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.

Wednesday, February 24, 2010

Please Dear God, send Brynn a heart tonight

Everyone has been bragging about how good Brynn looks despite her condition.  The doctors and nurses really are amazed.  Unfortunately, the harsh reality of her broken heart was brought to our attention once again tonight.  Looks can be deceiving.  She has been a happy little girl all day.  I bathed her and washed her hair and put on a cute outfit this morning.  She even took a ride in a big red wagon this afternoon twice around the unit.  Our friend videotaped the first lap and even provided commentary!  I'm going to try to download this onto her FaceBook page...Hearts for Brynn.  Well, despite being happy all day she has had an elevated heart rate.  This makes the doctors uneasy.  I have been watching the monitor all day, and I too have had an uneasy feeling.  It all reached a boiling point about 8:00 tonight.  Blood was drawn, an x-ray taken and she had another echo performed.   Brynn was given morphine and ativan to calm her, but her heart rate reached 217 beats per minute.  I was so frightened, I almost screamed out to everyone to, "leave her alone!"  Her blood work and x-ray came back normal, but the echo did not carry good news.  It showed that her heart function was worse.  The doctor said that her little heart is tired.  You can't imagine the work load that tiny heart is taking on!  Whenever she starts to cry, I immediately grab the binky and sweeties and start holding her and rocking her.  I have literally worn out a rocking chair!  I'm serious!  It has started making popping noises!  My knees will probably need replacing soon!  That's OK Brynn, Mommy doesn't mind.  :)  In the end, her heart rate has come down and she is sleeping peacefully, but the doctors told me that if her heart rate continues to rise then she will need to be intubated.  She has been intubated before, and it's not fun for her and it makes me so sad.  She can't make any sounds, and I can't hold her.  I can't bear to think of her not being able to be held!  The bottom line is, she needs a heart, and she needs it soon.  Please continue to pray for this miracle to happen.  I know God will provide her with a heart, but I want to see her go into surgery smiling. 

Love to you all,

Amy

2 comments:

  1. I love you and I am continuing to pray!! Hang in there Amy!! Love, Christy

    Psalm 91 (The Message)

    You who sit down in the High God's presence, spend the night in Shaddai's shadow, Say this: "God, you're my refuge. I trust in you and I'm safe!"
    That's right—he rescues you from hidden traps, shields you from deadly hazards.
    His huge outstretched arms protect you—under them you're perfectly safe; his arms fend off all harm.
    Fear nothing—not wild wolves in the night, not flying arrows in the day, Not disease that prowls through the darkness, not disaster that erupts at high noon. Even though others succumb all around, drop like flies right and left, no harm will even graze you. You'll stand untouched, watch it all from a distance,
    watch the wicked turn into corpses. Yes, cause God's your refuge, the High God your very own home, Evil can't get close to you, harm can't get through the door. He ordered his angels to guard you wherever you go. If you stumble, they'll catch you; their job is to keep you from falling. You'll walk unharmed among lions and snakes, and kick young lions and serpents from the path. "If you'll hold on to me for dear life," says God, "I'll get you out of any trouble. I'll give you the best of care if you'll only get to know and trust me. Call me and I'll answer, be at your side in bad times;
    I'll rescue you, then throw you a party. I'll give you a long life, give you a long drink of salvation!"

    ReplyDelete

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,

Amy