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.

Monday, March 15, 2010

Still waiting on the perfect heart...

Spring has sprung here in Dallas, and it was a beautiful weekend!  I took a break from the hospital to run errands and make a little vitamin D in the process.  I felt like a big city girl!  I drove here and there all by myself!  In the past when I would travel to Dallas, I was always the passenger.  Now, I am forced into the driver's seat.  It was either sink or swim this weekend.  Well, I swam!  It's amazing how we think, "Wow, I could never do this and that", but when we are faced with the inevitable, we are able to accomplish those feats, all because the Good Lord carried us through. 

Brynn is growing up before everyone's eyes.  She has lived her entire life at Children's Medical Center.  The doctors and nurses are like family to us.  JuJu can not fathom how I know who this is and who that is, but when you are here 24/7 for four months, it's kinda easy to learn who everybody is.  People tease me and tell me that they should give me a set of scrubs and put me to work.  They should make me an honorary nurse! 

Today was the day for Brynn's four month vaccinations.  It is so funny how the nurses get nervous about giving Brynn vaccinations!  To me, starting IVs, changing dressings and intubating babies would be much more nerve racking.  Brynn's a lucky little girl because what other babies get lidocaine cream on their thighs and a dose of ativan before their vaccinations?  Membership has its privileges!  Brynn did a stellar job with her vaccinations.  She probably cried about 10-15 seconds, and then she went right back to sleep. 

The doctors have no immediate plans to make any changes in Brynn's care.  The cardiac cath and Glenn procedure have been pushed back until she packs on another pound or two.  We are just taking it easy.  Ms. Kim has BIG plans for Brynn this week, but it's a secret so you'll have to wait. 

We are on DAY 55 in our journey for a new heart.  I am hoping that St. Patrick's Day will bring the best news.  It seems that holidays are known for heart transplants.  I have heard of transplants on Christmas Day, Fourth of July, Easter, New Year's Day and Valentine's Day. 

Can you believe that Brynn already has a boyfriend?!  I was just informed of this not long ago.  I haven't even met the young man!  The nurses love to set up the little boys and little girls.  They tell me that Brynn and her little sweetheart can put their broken hearts together and share a whole heart.  Awwwwww...

I am so excited about the "Hearts for Brynn" fundraiser and blood drive!  I will attend, unless Brynn gets the gift of a lifetime before then.  Thank you all for being Brynn's angels.  Every single person involved with Brynn has gone above and beyond and you will never be forgotten! 

Love to you all! 


  1. Hey Amy! I love the picture of Brynn in her sun dress. She looks beautiful and is growing so fast!

    I have been checking the blog all weekend hoping to get some news about the cath so I was happy to get the update.

    From your post it sounds like you are doing well. Hang in there girl-you are stronger than you ever knew! We are here praying for you and working on the fund raiser. It is going well.

    Kisses to Brynn- and hugs for everyone taking care of her- from me.


  2. Hi..I found Brynn's page through another page. She is beautiful! I love her new picture at the top of the blog :) I hope your prayers are answered and a heart becomes available for her soon! I think about her all the time, even though I don't know you guy. As a mom of 3 myself, I can't imagine what you are going through. I wish there was something I could do to help! I will continue to check Brynn's page though :) {{{HUGS}}} to you all!


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,