Tuesday, March 15, 2011

Detailed Update

Hi all. This is Chris.

First of all, Tonya and I would again like to thank everyone for their thoughts and prayers. WE ARE truly blessed to have such an AMAZING group of friends and family like you!!!!! Words can even say how much you all mean to us.

I wish I had better news to report, but that is simply not the case. We learned a lot yesterday, but unfortunately, nothing was good. Our boy has what they call Encephalocele. There is sac forming on the back of his head and was called moderate to severe in size, and the doctors found a significant amount of brain forming in the sac which is very serious because if our boy makes it through child birth, the brain matter in the sac ends up dying and has to be removed with multiple surgeries. His head is dangerously small, in the 3rd percentile, which means out of every 100 babies born, 97 of them have larger sized heads. Also, his kidneys are not developing properly and his left kidney is in the wrong place, located in his pelvis. The fact that there are 2 separate uncommon abnormalities forming at the same time, the geneticist thinks there is some genetic cause for this, which could end up affecting future pregnancies, but they cannot be sure without further testing which will have to be done by an autopsy. The doctors do not believe our boy will survive with the amount of brain tissue forming in the sac and have suggested that we end the pregnancy. They believe that this wasn't caused just by neural tube defect, but a possible brain defect that possibly could mean that our boy is brain dead at this point and all the movement is just reflexes. This is why they believe there is no hope and have given us information on the Shining Stars program which is basically Hospice for infants if we decide to let nature run its course, which at this point is our plan. The doctor’s feel that the baby probably will not survive full term, and if that is the case, Tonya will be induced and have a still birth. If our boy does survive to term, generally there is a very high mortality rate and we might have a month or so with him, if that. They have stated that the health of Tonya is the most important thing at this point, so no C-Section or fetal monitoring will be performed because the damage from the abnormalities are already too great. Now, there is a VERY small percentage of children who do live through this but they are severely handicapped and need 24 hour care pretty much the rest of their lives. Most end up never being able to talk, walk, sit up, see, and or hear. They cannot tell us because every one of these children with this condition is different.

We know doctors can be wrong, but at the same time and have to prepare us for the worst case and do not want to give us false hope. Initially, the news yesterday had absolutely crushed all the hope we had in our hearts, but after long talks and prayer, we just refuse to give up all hope, even though the doctors seem to have none. There are still miracles that have happened and I know there are kids that have survived, but since ever case is different, we just don’t know how or what to think.

This whole ordeal is absolutely crippling to me mentally at this point. No matter how hard it is on me, i can't even imagine how much harder this is on my wife. Tonya, i absolutely LOVE YOU WITH AL MY HEART and no matter how this plays out, we will get through this. We will put our faith in God knowing there is a reason for everything he does. That being said, you have no idea how hard this was to write this!

Again, even with everything that is going on, we can't even express how fortunate we are to have a caliber of family and friends that we do. Thanks again for all the prayers and thoughts. We will be filling you in as we know more. This will be a very long process.

LOVE YOU ALL!

Chris, Tonya and Kayla

14 comments:

  1. I love you both so much. I wish there was some way that I could help. I know what they said to us yesterday. I've gone over it in my head a million times. I love you Chris I don't want you to think that I am not hurting for you as well, but I cannot stop crying for my sister. It is tearing me apart to see her suffer like this. I've never felt so helpless before.

    If for nothing else but the two of you, I refuse to let go of all hope. God has a reason. I know I will never understand what that might be but I will never give uo trying to understand. I will never stop praying for you both, for Kayla, and for your son. I'm here for you no matter what you need. Anything, anything at all I'm here to do whatever I can to help you.

    I love you.

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  2. Chris,

    God bless you for having to put that into words.Not only are you suffering-but at the same time you have to protect your family.
    My family and I are praying for you,Tonya,Kayla and your son.
    There are NO words I can write that will help.I will be praying for all of you-as that is all I can do.
    May God be with your family during this journey.
    Love,
    Jen W.

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  3. Thank you, Chris, for updating us. Please know that you are in my family's thoughts and prayers and that we are sending love to you, Tonya, Kayla and baby.

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  4. Praying that you feel God's loving and compassionate arms wrapped around you.

    I know there are no words. Sending hugs and waves of love and continuing prayer for all of you.

    Love,
    Laura W

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  5. I have no words just sadness. My heart is breaking for your family. I'm so sorry you all are going through this. It feels like every word that comes out of my mouth is just generic and doesn't mean much. Just know my thoughts and prayers are with you and yours.

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  6. Tonya and Chris - I love you guys and just know that I'm always here praying, loving and supporting you.

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  7. I was praying so hard for better news. My heart breaks for all of you. I will continue to pray and hope for as long as you do. Love to all of you. Let us all hold you up when you're not feeling strong enough. <3

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  8. God Bless All of you. Chis your update of all that Tonya and you are going through was heart wrenching. It must have been so difficult to put into words. You both are amazing! Just know that we love you all so very much and that you are in our thoughts and prayers. We are here for You, Tonya and Kayla if there is anything at all that we can do please dont hesitate to ask.

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  9. Tonya, Chris & Kayla
    We love you, we are here for you anytime.


    Praying with a very heavy heart
    Don, Patty & Jenna

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  10. I am so sorry. I am praying for your family. I can't imagine what you are going through. If you ever need anything at all don't hesitate to ask.

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  11. I don't know what to even say, there are no words that can even bring comfort I'm afraid. I am thinking of you all and praying for you all the time. I am just so sorry. Anything I can do, I will. Love you Tonya.
    Suzanne

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  12. Chris,
    I will keep you and your family in my prayers! Stay strong and have faith
    Patty Bechtel Cady

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  13. Tonya,
    My heart completely breaks for you and Chris (Kayla too). Please let me know if there is anything at all I can do.

    Always
    Julie Chowning (Hood)

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  14. http://www.youtube.com/watch?v=J2CnUtVY35o

    The Christian group called Selah went through something similar and they share this video about their daughter Audrey Caroline.
    The song is wonderful.

    I pray the Lord be very near to you in all that you face. He has chosen you to carry this wonderful baby...
    Peace and Love to you!
    Suzanne

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