Saturday, August 16, 2008

Still raining

After 2 straight days of rain, we're ready for a little sun. It seems like we've been right here before - post surgery, sensitive to every little fluctuation in our babies vitals.

Having her home with us, we learned how she communicates. When she's hungry, she does the cutest little thing with her mouth, sticking out her tongue like she scraping a film off with her teeth. When she's angry, she balls up her fists and scratches at her face & ears, usually accompanied by an attempt at crying. She opens her mouth and looks like she's about to belt out a cry but only gives a little "ehh," as if that's enough to get her point across. And it always is. No need for theatrics.

Last night she let us know how she acts when she's really in pain. I don't want to go into detail, but it was heart-wrenching to experience. Something no parent ever wants to see, especially from such an undeserving young soul. We tried everything in our arsenal to calm her, save picking her up, but nothing worked. Even moving her head to the other side made her bawl, so we were pretty limited. I'm guessing she had a splitting headache, no surprise considering the massive pressure changes it's been put through.

She's on the feeding tube, and had recently "eaten" but they let me try giving her a bottle anyway, since she was still chowing down on her pacifier. It actually worked. She took the whole thing pretty quickly, and it was one of her best bottle feedings to-date. No breathing problems at all. During and after, her eyes were getting heavy which was great - we wanted nothing more than for her to go to sleep so we could go home & do the same. But it was only a temporary relief, subsiding almost as soon as she finished the bottle (and burped). More rooting, fist-clenching and inconsolable crying. We felt every bit of her pain.

This lasted off and on for hours, finally resulting in an order of pain-relief medication for Alex. It took an eternal 10 mins or so to kick in, but finally it did and it was like a giant rock was lifted off our chests. She went right to sleep - relief for all of us.

As you read this, you may think it's not fair. This baby's been through enough - she shouldn't have to go through this. I know we certainly feel that way. But as I sit her with the rain steadily falling outside the window, I pray that I can look back on this experience as something that made us stronger. Made Alex stronger. It's cliche, but rainy days are essential for growth. And when we feel this helplessness, we go to the only one that's really in control, and lean on Him with faith that he'll get us all through this. And all of a sudden, the rock is lifted off our chests.

Although we pray for sunshine right now, I can't help but think of the lyrics to a fitting song:

Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory. And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain


Anonymous said...

My heart goes out to the three of you! I wish I could take away all of your pain! It really doesn't seem fair and I always find myself wondering why? I pray that Alex will have a complication free surgery and a speedy recovery. Stay strong and know that we are all here for you in spirit. Love Ya! Jenene

Al and Sus said...

It was good to see you tonight for a second, Jimmy. We check your blog often and you all are in our prayers. I (Susan) was thinking about Alex and remembered a time in physical therapy school when several people came to talk with us about what it is like to live with a disability. I remember one of the speakers was a woman who had been born with spina bifida and used a wheelchair. She was there with her son and lived such a beautiful, yet normal life. She did talk about challenges she had faced while having her disability, but also that she would not trade her life with anyone's. I don't know if that is encouraging, but I can't wait to see how Alex's life makes a beautiful difference in the world.

Jimmy said...

Thank you guys. The chili was wonderful!

Anonymous said...

HELLO! This is Auntie Lauren speaking! (Auntie to Alex that is) lol. Well just wanted to let you guys know that I am thinking of you and the baby always...And I am so thankful you put this blog so I can see how the little angel is moving along in this rough yet amazing world! I thank God everyday that she is in our life's :) although I cant see her or spend a lot of time with her she has touched me in ways you'll never know...she is such a miracle baby and she has taught me that GOD is good! Not that I didn't know that before, but she has now put any doubt out of my mind :) I truly look up to you guys... your strength is amazing and you've shown me that no matter what life may put you through be strong, have faith and most important never lose HOPE...

Alex is going to look back on this one day and be like wow what incredibly amazing parents I have!

All My Love,

Anonymous said...


Anonymous said...

How awesome it is to see how God is walking with you through the rain and He will bring the sunshine in His time. We continue to pray for you and little Alex who is a testimony to all of us of HIS AMAZING GRACE. Geppelts

Anonymous said...

Just checking in on the baby Alex news. You and Nicole are really wonderful caring parents and I know these are trying times right now, but you have tons of folks who love you that are praying for you and that precious baby girl. God has his hand on you and knows all about every thing you are going through. I love you and pray for you everytime you cross my mind. God Bless you and keep you. My love, Nita Walden - Allison (Ft.Worth)

Anonymous said...

Hang in there! God will get you through these tough times. Those song lyrics are very fitting. We will continue praying for all of you.
Ryan, Sally and Brady

genell said...

I should always read my comments before posting. my mouth out runs my brain most of the time. what I meat to say was i will say a special prayer for the 3 of you. I know Hope will be fine and someday when she becomes the first woman president you can look back on this time with happy tears.
love aunt genell

Anonymous said...

I will be praying for you guys tomorrow. There are no words for this kind of thing. May Jesus continue to hold you up and give you the strength for this little one.