My blog takes you along our journey as we learn at our 20 week ultrasound that our little boy will be born with a lethal skeletal dysplasia. Follow us through the tough choices, the long days, and ultimately the greatest joy. If you have come here and are faced with similar circumstances I want to give you one thing, something that was stolen from us by doctors, specialists, and even friends, and that is *HOPE*
Thursday, July 30, 2009
meeting with neonatologist today
Today at 3:30 we meet with the neonatologist at the hospital to talk about how much intervention we want, how hard we want them to try and save our little guy. We have already decided that there is going to be minimal monitoring during my labor. Thats as far as we have decided. Please pray for us. I really dont have the strength to go to this appointment and talk about my baby dying but I have no choice. I know that having him on a ventilator could mean months and months of him in the NICU. The last baby i was reading about with this condition was in the NICU for seven months and is finally coming home with nursing support. I feel right now that I couldn't handle that and part of me will be at peace i think if he just goes into God's arms where I KNOW he wouldn't suffer. But I am SO emotionally exhausted I shouldn't be making the decision of what we have for dinner, let alone for life and death. I have been in constant prayer about this and the only thing I have heard is to trust God and that is what I am going to do. I trust that if our baby dies that God will comfort us and that He will bring forth good from a situation that seems so bad. If our son lives and is in the hospital for months on end and is as disabled as they say he will be, our Mighty God will then give us comfort and strength and use our babys life and our story for His Glory! If our baby is healed and somehow gets to come home God's work will be evident to the world and hope will be renewed. My prayer for today is that God speak through the neonatologist today and through Nick and I. That we can sit there but when our mouths are opened ... God Speaks His Will... Have you listened to the Casting Crowns song... I will Praise You In This Storm???? It brings me to my knees... I LOVE it so much.. I think I want to put it on my zune to listen to during labor. I will close this post with the lyrics to that song...
Praise You In This Storm lyrics
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 lift 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 all.. thanks for being with us through our storm... Jenna
Sunday, July 19, 2009
Keep Prayin!
As we get closer to our due date I am so anxious. I am trying to enjoy the time I have with our little guy. He is so active I would never in a million years think anything could be wrong with him. I pray for healing every day and know that it is possible. I also try and prepare for the possibility of him not living. I read other bogs of other women going through this and I feel like a total wimp compared to them. I cry myself to sleep each night. My husband works early in the AM so I wait until he is asleep and I cry my lil eyes out! I am so thankful for my other children, my youngest is eight and he keeps me busy and I love that! I have been skipping a few doctors appointments, in a denial of sorts, or just wanting to feel "normal". Please continue to pray for a miracle.. knowing that God is fully capable.. please believe that with us.. we pray that his airway grows and is perfect and he is able to breathe on his own when he is born.. Thank you so much for those of you that are praying with us and believing! I will try and post more updates as his due date nears. He isn't due until the end of August (aug 24)but have a feeling he will be born sooner than that.
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