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

Thursday, October 18, 2012

Super quick update and prayer requests, praises

Hi all,

Thanks so much for your sweet comments about the slideshow! :) Thanks most of all for loving and caring about and praying for our kiddos and for us.

Quickly: Grace may need a tracheostomy if she doesn't make good progress these next few weeks. She has been unable to come down on her airflow (delivered by "Vapotherm" nasal cannula) and is still receiving oxygen. She will definitely come home on oxygen by cannula, it looks like, but if she needs a good steady flow of pressure to help her get the oxygen and remember to breath, she'll need to be on a home ventilator that will hook into a hole ("stoma") in her throat. Please pray she heals quickly so she doesn't need that! Her lungs aren't in great shape; easy to forget in the concern over Seth. A tracheostomy would also mean slight stomach surgery and a g-tube to feed her directly into her tummy. That is a whole new level of complexity and at least a week of full-time training for her parents. Overwhelming to think about, so we'll ask you to pray and take it one day at a time. The Lord knows and will enable! We pray He heals Grace to the point no surgery is necessary.

Will and Marcie both have the exact same genetic mutation as Seth, yet Gracie (who is the sickest of the other four) does not! Neither does David, which we expected, given that he is the healthiest and the only one not to have ever been on a ventilator. So the mutation appears to be much less of an issue in Seth's healing (or lack thereof at times) than we first thought. The specialists said this test of the others would be very telling, and indeed it has told us that babies can have the mutation and be apparently unaffected. (Marcie and Will are doing very well, on no or minimal oxygen and flow.) Again, the mutation is on one chromosome only and the paired chromosome is normal, so either this "mutation" is a normal variant or the corresponding gene on the other chromosome is normal and making up for the mutated one. This gives us great encouragement for Seth, as does the fact that he is creeping downward on his machine settings and his oxygen a tiny bit. PLEASE PRAY that continues, if the Lord is willing! He was so alert and sweet and tolerant of my cuddles and talking (and his Grandpadad's) tonight. I praise God for that time and for His work in Seth's precious, beautiful little boy body.

We are rooming in tomorrow night with David, learning all we need to about preemie care so we can take him home Saturday! WOW!!!

All the St. Paul babies gained weight today (no news on Seth's weight yet): Will is 7 lb 5 oz; Grace is 4 lb 7.4 oz, David and Marcie are both 5 lb 9.6 oz!

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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