Kyle's NICU Story in Pictures

Friday, February 8, 2008

MRI Today - Kelly

first let me say that kyle had the most adorable awake time today!  A friend that I met in the NICU came up to hang out today.  We spent about an hour just watching kyle b/c he had the most amazing awake time!  He was unswaddled, in his little outfit, just kicking, moving his arms around and looking at his toys.  we got out different toys and he enjoyed each one.  Really - he laid there about an hour just looking and playing and listening to us visit.  It was so much fun!

then we got ready to go to the MRI.  It was harder than I thought it would be.  the last time I saw him in that transport box was not a good day - it was the day he was born and he was in plastic wrap headed to the medical center.  it was hard to watch them put him into the mri - all the stuff they had to do to help him lay still and calm and not hear the machine.  it was REALLY hard as I started seeing brain scans pop up all over the screen.  I didn't realize it would affect me.  but the fear that I felt the day we did the brain ultrasound came right back.  God did send Leah with me - she was the transport nurse that took kyle down to the MRI.  She was great - positive, honest, caring, protective, detailed and AMAZING at her job.  not to mention she is a mother of 2 also!  she was amazing.

I was so unsettled.  We will not have results until tuesday however he did say he would comment a bit just on what he saw.  Kyle's ventricles are enlarged still.  The right one looks pretty good but the left on still has blood in it.  This is not a problem, it will go away.  The problem is the damage it can leave when it goes away.  Kyle's right ventricle looks good so far.  His left one is still enlarged.  Kyle has lost some of his white matter (brain matter) around this area.  He is showing premature signals (this goes along with the damaged brain matter).  What this means - of course they don't know.  John and I are used to this buy now.  They did give us some bits of info about cognitive and motor developmental delays ranging from mild to medium in severity.  We will know more on Tuesday.

I believe God will heal kyle.  I believe what I feel is the promise he made to me or the hope he put in me for kyle.  I believe the vision he gave my friend.  I still don't understand why he delays or I think maybe i just think he delays.  I still don't understand why he doesn't dramatically do what I ask b/c I think it would be great display of his healing power.  There is still this fear, this underlying worry, unbelief maybe.

A friend of mine tonight talked to me about that being the whisper - the one underneath all my belief that tries to convince me of a lie.  from evil.  she reminded me of the vision that God gave to her and to me when Kyle was born.  My hearts desire is to see him run and play in the backyard with his brothers.  what joy there will be in my heart the day I see that.  the day the whisper goes away.  I was reading a woman's blog tonight about her son jack.  she talks about a feeling in your gut.  no matter what you are doing - crying, laughing, playing, singing - whatever - a feeling that never goes away - I know one day it will.  what joy.

I promise to post more when I know more.  kyle was pretty tired out after his big field trip!  He had a great day eating today and they moved him to add lib which is bottle feeding as much as he wants and as many times out of the 8 as he wants!

Maybe he should be a piglet instead of a lion!

5 comments:

Adam & Andrew said...

That sounds similar to A's recent MRI but on the opposite side. Praying for FULL healing. But it sure sounds like Kyle is doing AMAZING! To be on ad lib feeds and 1/4 liter O2 is awesome! Both my boys' came home on 1/4 L and one was off in 3 weeks the other in 6. O2 at home is not your ideal homecoming but it was more than worth it just to have them HOME!! Praying you will be home together real soon!

Anonymous said...

Wow, God is working in such amazing ways. I know it may not always be to the extent we want right now, but just seeing His hand at work is so incredible.
We will continue to pray that God will place His hedge of protection around Kyle and the family....for physical, emotional and spiritual protection. May He bind the evil one's influence and hush the lies he whispers. May your heart and mind be encouraged and your hopes fulfilled. Rest in Him and the knowledge of His love for you and Kyle.
We love you guys! Much love, many prayers, and many blessings, Adriane Hunter

Anonymous said...

Kyle is going to be perfect when he go home from the hospital... no doubt in my mind!!

Still praying, still believing and still expecting miracles! (THANK YOU LORD!!)

CANDY HUMBER

Anonymous said...

I just wanted to say "good job" for pumping for 3 long months. It was a true miracle that you were able to provide enough milk for those first months of Kyle's life (when he needed it the most). Many moms who have 23 weekers try and try to get a milk supply and are unsuccessful.
Any mom who has pumped around the clock for any stretch of time applauds your commitment & effort :)
Happy to hear Kyle is quickly turning into a cuddly, bundle of boyness,
Wyana Eddleman

Anonymous said...

PTL WHOOP WOHOO

Charlotte Efird

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!