Wednesday, September 20, 2006
Holding Steady for Now
The doctor came by at about 5 today. It's kindof a lot of information to try to remember, but I'll do my best. She did do better with her echo (heart ultrasound) on Mon. but how long could she really last off ECMO. Just to take her off ECMO would be a major operation (scar tissue and controlling bleeding as I had mentioned previously) plus the need to possibly open that VSD more (another very serious operation)- but once she's off ECMO they can't put her back on. She's really stable on ECMO but how long can she maintain that. The longest they've had babies on ECMO in 6-7 weeks (she's at 5 1/2). But he basically said she's far exceeded his expectations at this point. As I've said before I know that's only because of the Lord sustaining her. So the plan is to leave her on ECMO until Mon. and then do another echo to see what her heart looks like - possibly choosing to come off ECMO or not. We still have the odds against us. We would appreciate your continued prayers in the coming days as decisions are coming. My 2 biggest prayer requests is 1. tremendous discernment to the Lord's plan in all this - that we'd be able to hear His voice for the next steps - and 2. that we wouldn't have to make any "pull the plug" decisions. Obviously we continue to pray for healing and for the Lord to touch her body. I continue to be amazed at how alert she is when she's awake and how well she's holding out for this long. Thanks for your love and encouragement and prayers. Much love, the Joneses
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12 comments:
We are definitely praying that you don't have to face that tough decision. Payton has overcome so many challenges already, and she continues to amaze us all as God sustains her and keeps her.
Love you,
Sara
Dan and I pray that God will give you the discernment and strength for the days ahead. God is a God of miracles. No matter what the days ahead bring,may you feel His love protecting you. Philippians 4:5-6
Love,
Dan and Marilyn
Hello, Jones family! I have been following your blog for several weeks ... and praying for all of you. (My brother is Chris Jones from Rockford Christian ... and I found out about your blog from a link on a friend's blog--Shannon Nordgren.)
God has truly sustained you through such difficult times ... I will be praying that you will have strength and peace and discernment in the coming days.
What a blessing from the Lord your precious Payton is!
Praying for you in Rockford, Illinois!
Hey, Joneses,
We pray for you all, that the Lord will continue to sustain you as He has been doing throughout this whole time. We pray for discernment, and for Payton's strength, and for the doctors who are caring for Payton. We are headed to Ohio tomorrow through Monday, so I may not get to check in until Tuesday. Know we are still praying, though!
We love you!
Karen & Brian Johnston
May Christ provide all your needs in this process! We love you!
Marcus & Eileen
Still praying for you! Aiden tells people often of baby Payton- I think he is gathering more prayer support for you at only 2 1/2!
Much love,
Paul and Melissa Scholten
This song came to mind yesterday. Thank you Pat Noble for sending the words to me.
God will make a way where there seems to be no way.
He works in ways we cannot see
He will make a way for me.
He will be my guide
hold me closely to His side
With love and strength for each new day
He will make a way.
He will make a way.
Praying for wisdom for you and her medical team. I keep remembering Landa's words the day Payton had emergency surgery - we ask that God spare her life and heal her heart.
Love you all. See you tomorrow.
Grandma and Grandpa Minnick
We haven't forgotten about you guys in our office. I thought of you today Aaron as we opened a two pount bag of Twizzlers--I know you are a Red Vines man--but this stuff was fresh and tastey and got us through a second full day of meetings.
Know that we continue to pray for God's gracious hand on you two and Payton.
Love, Patty McCain
We love you both. Aaron, we are praying for a day soon that will be boring enough to play hand-held Yahtzee! We pray for Payton daily, and we pray for God's sustaining peace to continue to rest on you.
-Dave and Joy Feldner
Hi Aaron and Heather, from 2 fellow former SCSU-ers, Jen and Kayle Vick :) Gina has kept us updated, and we are praying daily now for your beautiful Payton to receive healing and a heart. She looks so precious! Serious cute factor happening there! We serve a big God...and we are praying, standing, and believing with you for a miracle.
Love, Jen and Kayle
We are continuing to pray for you 3 and will give Him no rest! Standing with you in prayer! Josh, Tammy and Abby
We wanted you to know that your prayer circle extends all the way to Colorado! I'm Cathi Kruse (formerly Cathi Leasure of Randy and Ginnie Leasure from HOPE Free Church) and my family and I have been mercilessly lifting you guys up before our awesome Lord. Having been healed myself I know firsthand it is still a way that God shows His presence to us here on earth, and my heart's desire is for Payton to be healed by HIs mighty touch. May you all find peace on this long journey. Please know you are on our church prayer list as well, we will always be thinking of you.
Love in Him,
Nate, Cathi, Shea, Tenley and Baby Kruse from Colorado Springs
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