Friday, May 20, 2011

Cardiologist meeting

There were a few changes today.  Some good news is that Braden's pneumonia is beginning to clear.  If he can get his lungs free of infection then we can move towards getting him off the ventilator.  Which means we could hug and kiss on our sweet man and he could enjoy some of the little things he loves so much.  This is not to say that this is anything more than a goal.  As we are still very much in limbo and things could change in a moment at this still very critical stage. 

Our meeting with the Cardiologist was strictly for information.  As Stephen said earlier we are both struggling with the unknown aspect of this journey.  What we do know is that Braden's heart is not functioning well and that something has caused it.   They have given us two medical terms Myocarditis and Cardiomyopathy.  Myocarditis is often caused by a virus and can be reversed or the heart can go back to normal once the virus is gone.  Currently this is the most likely diagnosis based off Braden's history and the current symptoms his body are displaying.  However, as with most things there is also chance the virus could have permanantly damaged the heart.  It is less likely but still a concern.  If Braden's heart is permanently damaged or if the heart has just for some unknown reason developed the Myocarditis or Cardiomyopathy then depending on the severity can either be treated with drugs or worse case scenario a heart transplant.   So we are still in a very terrifying and fragile position but at least we have something to HOPE and pray for... we obviously want the best outcome and feel most certainly that Braden deserves the best outcome.... So please continue to pray that Braden can fight this virus if that is what it is and that it does not cause permanent damage to his heart.  We know at a moments notice things can change and even though Braden had a good day he can still have a bad one....

They have started to treat Braden as if he has a virus and hopefully we will start seeing improvement in his heart function.  I am home tonite so I can get a decent nights rest and spend time with Grayson.  Stephen is with Braden and they are spending some quality time together.  Hopefully we will all have a peaceful night.  We appreciate everyone so much for their continued support and prayers.  Right now all the love being shown to Braden and our family has given us much needed strength ...

1 comment:

Erika @ SurvivingTriplets.com said...

Stephanie and Stephen, My thoughts are with you as you watch Braden fight so hard to overcome this. Prayers for wisdom so the doctors can swiftly identify and hopefully fully reverse any damage.

Braden's car

Braden's car

Adjusted age ticker

Lilypie 1st Birthday Ticker

Braden's new Car

Braden's new Car
1/10/08

Braden's new car

Braden's new car
1/10/08

Braden

Braden
Chick Magnet outfit 2

Braden

Braden
Chick Magnet outfit

Braden

Braden
12/13/08

Braden

Braden
12/13/08

Braden

Braden
Mr. Smiley

Braden

Braden
having a better day

Braden

Braden

Braden

Braden
11/2/08

Braden

Braden
11/2/08

Chillin on his boppy

Chillin on his boppy

Trying to take off his mitten

Trying to take off his mitten

Tummy time

Tummy time

Braden

Braden

Braden

Braden
10/3/08

Braden

Braden
Look Mommy I pulled out my nose tube again...

Braden

Braden
10/1/08

10/01/08

10/01/08

Braden

Braden
9/30/08

Braden

Braden
9/30/08

Braden in Camo

Braden in Camo

Braden

Braden
9/12/08

Braden

Braden
9/12/08

Braden

Braden
9/12/08

Braden

Braden
He loves to put his hand under his cheek. So cute...

Braden

Braden
Another photo to show how big Braden is...

Braden

Braden
Please ignore me in these photos. I just wanted you to see how big Braden has gotten.

Braden

Braden
9/10/08

Braden

Braden
8/21/08

Braden playing with his keys

Braden playing with his keys

Braden

Braden
8/17/08

Braden

Braden
8/17/08

Braden and Mommy

Braden and Mommy

Braden and Stephen

Braden and Stephen
8/10/08

Braden and Stephen

Braden and Stephen
8/11/08

Braden

Braden
8/06/08

Braden

Braden
8/6/08

Braden

Braden
8/6/08

Braden

Braden
8/6/08

Braden

Braden
After his bath

Braden

Braden
7/31/08

Braden

Braden
Tummy time

Braden

Braden
Playing in his mirror.

Braden

Braden

Braden

Braden
7/30/08

Braden

Braden
7/30/08

Braden

Braden
7/30/08 Braden checking out his wrist toy.

Braden

Braden
7/20/08 Enjoying his swing

Braden

Braden
7/18/08

Braden

Braden
7/15/08 Braden and his NG tube

Braden

Braden
7/7/08 Braden before his Dr. visit. He was happy this morning.

Braden

Braden
7/7/08 Braden looking at his Daddy taking his photo.

Braden

Braden
7/2/08

Braden

Braden
7/2/08

Braden

Braden
7/2/08 In his BeBe Pod. He's not sure if he like it just yet.

Braden

Braden
6/19/08

Braden

Braden
6/19/08

Braden

Braden
6/18/08

Braden

Braden
6/12/08

Braden

Braden
6/11/08

Braden

Braden
6/9/08

Braden

Braden

Braden

Braden

Braden's new toy

Braden's new toy

Braden and his Daddy

Braden and his Daddy

Braden

Braden
Last nite on his trach nose since we had no power. He did really well.

Braden

Braden
5/31/08

Braden & his wubbanub pacifier

Braden & his wubbanub pacifier

Braden at home

Braden at home

Braden and his tummy time Boppy

Braden and his tummy time Boppy

Braden

Braden
5/29/08

Braden

Braden
5/29/08

Braden

Braden
5/27/08 Getting set up at home.

Braden

Braden
5/27/08 in the van.

Braden

Braden
5/27/08 On our way out of the hospital

Mommy and Braden :-)

Mommy and Braden :-)

Braden and nurse Sherry

Braden and nurse Sherry

Braden's home coming

Braden's home coming
5/27/08 In his carseat. :-)

Braden

Braden
5/24/08

Braden

Braden
5/23/08

Braden

Braden
5/22/08 Braden with Nurse Patty

Braden

Braden
5/20/08

Braden

Braden
5/20/08 Braden and his nurse Stacy

Braden

Braden
5/19/08

Braden

Braden
In one of Missy's outfits. Can you see how big he is.. in his newborn clothes.

Braden

Braden
With Nurse Rachel. He is not mad at her he's got gas. :-)

Braden

Braden
5/17/08

Braden

Braden
5/17/08

Braden

Braden
5/16/08

Braden

Braden
5/16/08

Braden

Braden
5/16/08

Braden

Braden
5/16/08

Braden

Braden
5/14/08

Braden

Braden
5/14/08

Braden

Braden
5/14/08

Braden

Braden
5/14/08

Braden

Braden
5/14/08

Braden

Braden
5/14/08

Braden

Braden
5/14/08

5/11/08

5/11/08
Braden

Braden

Braden
5/11/08

Braden

Braden
5/10/08

Braden

Braden
5/10/08

Braden

Braden
5/10/08

Braden

Braden
5/10/08 4th months old today

Braden

Braden
5/7/08

Braden

Braden
5/7/08

Braden

Braden
5/7/08

Braden

Braden
5/4/08

Braden

Braden
5/4/08 Dressed up in his puppy dog attire.

Braden

Braden
5/4/08 Look at those big beautiful eyes.

Braden

Braden
5/4/08

Braden

Braden
5/4/08 Taking his bottle like a big boy.

Braden

Braden
5/4/08

Braden

Braden
5/4/08 In cousin Riley's lightning outfit.

Braden

Braden
5/3/08

Braden

Braden
5/3/08

Braden

Braden
5/3/08

Braden

Braden
5/3/08

Braden

Braden
5/3/08

Braden

Braden
5/1/08

Braden

Braden
5/1/08

Braden

Braden
5/1/08

BRADEN

BRADEN
5/1/08

BRADEN

BRADEN
5/1/08

Braden

Braden
4/30/08

Braden

Braden
4/30/08

Braden

Braden
4/29/08

Braden

Braden
4/29/08

Braden

Braden
4/28/08

Braden

Braden
4/28/08

Braden

Braden
4/26/08

Braden

Braden
4/26/08

Braden

Braden
4/26/08 Frog feet pajamas from Ashley.

Braden & Family

Braden & Family
4/26/08

Braden & Family

Braden & Family
4/26/08

Braden

Braden
4/26/08

Braden

Braden
4/26/08

Braden

Braden
4/25/08

Braden

Braden
4/25/08

Braden

Braden
4/24/08 In his bouncy seat.

Braden

Braden
4/24/08

Braden

Braden
4/22/08

Braden

Braden
4/22/08

Braden

Braden
4/22/08

Braden

Braden
4/21/08

Braden

Braden
4/21/08 Getting a break from his bottle

Braden

Braden
4/20/08

Braden

Braden
4/20/08 King Braden in his frog outfit

Braden

Braden
4/19/08

Braden

Braden
4/19/08

Braden

Braden
4/19/08

Braden

Braden
4/19/08 Taking his bottle

Braden

Braden
4/19/08 Wide awake after his feeding.

Braden

Braden
4/18/08

Braden

Braden
4/18/08

Braden

Braden
4/15/08 In his big boy bed

Braden

Braden
4/15/08

Braden

Braden
4/13/08 Look both eyes. :-)

Braden

Braden
With both eyes open 4/13/08

Braden

Braden
4/12/08

Braden

Braden
4/11/08

Braden

Braden
4/11/08

Braden

Braden
4/11/08

Braden

Braden
4/10/08

Braden

Braden
4/10/08

Braden

Braden
4/10/08

Braden

Braden
4/9/08

Braden

Braden
4/9/08

Braden

Braden
4/7/08

Braden

Braden
4/7/08 still at Vandy

Braden

Braden
4/2/08

Braden

Braden
4/2/08

Braden

Braden
4/2/08 Daddy holding Braden for the first time.

Braden

Braden
4/1/08 Dino outfit and blanket

Braden

Braden
4/1/08

Braden

Braden
Braden and Nurse Missy who sang a very lovely song to him tonite.

Braden

Braden
4/1/08

Braden

Braden
4/1/08

Braden

Braden
3/31/08

Braden

Braden
3/31/08

Braden

Braden
3/31/08

Braden

Braden
3/31/08 Braden is now 36 weeks gestational age. He will be 3 months old on April 10th.

Braden

Braden
3/31/08

Braden

Braden
3/31/08 Sleeping so peacefully

Braden

Braden
3/31/08 Momma holding Braden

Braden

Braden
3/31/08 He's telling them to be quiet or he's thinking. You decide.

Braden

Braden
3/31/08 Patty pics

Braden

Braden
3/28/08 Such a cutie :-)

Braden

Braden
3/28/08 Braden's alligator apparel

Braden

Braden
3/28/08 The Green bean bag alien from Roswell.

Braden

Braden
3/25/08

Braden

Braden
3/25/08

Braden

Braden
3/25/08

Braden

Braden
3/25/08

Braden

Braden
3/24/08

FEEDJIT Live Traffic Feed

Braden

Braden
3/24/08

Braden

Braden
3/24/08

Braden in Camo

Braden in Camo
3/23/08

Braden in Camo

Braden in Camo
3/23/08

Braden

Braden
3/23/08

Braden

Braden
3/23/08

Braden

Braden
3/20/08 Look how big he's getting.

Braden's new isolette

Braden's new isolette
3/18/08

Braden's new Isolette

Braden's new Isolette
3/18/08

Braden

Braden
3/16/08

Braden

Braden
3/16/08

Braden

Braden
3/16/08 Photo from last nite while Mommy held Braden

Braden

Braden
3/15/08

Braden

Braden
3/15/08

Braden

Braden
3/14/08

Braden

Braden
3/14/08

Braden

Braden
3/14/08

Braden

Braden
3/14/08 This duck is not as big as it looks.

Braden

Braden
3/14/08

Braden

Braden
3/12/08

Braden

Braden
3/12/08

Braden

Braden
3/11/08 New bedding..

Braden

Braden
3/11/08 Both eyes open. Taken with the lights down and no flash. He won't open them otherwise.

Braden

Braden
3/11/08

Braden

Braden
3/11/08 Doesn't he look bigger?

Braden

Braden
3/11/08

Braden

Braden
3/10/08 2 months old today. :-)

Braden

Braden
3/9/08

Braden

Braden
3/9/08

Braden

Braden
3/9/08

Family photo

Family photo
3/7/08

Braden

Braden
3/7/08 Photo by Aunt Paula

Braden

Braden
3/7/08 Our first family photo

Braden

Braden
3/7/08 Braden's tooth. Photo courtesy of Nurse Patti

Braden

Braden
3/7/08

Braden

Braden
3/6/08

Braden

Braden
3/6/08

Braden

Braden
3/6/08

Braden

Braden
3/5/08

Braden

Braden
3/5/08 Photo by Aunt Paula

Braden

Braden
3/3/08 With his mittens and hat to warm him up after his bath.

Braden

Braden
3/3/08

Braden

Braden
3/3/08

Braden

Braden
3/3/08

Braden

Braden
3/3/08

Braden

Braden
2/29/08

Braden

Braden
2/29/08

Braden

Braden
2/29/08

Braden

Braden
2/29/08

Braden

Braden
2/28/08

Braden

Braden
2/27/08

Braden

Braden
2/27/08

Braden

Braden
2/27/08

Braden

Braden
2/26/08

Braden

Braden
2/26/08

Braden

Braden
2/05/08

Braden

Braden
2/25/08

Braden

Braden
2/22/08 Evening visit

Braden

Braden
2/22/08 Daddy's a little better at taking my photo.

Braden

Braden
2/22/08 This is what happens when Mommy forgets to turn off the flash.

Braden

Braden
2/18/08 You can see he is still very little even though he's reached 2 lbs.

Braden

Braden
2/18/08 Look zero tubes :-)

Braden

Braden
2/18/08

Braden

Braden
2/16/08 Is that a smile on his little face:-)

Braden

Braden
2/16/08

Braden

Braden
2/16/08

Braden

Braden
2/16/08

Braden

Braden
2/16/08 Still off the vent what a trooper.

Braden

Braden
2/14/08

Braden

Braden
2/14/08

Braden

Braden
2/12/08

Braden

Braden
2/11/08

Braden

Braden
2/11/08 Braden on his camo and frogs blanket. Very Cute.

Braden

Braden
2/11/08

Braden

Braden
2/11/08

Braden

Braden
2/7/08

Braden

Braden
2/6/08

Braden

Braden
On his own blue bunny blanket given to him by Judy G.. :-)

Braden

Braden
2/6/08 with his purple passy

Braden

Braden
2-4-08 Sometimes it's just too hard to get a non blurry shot. He is so small. But, this is a picture without tape on his chin.

Braden

Braden
2/2/08

Braden

Braden
2/2/08

Braden

Braden

Braden

Braden

Braden

Braden
2-1-08

Braden

Braden
Our little superman 2-1-08

Braden

Braden
1-29-08

Braden's new hat

Braden's new hat
1/29/08

Braden

Braden
1-28-08

Braden

Braden
1-28-08

Braden

Braden
1-25-08

Braden

Braden
1-25-08

Braden

Braden
1-21-08 All I want to do is sleep.

Kaleigh

Kaleigh
1-21-08 Both eyes open and a non blurry picture. Thank you Daddy.

Kaleigh

Kaleigh
1-21-08 with both eyes open. Mommy had a hard time with the camera so my apologies for the blurred photo.

Braden

Braden
1/20/08 Little Kaleigh's photo last nite didn't come out. They had her in the dark so it was difficult to get a good shot. :-(

Braden John

Braden John
1-19-08 Still sleeping away and really tired but doing very well.

Kaleigh Grace

Kaleigh Grace
1-19-08 She doesn't look so comfortable but they had just flipped her back on her back. She would rather be on her belly.

Kaleigh

Kaleigh
1-19-08 Good pic of her little face.

Braden

Braden
1-19-08 resting peacefully from a hard day of breathing on his own.

Braden

Braden
1-18-08 with his purple passy

Kaleigh

Kaleigh
1-18-08 evening

Kaleigh 1-18-08

Kaleigh 1-18-08
Our little hero has showed us that she is a fighter.

Braden

Braden
1-18-08 first day off his ventilator. :-)

Kaleigh 1-17-08

Kaleigh 1-17-08
Resting so she can get stronger.

Braden 1-17-08

Braden 1-17-08
Has his lamp off today. So we can see his cute little face.

Kaleigh

Kaleigh
Laying on her pink gingham blanket. They just changed out that morning.

Braden

Braden
That's Mommy's hand on Braden's little head. In an effort to calm him.

Kaleigh

Kaleigh
They had Kaleigh on her side today. What a large diaper she has on.

Braden

Braden
Loves to sleep on his tummy. Kaleigh likes it too.

Braden

Braden
1/14/08 Stretched out and relaxed

Kaleigh

Kaleigh
1/14/08 crinkling her forhead

kaleigh grace

kaleigh grace
1/12/08

Braden John

Braden John
1/12/08

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This is the story of an amazing set of twins that were born 16 weeks to soon and their little brother Grayson. Kaleigh Grace who lived an amazing 13 days and we miss daily. Braden our super hero who is now 4. This is our journey in parenting with challenges above and beyond the norm.