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.

Tuesday, March 2, 2010

Brynn has been a good little girl today.  Well, almost.  We are all aware of her DIVA status, but sometimes she just feels the need to remind us of who is really running the show!  To begin with, she pulled out her feeding tube, which required the placement of another and then an x-ray to make sure it was in the right place.  Oh, by the way, that was probably her 112th x-ray that she has had in her short little life.  Later, I went to eat supper, and sure enough she threw a hissy fit, which required morphine and ativan to calm her down.  That's why I'm now able to post on her blog!  Ahhhhh, dreamland for Miss Brynn! 
It seems so much around here revolves around numbers...heart rate, blood pressure, O2 sat, toe temp, respirations, NEARS, weight, and on and on.  So that got me to thinking, what's in a number?  How about 42?  That's the number of days Brynn has been on the waiting list for a heart transplant.  How about 110?  That's the number of days Brynn has been a patient at Children's Medical Center.  How about 535,900?  That's about the average number of dollars it costs for each month Brynn is in ICU.  How about 4?  That's the number of chambers Brynn's heart should have had, but she was only born with 3.  I'm sorry Brynn that I failed you, I'm so sorry my pretty, pretty princess.  Unknown...that's how many tears I have cried, but only God knows how many. 
I will end on a happy note!  Brynn likes to sleep until 11:00 every morning!  She loves me to sing the alphabet song to her.  Her favorite toy is a flower rattle we named Petunia.  Brynn will start to smile and coo everytime she sees it!  Brynn also likes to watch TV!  Did I mention that she loves to be held???  ;)

Good night all!  Love, Brynn & Amy


  1. Amy, this was a very good post. I didn't realize that numbers were such an important part of Brynn's life.
    I know that God is listening to our prayers and He sees what's going on down here.
    My Faith will never wavier, it's very hard sometimes, but, I know He's in control. God Bless you and my precious, precious Brynn whom I love so deeply.
    Love, Mama

  2. Amy, I know deep down inside you know this but you have not failed Brynn in any kind of way. She is so lucky to have such a nurturing, caring, loving mama!! It's not fair that she is having to go through this. It's not fair that you are having to go through this, or Scott, or Brady or anyone. We don't know the answers but we know who does. We don't know the plan, but we know the planner. My prayer is that you will be able to focus on that. God hasn't forgotten you. He hasn't forsaken you and He definitely isn't punishing you. He is right there with you, He loves you and He loves Brynn and He has a plan for all of this. I love you so much and I'm here day or night if you need me.
    Love, Christy


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,