Wednesday, April 29, 2009

Johanna Raye Carswell

Yes, my friends we are having a girl. After much deliberation, and when I say much, I mean a whooooooooooole bunch, we have decided to name her Johanna Raye Carswell. She is due at the very end of October.

We also received the preliminary results of the CVS. Unfortunately the news was not good. Actually, it was the worst possible news that we could have received. Johanna has Trisomy 18. Simply(and mind you this is not a simple diagnosis), she has 3 parts to the 18th chromosome instead of 2(like you and I have). Trisomy 18 is generally fatal, with most of the babies with this condition dying in utero before they are born. Of those that are born, most pass away within a few days, and a very very small percentage will make it to you a year. Like I said not good news.

This is obviously not what we wanted to hear. But, God has a plan. I have no unearthly idea what it could be. I don't know what the future holds for Johanna. I don't know if she will survive to be born, or if she is born I don't know how long she will live. But, I do know that my God loves Johanna, Clayton, Chad, and me.

1Bless the LORD, O my soul: and all that is within me, bless his holy name. 2Bless the LORD, O my soul, and forget not all his benefits: 3Who forgiveth all thine iniquities; who healeth all thy diseases; 4Who redeemeth thy life from destruction; who crowneth thee with lovingkindness and tender mercies; 5Who satisfieth thy mouth with good things; so that thy youth is renewed like the eagle's.

I don't know if this passage from Psalm 103 fits what has happened today, but I like this passage. It reminds me of who God is. How big He is.

Thanks you for praying for our family. Please continue to pray that God would have His will. I don't know why He has chosen us to go through this, but He has.

24 comments:

Spellbound said...

http://annabelgrace.blogspot.com
http://mylittlevera.blogspot.com

I will pray for God to give you guidance through this difficult time.

Adrienne said...

My heart aches for you and your family but God does have a plan and you are already so strong in your faith. Your daughter will be a blessing to you and your husband. Please know you are being prayed for.

Simply Donna...... said...

Will I am glad that plum now has a name and a beautiful name it is. God does work in mysterious ways and we both know he has a plan. Hang in there! I am here for you whenever or whatever you need. XOXOXO (yes even the stress eating) hmmmm chocolate syrup!!!

giraffe07 said...

You don't know me but I came across your blog through Kelly's blog. I am in awe of your faith and you are very inspiring. You are so right that God has a plan. We are not here for ourselves. God placed us here for Him and His plan so that through us His Glory will shine. It's so hard to always praise His name especially now but God is good all the time! He will not forsake you. He is with you every step of this journey. I will pray for your precious Johanna!
Friends in Christ!
Colleen

Courtney said...

As a mama who's walked this journey, my heart is so heavy for you. You and your family and sweet girl will stay in my prayers. I'm not sure if you've been directed to it or not, but http://www.trisomy18support.org was absolutely wonderful while I was going through my journey with my pregnancy with my daughter, and even now. My user name on there is Mrs_E .. If there's anything I can do besides pray, feel free to get in touch with me. :) God Bless you.

Monica said...

I am praying for you. Livingwithtrisomy.com is a good resource as is SOFT (www.trisomy.com). I don't know why God has chosen Johanna for this, but I do know this. "Though He brings grief, he will show compassion, so great is His unfailing love. Lam. 3:32"
I am praying.

Erin said...

This might be just a strange occurance but my friends baby Olivia was just diagnosed with Trisomy 18 as well. I feel like I should link you to her blog...http://astirringlife.blogspot.com/

I will continue to pray for your sweet Johanna as I pray from my friends Olivia.

Preachersgirl3491 said...

I am so sorry about the news and so sorry that I am loser who went to the dentist (Jesse I am sure told you all about it) and did not get to come and hug you in person. I love you guys soooo much and you do not know what an inspiration you are to me in my walk with God. Johanna is a beautiful name for a beautiful blessing from God, and you know no matter what Uncle J and Aunt Amy are here for what ever you guys need. I love the relationship that you and Jesse share and thank you for letting me be your sister and such a big part of Clayton's life. I love you and am praying that God's Will be done everyday.

jenn said...

God's ways are higher than ours!! I am praying for you guys and that precious baby girl johanna!!

I am inspired by your strength!

Thank you and know what me and my family are praying for all of you here in GA!!

Blessings!

The Parker's said...

I am so sorry. I will be praying for your family. You are right, God does have a plan and it's probably beyond anything you can imagine or understand.

The Parker's said...

I'm sorry for multiple comments. I also want to tell you about Now I Lay Me Down to Sleep. They provide bereavement photography for parents free of charge. Even more than that, however, they have a forum for parents and family members who are going through the shock of a devastating pre-natal diagnosis and for those who have lost their babies. The forum is www.nowisleep.com and it is a very tight-knit and welcoming community of mothers and fathers who can relate to each other on a level nobody should have to. The main site is www.nowilaymedowntosleep.com

Old School Acres said...

My heart, too, aches for you. I am praying for you to have strength and feel God's arms around you.

jamielynn said...

i don't understand it either. nobody really can. remember "his thoughts are higher than our thoughts his ways above our ways.." i'm not sure if that's exacty how it goes but basically you know what i'm talking about.

God said if we have the faith like a grain of a mustard seed you could move mountains. maybe we should get some mustard seeds.

johanna will be beautiful. i was thinking.. johanna raye. i wasn't all for it until i saw it wrote out then i LOVED it. hahaha.

His will be done. Always. Never give up on Him not matter how hard it is to hold that faith. I know that I can't even comprehend what you are going through and i'm only 17 (18 tomorrow) but if you need anything just call me. really.. Love You!

Mommy to those Special Ks said...

Oh Nikki, this post brought tears to my eyes. I was praying SO hard that if it was indeed a trisomy that it would be 21...

The Lord knows His plans for you and Johanna (LOVE her name by the way). I will be praying that He makes that plan clear to you. There are many other families that have walked this path before you... I know they will be by to offer support.

We will pray you through every step of this journey with Johanna, the beautiful life being created within you. Keep on keeping on.

Phil said...

Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.~Phil 4:6-7

We love you guys and are praying for you and your family!

Lacia said...

I am so sorry to hear this news.

Praying for you and your family.

Stay at Home Mommy said...

Nikki I don't know what to say but I love you and I am praying for you.

Amy said...

Praying for your family during this time. Here is a blog I ran across a while ago. It is http://tristanasher.blogspot.com/. It's one family's journey through having a child with T18. She has several other links on her blog to other families that have had similiar experiences. I hope these help. I will be praying for you.

Amy in Tennessee

Meredith said...

Johanna Raye is a beautiful name. Sending prayers from Illinois. I am amazed by your strength and thankful that you are sharing your story.

Rebecca said...

Oh, Nikki!

I cried last night when I read the comment you posted on my blog about just receiving your diagnosis. My heart sunk & grieves for you, knowing full well what you are experiencing. You and your family were on my lips last night, crying out to God as I fell asleep & my thoughts turned to you as I woke up this morning.

Although I am a perfect stranger, I know we are sisters in Christ & partners as we walk this seemingly rare road. Feel free to email me or visit my blog anytime.

The Carter Family said...

My heart is breaking for your precious family with the news. I will continue to pray for your family. May you feel God's arms around you now and always! (LOVE her name!)

escott1916 said...

Dear Family,

I was brought to your site via another I read anonymously. We lost our precious daughter, Addison Jane Scott, last May to T-18. Take care of one another during this time for I truly know how difficult the road can be. Sometimes it's nice to have people to lean on who have been there. I found the Trisomy 18 Foundation support group to be my biggest strength during my down times and still today. Love and prayers to you.

Beth

Callie said...

Chad & Nikki,

You don't me, but I saw a link to y'all's blog on another one I follow. I'm so sorry to hear about Johanna's diagnosis. I have a special place in my heart for Trisomy 18 babies. I'm a NICU nurse and I was so impacted by a sweet Trisomy 18 baby girl named Dereka that I cared for last January. God's plan for Dereka only spanned a few weeks on this earth, but the impact she had on her family and friends (and nurses :-) will last for years to come. And I'm confident that her story is continuing in Heaven. I am praying for all of you, including little Johanna. As others have said, God's ways are so much higher than ours, and his plan for Johanna is probably something our human minds couldn't even fathom. I'll be praying for all of you as He reveals his will for Johanna to you.

Rachie (Walker's Mom) said...

Wow. Just stumbled upon your blog through some friends. Just want to tell you that your faith and focus on God's love during this VERY difficult time has left a huge impression on my heart. I know that he will use your testimony to reach many people for His kingdom.

Rachel Webb
babywebbsite.com