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

Tuesday, September 25, 2012

Nitric oxide for Seth; updates; pictures

Suspecting some pulmonary hypertension (which, as I understand it, would explain the crazy variation in his blood oxygen and his oxygen needs), the doctor started Seth on inhaled nitric oxide to help dilate his little blood vessels in his lungs. Their constriction is what causes the hypertension. He is down in the 40%s on his oxygen needs and has been weaned two settings on his machine, praise God! We just pray it continues this way, if the Lord is willing to heal our precious boy.

We don't have any test results back yet. One test was for an infection that would be treatable/curable, the other was for an incurable, fatal genetic mutation. We will let you know when we know (by Friday and perhaps not for another 3 weeks, respectively) - THANK YOU for praying and caring!

We got to touch and talk to him yesterday. He was doing so well on his oxygenation when we did that and as I sang to him "I am Jesus' Little Lamb" the nurse had to turn down his oxygen delivery percentage! What a special time. Today I am going to be there while they change his bedding. I'm sure Gavin will run up too if he is able to get away from his other appointment early.

Seth with all his tubes (still gorgeous!) :)

Marcie is in an open crib! Pictures to follow. :) She's also on a lot less air flow (3 liters per minute vs. 5) through her cannula and on no oxygen! She's doing great, praise God!

"What was THAT!?" (Will)
David and Will are on the minimal airflow settings, nasal cannula only, receiving 1 liter per minute of room air. We are so thankful for that, as well as for their bottle feeding success which began yesterday. Those boys went to TOWN on their bottles! Amazing when you think everything has just gone directly to their stomach via tube prior to this. They've never had to suck, swallow, breath before. David was actually sucking faster than was good for him and had to be paced. :)


A reflective moment afterwards
Mom and Will after his bottle
David with Dad and in his Navarro clothes!

Gracie is precious and doing well, gained 10 grams last night (we'd like to see more than that, obviously, but are grateful nonetheless). I need to go hold her, so I'd better close now! She's hard to take pictures of because it's too dark and she wears the big CPAP mask.

Love and gratitude for your prayers and all the ways you show you care,

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

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

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