But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Sunday, September 23, 2012

Sunday night Sept 23rd

Hooray, Grace passed 3 lbs! She's 3 lb 1 oz. THANK YOU FOR PRAYING!

Double hooray: David is up over 4 lbs (just barely)!

Triple Hooray: Will is just 0.3 oz shy of 5 lbs!

Quadruple Hooray: Marcie is only an ounce behind David at 3 lb 15 ounces, but she actually looks "fatter" as she is shorter than he is. :) Both of them need to keep gaining, of course.

And a hooray around here tonight is that Seth is needing less oxygen than he did this afternoon, which of course you all didn't know about. He was up to 88% for no discernible reason, but thank God when I called he was back down to 58%. However, that's only 2% below the "high oxygen requirement" of 60% or greater, and the doctor and nurse practitioner both said that his case is perplexing; why is he not getting any better? They had to go back up on his machine settings (mean airway pressure, for one), although they did wean one other setting by one point. His current settings are "significant," though. For that reason they are repeating the heart sonogram, doing a bunch of lab work, sending out some blood for genetic testing to rule out a mutation affecting his body's production of surfactant (critical lung fluid for oxygen and carbon dioxide gas exchange), and scheduling a consultation with a pediatric pulmonologist. We sure hope and pray the genetic mutation isn't the issue as it is fatal (protein B).

We want to hold and cuddle our baby! It's SO hard to see him in that isolette, addicted to the drugs he has to be on so that he can tolerate the oscillator that's keeping him alive. He's almost always unresponsive when we are there due to the drugs. We're glad he's not in pain or distress, though. Thank God for that.

He's got water on his lungs and pitting edema (swelling). WE DON'T KNOW WHAT'S WRONG (arg!!), but I cling to the truth that our Father knows exactly what's happening and is in complete, loving control, no matter how I might be tempted to feel. It doesn't matter a whit whether I know what's wrong or not. Seth is God's boy; we wouldn't have his darling blond body if not for the Lord. I deeply, passionately hope and pray his little blond head is bobbing around with his brothers' and sisters' one day soon. Thank you for joining us in the battle.

In His Hands, together with all the babies, Gavin and Isaac,

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

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