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.

Thursday, March 25, 2010

Today has been a busy day for our little Brynn.  It's never been the typical day a 4 month old would have.  Brynn had two ECHOs today.  An ECHO is an ultrasound of the heart.  While it's not invasive, it's not fun to have a sensor moving over your little chest for 30-45 minutes.  Brynn really hates it towards the end when she has to tilt her head back while a sensor is passed over her chest near her throat to get a good image of her aortic arch.  The doctors were worried that Brynn had developed another obstruction in her arch.  Thanks to the Lord, she hasn't.  I'm still awaiting the results of the first ECHO to see if her heart function has changed.  Hopefully, it has gotten a little better or stayed the same. 

Last night, Brynn showed the doctors that she didn't need that pesky nasal cannula.  Well, that was short lived because during rounds this morning the doctor ordered the cannula to be replaced.  Even though I was so happy to have one little chubby cheek free to kiss and gently pinch for a while, I will admit that her heart rate has gone down since getting the extra support from the oxygen.  It just goes to show you that the simple task of breathing takes its toll on Brynn. 

We also learned today that Brynn will have to weigh 8 kilograms before she can be considered for the Glenn surgery.  That means that she will need to gain about three more pounds.  There is also other criteria that she will have to meet in order to have this operation, so the surgery may or may not ever happen.  I just put my trust in God that He will reveal to the doctors what should be done.  I think He already has because the doctors just yesterday agreed that she could have the surgery when she was 6.5 kilograms.  She was 6.6 kilograms as of this weekend.  I think God is stalling the doctors because He has other plans. 

God is good...yes, he is!  We have received several offers from people wanting to organize fundraisers in honor of Brynn.  Unbelieveable, but that is God working through people. 

I'm not finished with what I want to tell you, but I need to go.  Brynn is wide awake and we need to play!  She hit another BIG milestone today...she rolled from her back to her left side! 

Good night and God Bless!


  1. Congrats on Brynn's milestone! I hope whatever is in store for precious Brynn happens soon. Thanks for the update :)

  2. I just saw the piece about Brynn on CNN. I wish you all the very best and I hope her surgery comes soon. Is there anywhere online that we can contribute to your fundraiser?

  3. I saw your story on TV...I will try to help in any way I can. I also have a daughter named Brynn - it's such a unique name, and so darn cute! I will send lots of prayers your way.

  4. Brynn is always so happy because she has been surrounded by loving and caring Drs., nurses,Mommy, Daddy, Brady and all of her family and friends. She doesn't know life any other way except the wires, sticks, oxygen tubes, feeding tubes and etc. Someday soon she will have all these things taken away and she will have a new heart and she won't remember any of the pain she's had to endure in her early little life. This is all she knows, but, she can get through this with God holding her in His mighty hands!! That's why she can laugh with her little mouth wide open!! Just remember how it feels to open your mouth and laugh....this is a healing process.
    Thank you, God for sending Brynn to us, especially me, her Grand-Mother, Ma-Ma.
    I love you so very much....there's no way to measure my love for you.
    God be with you tonight.
    Love, Ma-Ma

  5. Amy, it was great to see you and your family Saturday! I am praying for you daily and know the miracle is on its way.
    Kathy Sullivan


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,