Here's an update about Elie, the baby we blogged about back in March, who was diagnosed with VCFS after she was born. This post is written by her mom, our friend Holly Smith:
What a difference a day makes—or, in this case, a couple of months.
After grappling with Elie’s VCFS diagnosis, we were brought back down to earth: In June, she was diagnosed with pulmonary hypertension (PH), a chronic, potentially fatal condition where the pressure in the vessels leading to and from the lungs is too high. Although they’re making tremendous strides in treating PH, the reality is that most people with PH die of PH.
So, in my darker moments (of which there are many), I'm terrified that Elie will die. Horrified. Paralyzed. Literally unable to breathe from the stress of it.
BUT.
In other moments, I stand back and remember that she has as good a chance of beating PH as anyone else. The advances in treatment are coming fast and furious.
Even better, we learned at Elie’s angioplasty last week that her PH seems to be confined to just her left lung (something that’s practically unheard of).
If this continues to be the case, it could truly be a game-changer. Even if Elie needs to have her left lung removed someday, she could conceivably live a full, productive life with just one lung.
Honestly, when we got that news, it felt like the governor calling at one minute ‘til midnight. That’s how huge it was.
I even cajoled our PH doc into dropping the clinical-detachment crap and giving us a “Rah, rah!” before we checked out of the ICU after the angioplasty. It was a small victory, but we’ll take anything we can get for our “win” column.
Anyway, I have to believe that she'll make it. I really, really do. Because I can barely function during those times when I ponder her death; it truly makes the floor drop out from under me.
I'm trying so hard to live in the moment, as they say, but it's tough. I was holding Elie the other day, listening to the radio, when "Happy Together" came on. One moment, I was singing, "I can't see me loving nobody but you for all my life" to her, and the next, I was sobbing.
It's an overwhelming dance to do.
However things go, I’ll continue posting updates to www.carepages.com (search under “EliesPage”); I’m praying ferociously that it’ll be all good news from now on.
3 comments:
You are so brave! Love you both buckets. JP
Holly is my sister, Elie my niece. And therefore no one, except her parents, of course, love that little redhead more than I do. She is truly a miracle and will no doubt outlive us all. Her folks are pillars of strength, her doctors wizards, and her siblings and extended family are a network of love and support that can see her through anything. She is also a testament to the amazing strides being made in medical treatment and research. Elie will not only "survive," she will thrive. And I'm counting on her sharing my own genetic abnormality:being born without the math gene. I need SOMEBODY to commisserate with...
As someone who has tread a similar road, I can tell you there is something to be said for faith; fierce, uncompromising faith. We had many dark days, and crises, but my son achieved his twenty-third birthday this summer. Miracles do abound. Hang in there.
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