sharon remembers us. I’m sure that when I walk into Lurie Children’s tomorrow, where she now mans the security desk, she’ll ask how Charlotte is. I remember Julie, the APN, coming to update us. And I remember Dr. Gus Mavroudis walking toward us, pulling off his surgical cap, smiling and telling us that Baby Charlotte was on her way to recovery. I remember.

I remember walking into Charlotte’s PICU room and being overwhelmed by the site of our tiny baby, barely visible on the warming tray, surrounded by machines and covered in bandages and wires, swollen like a balloon from the fluids, eyes closed.I remember Nancy Smith, Charlotte’s lead nurse, telling us what each machine was for, each medicine. And I remember needing the nurse in charge of each of the next few shifts to repeat all that information because I couldn’t remember. I remember rubbing the crown of Charlotte’s head–it’s all we could reach–and wondering if she’d ever come home with us.

I remember all this and more. But I don’t remember the emotions. I channeled my energy into telling Charlotte’s story, never really admitting that her story was my story and Phil’s story, too. I poured my world onto the page and hid behind my camera. I kept myself arm’s length away, maybe trying to protect my heart. I’m working on that now, hoping to put those emotions on the page and turn them, mingled with this blog, into a book that will help other parents.  Why? Because Francie Paul invited me to the most amazing event, the Tillman Foundation’s TendHER Heart Luncheon, honoring mothers of children with complex medical conditions, mothers who got to bring their babies home, and mothers who didn’t. I’ve been grateful to Francie for many things over the years, but for this gift above all. Not only did I find two “heart mamas” to sit with during lunch, but I got to hear the inspirational words of Stefanie Boyce, who not only summed up what each of us had gone through in our unique ways, but who did so lyrically and with grace. If you read nothing else this week, read her essay “I see you, mama: A word for mother’s navigating a different dream.”  Philippe and I have been navigating a different dream. And we’re so grateful that it is interwoven in so many ways with a “regular dream.” Stefanie

In many ways, maybe most ways, it is Charlotte’s story. And it has a happy beginning (she’s only twelve, ya’lll, she IS just beginning). Tomorrow that 21″ long, 5 lb. baby will run in her first track meet (and she’s now at least 5’6″). She’s good. She’s better than good. She rocks.  But, at her request, this blog will only tell her story now with her permission and her review. Otherwise, when I post it will be my story, my journey to being a regular mom.  I welcome your input at any time.

Want to know how May 16, 2005 went down? Click here.


2 Comments

Time for a Major Tune Up

I’ll cut to the punch: Charlotte will need open heart surgery to replace her conduit.

I can hear all of you gasping as you read that.  We, however, did not gasp. I think we would have been more surprised to hear that she needed only angioplasty based two things: (1) Her last repair was just about 8 years ago and back then the anesthesiologist said he thought we’d have 8-10 years on the conduit they put in; and (2) We both remembered Dr. Gossett telling us that he didn’t think he could balloon a second time. So, this time it was a matter of where the blood flow restrictions are.

ILENE-0258-3

ILENE-0255 photos by Lisa Gottschalk

The MRI showed restrictions at the proximal point and through the right pulmonary artery (RPA). Given that the current conduit is only 16mm, she has definitely outgrown it. While they replace the conduit, the surgeons may also do some repairs to the RPA, which they did also in 2007. A larger conduit may allow easier interventions in the case of complications down the road. Moreover, she’ll feel better.

We’re hoping to schedule the surgery for the week of February 9 so that part of the recovery period can happen during our February school break (woo hoo).  We anticipate 5 to 7 days in hospital and another 1 to 2 weeks at home, followed by restricted activity. Followed by some sort of lovely vacation in April.

Before then we’ll have an exercise test (tomorrow) as a baseline. We’ll follow up with a post-surgical exercise test. There will be other pre-op tests as well, I’m sure. Check back here regularly–the blog is about to get busy again.

It’s been a month since Charlotte has been on a horse, and while she’s not riding right now because she’d like to do the repair first, she’s eager to get back in the saddle. Literally.