Friday, March 13, 2009

Trisomy 13

We received the results from the rapid genectics test. Evan has Trisomy 13. They are doing a more in depth test that we are still waiting for to determine exactly what is going on with that 13th chromosome, but we have some basic information about Trisomy 13. We do know that he does not have the huge cleft lip and palate that most trisomy 13 babies have and his brain is fine. He does have some major sight issues and while the doc would not come out and say he is blind he did say he would be severly sight impaired. He does have an extra pinky on both hands, but they have no bone and are connected only by a vein. They told us not to be alarmed if they just fell off soon. He also has an extra pinky toe that is attached and probably staying. He hates to have his diaper changed, but loves to be held. The last part has nothing to do with Trisomy, but just makes me happy. We do know that Evan is a gift from God. We may have him for two week, 7 months, or 5 years. We do not know how long God will let us have him here, but we will take each day we have and treat it as a gift from God.

When I woke up yesterday (Thurs.) I was so swollen my eyes would barely open. The docs and nurses had tried to get me to sit down and lay down most of Wed, but I pretty much stood at his bed and did not drink or eat like I should. They figured out how to get me to sit down was to just put a baby in my arms. Actually one of the times I went to pump Sean told the social worker that it would help if I could somehow hold him and she arranged it. I don't know how many hours I sat with Evan in my lap and my feet up yesterday, but I am not nearly as swollen today. Evan really loves to be held also, Sean holds him while I pump. It is a mess of wires and tubes, but they have done whatever we wanted and untangled wires and rearranged things so we could hold our son. He gets pretty uptight and draws his knees up and his shoulders are just stressed but when we hold him he relaxes. It also does my heart good.

Thank you for all the prayers and calls and emails. Talking is really hard right now, but I cannot tell you how much it means to have constant reassurance that he is being prayed for and people care about all of us. If you are sending us messages on facebook we are getting them through email, but we cannot respond because Childrens has blocked facebook. We have not told Grace and Garrett yet. We are meeting with some people from the hospital today who will help us figure out how to explain everything and prepare them for what is going on.
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16 comments:

Julie said...

I am continually praying for you all, Monica. I love all of you. I love Evan! Hold that sweet baby as much as you can and get rest. In God's wonderful Love, Julie

Lexie said...

You all are weighing so heavy on my mind and heart....just continually thinking and praying for you. I'm glad that he likes to be held, that makes it even better. Hold him much. He IS a gift from God and only good things come from above.

Michelle said...

I'm glad you are starting to get answers about your sweet baby boy. You are a beautiful family and I'm happy that you are getting to spend lots of time bonding with Evan. I will continue to pray and think about you all.

Stephen said...

You All are in my prayers, our God is Awesome and he loves all of you,
Coach Steve

StephF said...

Praying without ceasing for all of you. Cuddlers are the best! Get some rest and let me know if there is anything you need!

Andi-bo-bandi said...

I don't know you but was linked here from another blog that I read regularly. I am praying for you and your family and your precious Evan. May the doctors find the answers they need to help your little man.

Be blessed!
Andi

shawnda said...

I have been praying for him and for your entire family. You're spirit is amazing through this and I know God is holding you and Evan and your family in his arms. He is a beautiful baby.

Becky said...

We are still praying for your precious family. I love that you're getting to hold him so much! What amazing parents you are.

The Shaw's said...

OH it is SO GOOD to see him in your arms. I am not surprised at all that he wants his momma and that you bring comfort to his bones. I am glad that you have received some answers and we will continue to pray for all of you. I am telling many prayer warriors to pray for you! I pray you get to hold him all the time. I wish I could be there now to pray with you and give you a huge hug and kiss your sweet baby. So I am going to do that the only way I can... through this post.

Dear Gracious Heavenly Father,
You are the life giver. All good and perfect gifts come from YOU. Thank you for Evan. Your handiwork is amazing. You knew him before he was born. I pray that Your will be done. Please bring Your peace that passes all understanding to Monica and Sean. Place the words on their lips to talk to Gracie and Garrett. Guide the doctors hearts and minds as they determine the best treatment and care for Evan. Show Yourself mighty through Monica and Sean. Let all of creation be a reminder to them of Your power. Bring them rest and comfort. Bring quick healing to Monica's body, allow the little sleep she has to be multiplied. Thank you God for Your goodness and mercy. Just POUR your love out on this family. We know that You can do exceedingly and abundantly more than we could ask or imagine.
Amen.
I love you Monica. HUGE hugs to you and kiss that sweet baby for me. He is soooo beautiful.
Rhonda

Kendl said...

You are in my prayers.

Tammy said...

Monica - know that you and your family are in my prayers.

Leigh Ann said...

I am lifting all of you up and know that I will continue to pray for Evan's life.

Patrick said...

Sean and Monica,

Just wanted you to know that I am praying for you and for your three sweet babies. I am so thankful to that wonderful social worker for making it possible for you to hold your darling boy. I'm praying God's grace and strength poured out on you. Much love, Becky Stewart (posting under Patrick's name)

Courtney said...

Oh Monica, he is beautiful. Please know that you are in my thoughts and prayers and hold Evan and enjoy every second you get with him! I hope that ya'll find a way to share this time with Grace and Garrett as much as possible and let him feel your love.

I love ya girl!

Melissa Southerland said...

Monica,
My family and I will be praying for you and your precious family!

Love and Prayers,
Melissa

Erica said...

I love this picture of the three of you!You look beautiful...Sean just looks happy to have his lil boy. I have faith that everything happens for a reason & that God has his arms around your whole family. I have thought & prayed for you tons! I'm so glad you have a way to update all of us who care so much about whats going on in your life right now.

Love, Erica