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

Monday, October 1, 2012

pulmonary hypertension, PDA, infection and eye exams

Hi everyone,

How's that for a subject line?! It's been an interesting day. Also a lovely one, as we got to hold all our babies but Seth, and I got to be with Seth during his echocardiogram and for a long while afterward, stroking his temple and singing to him. He seemed really comfy and happy. He looked at me for a while, then went to sleep, and his oxygen saturation stayed good the entire time. Thank God he wasn't so "touchy" today and handled his exam so well! He is SUCH a precious little boy. It satisfies me deeply to be able to touch and kiss him and smile into his sweet eyes.

The results show that he has pulmonary hypertension again, so he is back on the full dose of nitric oxide - he had been weaned to 12 ppm; is now on 20 ppm. His PDA was tiny, thank God, but the nitric dilates all blood vessels so it's likely the PDA will also enlarge as they treat the pulmonary hypertension. It's such a tightrope walk and roller-coaster! I don't even really know how to pray except for healing. Obviously the Lord doesn't need me to pray for all the right things in order to do what's needed for Seth. Sometimes it really does seem as though our prayers are just groanings, and we depend on our Triune God's wisdom, love, intercession, power and sovereignty. Thank you for joining us in prayer; a HUGE encouragement!
Seth all bundled up after his echocardiogram

Seth's sweet profile. He's 4 lb 13 oz tonight.

A huge praise is the good eye exams on the "older" three babies (A,B,C; aka Will, David, and Marcie). No evidence of retinopathy yet. David's blood vessels have grown out to zone 3; Will's and Marcie's are still in zone 2. None of the retinas are fully developed yet, but they will continue to until the babies' actual due date in early-November and beyond.
David is Daddy's Allstar! (so are the other kids, of course!)

LOVE the camo pants! And the faces. David is king of faces.

I got to tandem nurse David and Will today! They did great - SO CUTE!! Will was really not interested at first, but when David joined him on the nursing pillow he looked at him and latched on just as David did. It was so funny, like he was actually competing! Will is 6 pounds even now! David is 4 pounds 8 oz; 2 oz less than Marcie. Come on, David, man-up!

Will snuggled in after his feed. I want to kiss and cuddle him NOW!
As much as I want them home, though, I realize I need to enjoy the freedom I have while I have it.
Marcie keeps forgetting to breathe and having low heart-rate episodes. She is too old to get the caffeine early preemies receive to stimulate breathing, so she's needing higher airflow still from the cannula. We pray she'll get better at regular breathing.

If David is king of faces, Marcie is the princess of poses

Big yawn! Daddy is holding his little girl.
"I'm perplexed . . . why did you put me down, Dad?"
(So sweet: thank you for the clothes, Wanda! Too bad Gracie is so tiny still; otherwise she could match.)

Gracie is so sweet, doing well on a lower setting on her CPAP. She is still 3 pounds 8.8. oz. She is well-loved and often commented-upon because she has such big eyes and is so alert - not that you can tell from this picture! See the posts from when she was at Children's to get her PDA ligated. :)

Love and gratitude,

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

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

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