Thursday, April 26, 2012

Sylvie's Update 4/25

We met with Sylvie's cardiologist on Wednesday. She had an echo as expected. Her blue and red blood are still swirling around in her heart in a scary fashion. Her oxygen saturation levels are also beginning to drop. The tech got a reading in the 92-95% range.

However, she is gaining weight and stretching out well. And thankfully, she hasn't tired while eating or had a tet spell. Because of this, our cardiologist wants to wait until June 28th for surgery. This was a bit of a surprise to Shawn and me. We were expecting to set a surgery date in May. We certainly aren't eager for surgery--of course we'd love to avoid it all together--but waiting an additional four weeks does seem like an eternity to us. I guess we're still meant to build up some more spiritual endurance.

To be quite honest, we've been caught in some doldrums since Wednesday morning. It's never fun to see what is going on in her heart. And I find myself concerned about the possibility of witnessing a tet spell more than ever. Worries that they won't be able to save her pulmonary valve have resurfaced (if they can't, it means a second heart surgery for her in 15-20 years). I'm still greedy for any prayers you might offer up on both Sylvie's and our behalf.

And yet, I know the importance of counting my blessings--a stiff wind, if you will, to blow us out of a slump.

We have decided on a surgeon, Dr. Mark Turrentine at Riley Hospital for Children. He's excellent technically and mindful of his patients. Not only has be rebuilt hearts for children born with only half of what they need, but also while performing TOF surgeries on little girls, he's careful where he makes the incision so they can wear v-necks some day and not have to keep answering questions about a scar. Not that we're really into Sylvie ever wearing v-necks or bikini's, but the sentiment touches this mother's heart.

And I'm thankful Riley is so close to us. I'm thankful Turrentine's office is already on top of the 'pre-certification' paperwork that must be sent to our insurance carrier (a carrier that has already denied several of our claims--you can pray about that too). I'm thankful for the kindness and gentleness of everyone we've ever talked to and dealt with at Riley. Not only are they unbelievably competent, but also unbelievably kind and gentle. Both are equally necessary for parents of children facing serious surgery.

And we're so thankful for our daughters--all the giggles and smiles; Emeline's quick and active mind, Sylvie's adorable coos and snuggles (everyone was falling in love with at the office yesterday--including our cardiologist).

And then there were butterflies...
but you'll have to wait for that story.

(Here it is!)

1 comment:

  1. Praying dear friend for your sweet sylvie and for all of you, as you face the waiting, and the hurdles beyond. May you feel Him carrying you over the hurdles with his strength and stamina. Love you much! Lauren & Steve

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