I didn't blog last night (Friday night) because things got pretty chaotic. Basically Emma couldn't take her 9:00 bottle, and her breathing has gotten worse. She's choking A LOT more, and they had to start her back on her IV fluids instead of taking a bottle. The ironic thing is that they took the PICC out of her leg Friday morning...and then had to put an IV in her head Friday night.
We are waiting to see how she does in the meantime. This is so incredibly painful, and I'm on a roller coaster of emotions. The mornings are usually the hardest times for me. It's so hard to wake up and face a whole day knowing that our daughter is fighting for her life. I immediately start the day praying that God would be merciful. This is all I can pray for now...because I don't even know what, specifically, to pray for. But His mercy on her is all she needs.
In the meantime, I'm trying my best to enjoy each moment and not look ahead...because we don't know what lies ahead. As I've said, she is moving her legs like a champ. So we're enjoying changing her diaper because she's hilarious kicking her legs around. And she is VIOLENT with those kicks. She makes it so difficult to put a diaper back on, but we love her for it. I so enjoyed sitting next to her today while she napped - I lowered the side of the crib and laid my head on a small pillow on the edge of the crib. It was the perfect position for me to gaze at her long eyelashes and perfectly pouty mouth; she held my pinkie finger for an hour.
Before my sister went back to Louisiana, she bought Emma a precious doll in the gift shop. I realize this is a typical hospital/gift shop gimic, but it's adorable. You squeeze it, and it says a prayer. I swear they actually recorded a child saying the prayer (or a variation of it) that so many of us grew up praying:
Now I lay me down to sleep.
I pray the Lord my soul to keep.
May angels watch me through the night,
and keep me in their blessed sight. Amen.
Here's a picture of Emma snuggling with her buddy. She was gazing at it saying the prayer, and I caught this picture right as she fell sleep.
Oh, and the weird-looking hospital blanket in front of her face is actually a handy contraption to keep her binky in her mouth. The blanket is rolled up and taped together, and the binky is taped to it. You put it next to her so she can snuggle with it, and she doesn't really spit the binky out. It's her binky buddy.
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Praying for God's mercy for dear baby Emma. Did you get the results of the reflux test? Emma is a little trooper. Praise God for her strength and energy to be able to kick her legs and feet and keep mom and dad on their toes when changing her diaper.
ReplyDeleteI am praying constantly for Emma and Mom and Dad.
I am so glad to hear the great news about her strong legs! What a great blessing. It is nice to be able to count those! Keeping you all in my prayers. Sharing your story daily. Virginia
ReplyDeleteHey Young family. My name is Callie Coleman and I also have a son with SB and Hydrocelphas. I have been following your blog for a while now. I will continue to pray for Baby Emma and also for the two of you. When I look at your pictures on the blog and on Face Book, it brings back so many memories from when Cade was in the hospital. I undersand what you are saying about not even knowing what to pray for. When our journey first started out, I was praying for specific things then I found myself just praying for strength and peace. Take it one day at a time-thats all you can do!! You WILL see a light at the end of tunnel-promise. I am here if you need anything...I live right down the road from the hospital and I would love to bring you lunch or a coffee or coke-whatever. I will do it!!! You can e-mail me-whitecallie@hotmail.com or call me (864)561-9675. Take care!
ReplyDeleteCallie Coleman
MB,
ReplyDeleteI know you'd rather just be home with the normal "crazies" of a new mom, but I believe God has a special plan for you and Russell through your precious baby Emma. I see it in the blog posting and know that is only a drop in the bucket of what He is doing through your tough, tough journey.
Even the posting from Callie and her proximity is such a God-thing. Just know that if you ever need Abbey to come for just a hug, we will be in the car and on the road before you can say, "yes."
May you feel His bubble, strength and peace as you walk in this minute only.
Melanie Diehm
MB - You posted awhile ago that if God wanted to take her, to just take her. And then you wondered if you sounded horrible for thinking it. I know you want what is best for your precious child, whatever that may be. You always will. Becoming a parent changes your understanding of what compassion is. I am praying for you and Russell and little Emma. I believe God is hurting as much as you are - He loves us the way you love Emma, if not more.
ReplyDeleteYou are a strong example of faith for many people, and your struggle is serving a purpose already. 2 Corinthians 1:3 & 4 - some comforting words if you need them.
We love you -
The Lewis Family
PS - I love the binky buddy and the cheesy gift shop doll. Little things help!
ReplyDeleteTeri