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,
Carrie

5 comments:

  1. So encouraging to hear the mutation is not causing troubles with Will and Marcie! And to hear Seth may just need some extra growing/healing time is indeed a "praise". So excited for you to hear David will be going home this weekend....not that it hasn't already but your life is about to take a new turn! Prayers will continue!

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  2. Carrie, what wonderful news about David. Will continue to pray for the others especially Grace and Seth. We know God can heal and will pray that he will.

    Michelle Coomes

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  3. All praise and glory to You, Father, on the continued progress of these sweet babies. We continue to lift up Seth for extra healing on his lungs, and now little Gracie, as well. Please, Lord, we would pray that it be Your Will that all of the babies would be brought to complete healing, so that they may all come home with no need for equipment or surgeries. Thank you for Your mercy and grace and providing as You have for this family. Amen. NKL

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  4. Thanks for the updates..... It is a marathon not a sprint for sure with preemies!!! God knew them and planned each day for them before the beginning of time and HE will keep His hand on them in every way each day and each moment!! They are such precious blessings!!!

    Hugs, Laurie

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  5. A couple more idea I did not mention in a previous post for breast milk enhancement since I was focused on brain development - n acetyl cysteine is very, very good for the lungs. See http://www.ncbi.nlm.nih.gov/pubmed/9556844- I am thinking more of Seth but maybe it would help Gracie too? R lipoic acid and CoQ10 might be helpful to but I would suggest looking into supplementing your diet with NAC at least and see if that helps their little lungs to mature faster (and maybe they can get more than their "fair share" of your breastmilk?) Just a thought...I have been reading and praying since I first read of you all. Wish I could help but am single with twins in Fort Worth. I do have a nice scale and a twin nursing pillow that I still have not found a home for though if you are in need of those still.

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

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

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