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

Friday, October 5, 2012

Update/Pictures Friday Oct 5th

Hi again,

Seth handled his transfer to Children's very well, praise God, and appears to like it there. :) He is in his own room with the top off his isolette, so it's more of a bassinet set-up. We took in pictures, blankets, hats, preemie shirts, etc. so he could have a more personalized space, see our smiling faces when we can't be there, and look extra cute. (Thanks Sarah, Shauna, Doris, Sandy, Aunt Joanne, Manns, Joan, Limbo Links ladies, Arlene, Carly, and others I know I am forgetting! He's so big he's already outgrown the hats from some of you!)  We also have the recording of my singing, talking and praying to leave there for his listening pleasure. He could only tolerate about 10 minutes of time with us today, but he really LOVED the time initially as evidenced by his oxygen saturation going up to 100% without the nurse touching any settings on his oscillator. After the 10 minutes he started de-saturating and went to sleep, so he was politely ushering us out. :) He looks great, so that was encouraging to us.

The comprehensive echocardiogram reveals a real answer to prayer: his pulmonary hypertension is being effectively treated without at all enlarging his PDA (which is just classified as "trivial"). The blood flow around his heart and lungs is not being affected by either issue currently, as I understand it. Oh, I hope and pray God heals him! The doctors are going to start weaning his nitric oxide (the treatment for pulmonary hypertension) very gradually and see how he does using repeat echocardiogram investigations.

His lungs are still very sick, of course, necessitating the heavy dependence on the oscillator, but we're grateful they've been able to wean the settings some. He still requires a lot of pressure to keep his lung tissue open, likely due to the surfactant gene mutation as well as the scarring that's already occurred due to oxygen and machine use. So the focus is to treat the lungs and wait and hope he can grow faster than this mutation and injury can hold him back. He's now 5 lbs 1.5 oz!

The other kids are doing well. Will had to be put back on cannula because he wasn't able to keep his oxygen saturations in the 90%s without a small amount of oxygen, and now that he's such a big boy he needs more oxygen for his growing body! He's 6 pounds 4 ounces. Gracie is 3 lb 12 oz, David is 4 lb 10 oz, Marcie is 4 lb 9 oz.

Gracie and Marcie are still having periods during which they forget to breath and drop their heart rate. We pray they outgrow that soon. Both are still on high-flow cannula and a bit of oxygen, Gracie more than Marcie. David is the only baby not on any breathing assistance at all. He's also the best eater, although the past few days he's not been the best nurser, despite starting out so eager. Will wins the nursing prize, hands-down! David loves his bottle too much, but honestly it might be nice to have babies that prefer the bottle. It would be hard if all were clamoring for my attention. :} Will hears my voice and starts rooting around. So cute!

The other babies are such a blessing to hold and cuddle at a time when I can't hold and cuddle Seth much at all. That doesn't take away our sadness about Seth, of course, since we only have one Seth and love him as dearly as we do his siblings, but at least there is lots of outlet for my maternal cuddle instinct and Gavin's desire to hold his kiddos. He's a great dad! He's pretty nuts about the babies. :) He's also incredibly involved with Isaac, playing with, reading to, and parenting him, all of this in addition to working parttime at the Center near us. He loves having the chance to labor with his hands and get projects done for various departments there. I am very proud of him and grateful for him!

David in his adorable hat from Shauna

Marcie smiling for the camera

Will is done eating and supposed to go to sleep now

Precious Seth


Our oldest son won Student of the Month last night at exactly the same time as our "youngest" son was being transferred to Children's Medical Center for more intensive evaluation. What a strange mixed day of sadness and joy. We are SO proud of Isaac, and he is so proud of being the big brother . . . times 5! Thanks for the awesome shirt, Lynn! He wanted to wear it again today. :)

Isaac LOVES his teacher!

I'd better end this very long post. Thanks for caring, reading and praying. We'll keep you posted as able!

Love in Christ,

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

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

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