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.

Saturday, June 19, 2010

Brynn...5 weeks post-transplant!!

Wow!  What a month it has been!  We have been very busy with clinic visits, therapy sessions, medications, feedings, diaper changes and bath time, but through it all we have enjoyed every minute of it because we are together!

Brynn is doing amazingly well!  At each clinic visit, she passes each test with flying colors.  The transplant team is so pleased with her.  In her first week out of the hospital she learned to do so many things.  She learned to shake her head "no".  Hmmm...wonder where she learned that?  Heaven knows no one we've ever encountered has ever dared to tell Miss Brynn "no"!  I guess it's just part of her diva DNA...if she doesn't like it, she ain't gonna do it!  She laughs out loud now...full on belly laugh!  The first time I made her laugh after her transplant was so cute, but just as soon as she laughed it turned into a whimper because bless her heart (literally) her little chest was still tender.  If I say something funny like "booty butt" or make her stuffed animals dance and sing for her she gets so tickled.  She is the happiest baby because the only time she cries is when she is sleepy.  I know the ICU nurses will appreciate this one...she also starts to fuss when she discovers no one is looking at her, and as soon as I come into view and talk to her she instantly starts smiling.  Rotten!!

She rolls from her back to both sides, and is trying so hard to roll to her tummy, but that arm just gets in the way!  We got the OK to put her on her tummy last week.  She puts up with it for about two minutes and then she starts with the diva-esque tantrum.  Brynn is working very hard at taking her bottle.  We have a way to go before we can tell the feeding tube buh-bye, but "slow and steady wins the race".  Amen!  I have, MYSELF, replaced her feeding tube 5 times since she has left the hospital.  Each placement has been perfect I might add! :) 

Since Brynn has left the hospital, she has been shopping...a lot...let's see, Northpark, Galleria, grocery store, Allen outlet mall, Pottery Barn Baby, Babies-R-Us and several trips to Walgreen's or CVS.  Don't be alarmed at the thought of her being out-and-about so much because Brynn wouldn't be caught without her mask on! 

She enjoys bath time nowadays.  If I accidentally get a little soap in her eyes, there is no meltdown on her part, and no valium or ativan is necessary to diffuse the situation.  Oh, no...Brynn is not on the hard stuff anymore! 

Brynn loves her big brother Brady, and she loves for him to hold her.  He is such a BIG help to me.  When I need to wash my hands or grab something in another room, he stays right with her until I come back.  The other day he yelled that her feeding tube was coming out.  I quickly pushed it back in, and Brady said, "Now, what do I get for saving her life?". 

This is another one that the ICU nurses will remember.  Brynn still loves to look at herself in the mirror.  Um hmm...a full length mirror now.  I'll hold her and stand in front of the mirror so she can look at herself, and as I turn to walk away she turns her head to get one last look! 

I'm sorry the update has been so long in the making, but our schedule is non-stop.  Please keep checking back on Brynn's blog because I will try to do better with updates! 

Love to you all,

Scott, Amy, Brady & Brynn

5 comments:

  1. I am SOOOOOOO happy for you guys!!!! Don't you EVER apologize for a long update. We want to know all about how Miss Brynn is doing! Congratulations everyone! We LOVE you Brynn!! XOXO

    ReplyDelete
  2. I love this new update!! I check in everyday to see...I know your days have been non-stop. I can't wait until I get there with you, Brady and Brynn!!
    Love you all!!!
    Ma-Ma

    ReplyDelete
  3. So glad to hear you are getting good reports, and I hope that means a quicker trip home to be with Dad! It was great to see y'all at clinic on Monday. Brynn looked GREAT! Email me!! We can do a playdate before y'all go home. God bless. Praying for you daily!

    ReplyDelete
  4. That is so awesome!! I can just imagine her in front of a full-length mirror!! I bet that is hilarious. We miss you guys so much but couldn't be happier for you. Sounds like she is becoming a Dallas diva already!

    ReplyDelete
  5. Katie (ICU Nights)August 2, 2010 at 4:06 AM

    Ooooh goodness y'all! I'm so excited for you guys! Any time I see anyone from the transplant team, I ask about Brynny Boo, and I always here she's doing just great! I'm so very proud of her for putting her best fighting face on and keeping her new heart healthy and strong!

    I could've predicted that she would still like the mirror and company! Haha, she just likes being looked at, so maybe she'll be a model or movie star walking the red carpet one day! :)

    If you guys have new pictures you want to share, I would love to see how wonderful she's doing (since working Nights doesn't coincide with her appts...and because I hear y'all are going home!?! OMG that's wonderful!!). katiemike3@sbcglobal.net is my email.

    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