Eyes looking up to Heaven

Eyes looking up to Heaven
Dear God, I'm so tiny, but I know you can hear me, please send me a heart soon so that I can be the little sister, daughter and granddaughter that I know I am destined to be!

Brynn ... a reason to hope

Hi, my name is Brynn Madeleine Lewis. I was born on November 12th to the best parents a girl could have, Scott and Amy Lewis. I also have a wonderful family too, my big brother, Brady Lewis is awesome, he attends Wylie Elementary school in Henderson, TX. My grandparents are Sharon Reeves Collins, Judy Ann Lewis, and Johnny and Judy Lee Lewis. God has blessed me with so many supportive friends and family and that is extra special at this time, because I have a big battle ahead of me. I was born with a congenital heart defect, and despite all the awesome efforts of my doctors, I need a heart transplant ASAP. As you can imagine all the doctors bills, hospital, tests and procedures, can add up to a large amount of money, quickly. My mommy is not able to return to work, and is staying here with me, taking good care of me, with the help of all the terrific nurses and doctors. Once I receive my new heart, we will have to live in Dallas, close to the hospital for at least 3 months, so I can get the proper care and ensure everything goes well. If you would like to help me out in any way, I would forever be appreciative and thankful, and so would Mommy and Daddy, an account has been set up for me to collect any donation you would like to give. Please continue to pray for me and my family, we know that God will take good care of me and He will provide.

Sunday, March 7, 2010

I looked up the meaning of the name "Brynn".  It means "hill".   You have probably heard the poem, "Monday's child is fair of face, Tuesday's child is full of grace...".  I couldn't remember what Thursday's child was, so I looked it up since Brynn was born on a Thursday, and it says, "Thursday's child has far to go".  Isn't that the truth?  Brynn does have far to go, and it will always be an uphill battle, but I'm prepared to be right by her side, holding her tiny hand throughout her journey.   Medically, there is nothing I can do for her while she is in the hospital, but I want her to know that her Mommy never left her side, even when times were so scary that I wanted to close my eyes so tight, cover my ears and cower in the corner.  I want her to know that I was brave for her and stood there and prayed and never left the room so she wouldn't have to go it alone. 

As I lie in bed at night I can feel my heart beating, and I feel so guilty, so unworthy of having such a strong, healthy heart.  I wish I could trade hearts with Brynn.  I walk through the ICU and I see all the precious children in their beds, many on ventilators, many unable to get out of bed, and I feel so guilty for being able to walk around, to eat, and to say "I'm healthy".  Brynn has taken a piece of just about everyone's heart that has seen her or heard her story.  I wish I could take all of those pieces and sew them together and give her a new heart.  No more waiting.  She would have enough pieces to make many hearts I'm sure. 

Brynn is supposed to have another heart cath around the 15th of March to evaluate her readiness to have the Glenn procedure.  After her heart cath, the surgeons will decide if Brynn's little heart can withstand this operation.  I pray that she gets her perfect heart before then, so that she won't have to undergo this operation.  This is the second operation that she was supposed to go through originally.  It will be a necessary surgery at some point because she is outgrowing her B-T shunt.  The purpose of the Glenn operation is to remove the B-T shunt and redirect venous blood from her head and upper limbs to her lungs, thereby bypassing her tiny, non-functioning right ventricle.  

Brynn has been placed on more medications to keep her calm and allow her little heart to rest.  She is on clonidine, morphine, ativan and valium.  It is so sad to see her so groggy and sleepy most of the time, but I know that this is not forever and that it allows her little heart to rest.  She is such a fighter because when she does wake up, she insists on coo-ing and chatting up anyone around her! 

Someday, Brynn, Mommy will carry you out of this hospital for good, and I won't be afraid anymore to make you mad by giving you a bath or panic when you cry out of the fear that you could die. 

Scott and I received many cards of encouragement from Sally Curbo's classes at Northside.  I was in tears after reading the first card, and I continued crying up until I finished reading the last one.  What precious children!  I wish their parents could read the sweet things their children wrote to us.  I will treasure those cards as long as I live.  To the mothers and fathers of these children, you are truly blessed!  Thank you to Mrs. Curbo and these children for doing this for us.  The tears we shed were happy tears. 

I want to dedicate this post to my uncle, Dusty.  He would have been 62 years old today.  He had Down's Syndrome, and passed away just one month before Brady was born.  He always prided himself on how many nieces and nephews he had!  He would have loved Brady and Brynn so much!  I love you Dusty! 


  1. Hi! This is Ashleigh...we met "ironically" when you called in at BCBS! I was reading your post and it reminded me of the song, The Climb, by Miley Cyrus...if you havn't heard it here's the lyrics...

    I can almost see it
    That dream I am dreaming
    But there's a voice inside my head saying
    "You'll never reach it"

    Every step I'm taking
    Every move I make feels
    Lost with no direction
    My faith is shaking

    But I gotta keep trying
    Gotta keep my head held high

    There's always gonna be another mountain
    I'm always gonna wanna make it move
    Always gonna be a uphill battle
    Sometimes I'm gonna have to lose

    Ain't about how fast I get there
    Ain't about what's waiting on the other side
    It's the climb

    The struggles I'm facing
    The chances I'm taking
    Sometimes might knock me down
    But no, I'm not breaking

    I may not know it
    But these are the moments that
    I'm gonna remember most, yeah
    Just gotta keep going

    And I, I got to be strong
    Just keep pushing on

    'Cause there's always gonna be another mountain
    I'm always gonna wanna make it move
    Always gonna be a uphill battle
    Sometimes I'm gonna have to lose

    Ain't about how fast I get there
    Ain't about what's waiting on the other side
    It's the climb, yeah!

    There's always gonna be another mountain
    I'm always gonna wanna make it move
    Always gonna be an uphill battle
    Somebody's gonna have to lose

    Ain't about how fast I get there
    Ain't about what's waiting on the other side
    It's the climb, yeah!

    Keep on moving, keep climbing
    Keep the faith, baby
    It's all about, it's all about the climb
    Keep the faith, keep your faith, whoa

    Logan was born on a Thursday too...and it was climb...one that we knew we could only take one day at a time...Now, our hospital stay was nothing like Brynn's...but it was still very very difficult. Keep your faith, Keep your faith held high! And remember, the furthest you can fall, is right in the palm of God's hands!! We are praying for your little one, and crossing our fingers for a lucky st. paddy's day for ya!! ::hugs::


  2. Thank you Ashleigh! I think it was God that allowed us to cross paths. It's His way of saying, "See Amy, I'm still here with you and Brynn". I have always loved this song by Miley. Thank you for posting the lyrics!


February 15, 2009

Hello everyone! Well, Valentine's Day has come and gone...we were hoping Brynn would have received a new heart on that day. It wasn't meant to be, but we won't get discouraged!
Brynn has had a busy day today. I discovered that there might be a problem with Brynn's feeding tube. Sure enough, the x-ray showed that it had migrated out of her tummy. That meant she would need it to be taken out and replaced. She did get very upset and her heart rate went up, but she calmed down and I just laid her down for a long night's rest!
If Brynn hasn't received a new heart within the next month, the doctors want to do another cardiac catheterization and plan for the Glenn procedure. It is a surgery to remove the B-T shunt, which she will ultimately outgrow. It will also upgrade her condition to a more stable one.
She is just over 11 pounds (!) and the doctors and nurses are so excited. One of her doctors said that her thighs are really filling out, but that she hasn't reached thunder thigh status quite yet!
I'm going to try to post some pictures, so stay tuned!

Love to you all,