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Today we had to make some tough choices. Eden's condition leaves no medical options and keeping Eden on the respirator is prolonging things for no obvious benefit (other than selfish ones). The tubes down her throat and all the other medical devices are obviously causing her much discomfort and today, for the first time, I could see sadness in her eyes. She was looking at me and saying, "Daddy, please help me." My heart was broken.
I would gladly give my life for her. I would trade all my DNA for hers and take the T18 cells myself. I would sell all I had if I could help her, but these are not options. My only option is to allow God to do what He chooses. So tomorrow afternoon, we will take her off the machines and allow one of three things to happen. My heart is for #1 or 3, but not for 2.
1. God can perform a miracle and Eden will survive. A doctor could examine her after a few days and discover her heart looks fine. New DNA tests could reveal no T18. Eden would grow strong and eventually ask daddy for all that money he offered earlier! (For college I would guess). Eventually she would grow to know Jesus and accept Him as her Saviour and meet her parents in heaven.
2. Eden could continue without the machines for several weeks. Eventually the T18 issues would catch up with her and she would meet with Jesus before us.
3. Eden could continue for a short time, with no pain and just enjoy not having tubes and needles in her body and be with Jesus before us.
We want to be certain that Eden will not be in any pain nor suffocate or pass away with any discomfort. We will do NOTHING to prevent God from performing a miracle and will certainly be praying for one. I am told that the normal death would come from cardiac failure or CO2 buildup, which would result in a natural coma. If she shows signs of pain, we will give her pain relief but nothing to prevent life.
Please pray for me to be strong for my little girl and for my lovely bride.
This blog is to document God's wonderful creation through us.
I will praise You, O LORD, with my whole heart; I will tell of all Your marvelous works. (Ps 9:1)
About Eden
Eden is a miracle. (See details below)
From conception to birth, she has shown that "With God nothing will be impossible." (Luke 1:37)
After 19 years of marriage and no kids, God surprised us with little Eden.
From conception to birth, she has shown that "With God nothing will be impossible." (Luke 1:37)
After 19 years of marriage and no kids, God surprised us with little Eden.
Closeup
Prayer Requests
Please pray for:
| * | Health for Tina |
| * | Eden's memory to be a testimony for Jesus. |
| * | Strength for Eden's mommy and daddy. |
Psalm 139:13-14
For You formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well.
Birth Countdown
July 3, 2009 at 2:20pm
Current Status
Eden Lanay Graves
Born July 3rd, 2009 at 2:20pm
Sex: Girl (of course)
Weight: 1.38kg (3.06 lbs)
Length: 42cm (16.5 in)
Born at 33 Weeks - 4 Days
Diagnosed with Trisomy 18 (Edward's Syndrome)
Went to heaven: July 10th, 2009 at 9:05pm
Born July 3rd, 2009 at 2:20pm
Sex: Girl (of course)
Weight: 1.38kg (3.06 lbs)
Length: 42cm (16.5 in)
Born at 33 Weeks - 4 Days
Diagnosed with Trisomy 18 (Edward's Syndrome)
Went to heaven: July 10th, 2009 at 9:05pm
Eden's Time on Earth
7 days, 6 hrs, 45 min
Miracles of Eden
Here are a few of Eden's Miracles:
Ultimately, the doctors were right in the diagnosis, but the percentage of those who make it as far as Eden is minute. We are so happy we continued the pregnancy! It was worth it all for the seven days we had with her.
| * | We became pregnant at all. After 19 years of marriage and seemingly unable to have kids. |
| * | 12 Weeks. Her ultrasounds and Tina's blood tests showed Eden would not make it to 19 weeks. |
| * | 19 Weeks. The doctors were shocked that she was still around and the ultrasounds looked 'normal' |
| * | 23, 25, 29 Weeks. Doctors continued to be shocked. They told us we should expect to lose her soon. |
| * | 33 Weeks. Doctors decided to deliver her early but thought she would not survive the birth. |
| * | July 3rd. Eden did survive and lived for seven days. |
| * | She stole the hearts of Mom & Dad without doing much of anything. |
| * | She stole the hearts of many of you whom she's never met! |
Ultimately, the doctors were right in the diagnosis, but the percentage of those who make it as far as Eden is minute. We are so happy we continued the pregnancy! It was worth it all for the seven days we had with her.
13 comments:
I will definitely pray that God's will be done. I love you and pray that God gives you peace.
Kim
Dear John and Tina
Enjoy every nanosecond you have with your little girl!
I thank God that He is in control and His ways are perfect. I pray that you will know his comfort.
We too are praying for #1 first.
We love you guys
Ali, Phil and Josiah xxxoooo
John & Tina,
I can't help but think of this Casting Crowns song and what a testimony you have been.
"I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
”I'm with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I'll praise You in this storm
And I will life my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You
As the thunder rolls
I barely hear You whisper through the rain
”I'm with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth"
I love you so much!!
Linda
Hi again,
I was in this situation just 7 months ago.. with the exception that we knew Luke had T13 so no intubation... BUT I too prayed for your options 1 and 3. What God gave us was option 2... and I must say option 2 was GREAT! I was so scared of it, that he may be in pain, but instead he was very content, and got 5 months to gaze in our eyes are share all the love we had for him and he for us. God is good, and will only do what is best.
I guess I am saying- don't be too scared of option 2, option 2 can be good too if God is in control of it.
Will be continuring to pray for you all
Whatever choices you need to make, we know that you have pleaded for God's counsel and wisdom, and that you are being led by His loving hand. God will grant you peace (even with a broken heart) if you seek His will. We pray diligently for you and love you SO much. Dad & Mom
I am praying for a miracle. You all certainly desire one. Your faith is inspiring!
John & Tina
This will probably be one of the most difficult seasons of life for you. My heart breaks for you but at the same time, I know God doesn't make mistakes and He has allowed this joyful, but difficult situation in your lives for a special purpose, one that He will receive all the glory, honor and praise for. You may never know the full impact your testimony has made this side of heaven. I have no doubt it has blessed other Christians (just as it has me) to see an example of complete and total dependence on the Lord in a time such as this.
We love you and are praying fervently for God's will in Eden's life but also in yours and that His peace that passes all understanding will continue to sustain you.
Love,
Becki
Dear John and Tina: Praying for complete healing and trusting God with your precious Eden. We can have much comfort knowing He loves her more than even you and He is in control. He does have a plan and a purpose. I pray for you that you are able to continue to focus on our Lord.
Praying for you in Texas
Savor the following Scripture:
Psalm 139:13-16 For you created my inmost being; you knit me together in my mother’s womb. . . . My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
May you be showered by God's mighty love and healing powers.
Beverly
Dear Tina, John and Grandma,
Know that we continue to feel blessed to witness your faith, love, joy and heart ache as you walk this journey. We pray for God's continued embrace to be upon you, and to lift up your Angel Eden to perfect health.
Praying for you in San Diego with love,
Kathleen and family
Dear John, Tina and Eden,
I've been reading this blog over the last week or two in earnest, and I'm so encouraged by your faith, love and witness to Christ. We have no real idea what you guys must be feeling and experiencing, but Jenny and I have our hearts with you. Eden, you have a great set of parents and extended family!
Love you guys,
Nathan and Jenny
TOUGH, what an understatement!!!Praying that He comes upon (epi)you; gives you everything you need. 'When you walk through the fire / waters I will be with you.'
John & Tina,
My heart is breaking for you guys. I wish there was something I could do to comfort you. You have been such good friends through the years to Jackie and me. We will keep praying for you and your family. God's will be done! I know He will carry you guys through this. He is faithful.
We love you guys!
Daren, Jackie and Jenna
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