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, August 28, 2012

Little gray Gracie; update on Seth

Grace:

Gracie has been experiencing precipitous drops in her heart rate and oxygen level; twice while I was there today her oxygen dropped from the 90%'s down into the 50%'s . One time I was "nestling" her (one hand on head, one on chest, the only kind of holding I can do yet with her and Seth) while praying, talking and singing to her. She suddenly just alarmed and went gray.

She also lost weight yesterday rather than gaining, which was a warning sign.

It turns out her patent ductus arteriosis (PDA) is very large again. She is being started on medication at 10:00 tonight. We will know by Thursday morning if the medication was enough to close the PDA again or if she will need surgery. The medication is not usually as effective this far out from birth date, but they hope to avoid surgery because of the risk of infection.

Meanwhile, she is receiving a blood transfusion to counteract her anemia (low hematocrit).

We pray God's will be done and ask Him to protect our little girl, recognizing she is truly His little girl.

Grace after one of her spells
Seth:

Seth's blood carbon dioxide rose dramatically at just one setting lower on his ventilator, so they had to turn it back up again. They have been unable to wean him at all from support, although thank God he needs less oxygen than he needed prior to receiving the steroids (40%'s and low 50%'s vs. 60%). He has chronic lung damage and just isn't healed enough yet to cope with any lowered amount of support from the oscillator ventilator. Please continue to pray for his healing, peace, and protection in every way.

Seth
Marcie and David need to gain weight. David hasn't netted any real gain in the past week, but wow, is he alert! (Picture below)



Will is was on a lowered CPAP setting today, an encouraging sign, but is still needing oxygen whereas Marcie and David are on room air only through their CPAP. Will is growing well, thank God.

I got to hold Marcie today, comfort Will with some hands-on time, change David's diaper, and "nestle" Seth just as I did Grace, also while singing, praying, etc. Each child is SO incredibly precious and beautiful. Thank you for praying for each. We know God loves them more than we can imagine.

Love,
Carrie

10 comments:

  1. I think of you and your family often through the day and I say a little prayer every time I do.
    L'Norah (from the MFM office)

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  2. Seth and David are so awake, and David is looking at Proud Papa....Looking back at the pictures when they were born they all have come a long way!!! Remember that....It must be so Peaceful for the Babies to hear your voices and feel your touch...and for God to pick the special nurses and Doctors for each Baby...It's a hard journey But God Bless you both, and may God keep the Babies in his loving care...."I don't understand but WE believe"!!

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  3. praying with and for you. I am so thankful that Gracie and Seth can now feel your comforting touch. And to hear you singing to them. What a blessing. God is there with each of you, as you know and are living. Just keep your hands on those sweet little ones. Thankful I can be a part of praying with you all.
    Blessings,
    Jo Miller

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  4. The computer was on when I came down for my quiet time and I checked things out.
    I will be praying for them during this time. I woke on and off during the night and prayed for them. Judith

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  5. We are continuing to pray for you and your babies.

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  6. What a roller-coaster indeed. Praying, praying, praying.

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  7. I found your blog right after the babies were born. I pray for them each and every day. Have faith in the Lord and he will make it all well. Each day they are alive is a miracle and they will continue to grow and heal. God bless you and your babies and family.

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  8. I will pray for your little ones. We had a 29 week preemie who had to have pda ligation. It really helped him afterwards. Every child is a miracle and I am glad they all belong to Him and oh, how He loves each of them. Your pictures bring back so many memories. God bless you as you go through this special trial. Keep trusting and loving each other.

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  9. I will be praying for these requests. We know firsthand the ups and downs of the NICU journey, and that was with only one baby (born at 23 weeks--now a beautiful, healthy 8 yr old!); praying for the Lord to pour out His grace, asking Him to give you the physical and emotional strength you need during these long days, and that His healing hand would be upon Gracie and Seth.

    God bless!

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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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