Just a Place in Time

Brilee Needs a Heart transplant

I am writing to you all in hopes you will send Brilee a Get Well soon card.

Brilee is my Great Niece; she was born November 29th 2010, at Children's Hospital in St. Louis, Missouri

She has;

 HLHS which is Hypoplastic left heart syndrome

Critical AS; bicuspid aortic valve, dilated LV with poor Function, moderate EFE of the LV, arch hypoplasia.

Intraoperative SVT, which progressed to ventricular tachycardia and ventricular fibrillation, on Digoxin.

Pre surgery large thrombi x2 noted within Left ventricle. Treated with lovenox therapy.

Tricuspid Valve regurgitation (post-operative).

 

at 10-days-old   

On December 9th Brilee had surgery; s/p Norwood reconstruction including an atrial septectomy, division of the patent ductus arteriosus, and placement of a right modified Blalock-Taussig shunt using a 4.0mm Gore-Tex graft.

 

On January 18th Brilee was life lifted to Children’s Hospital in St. Louis Missouri    

 

She has passed the entire test to be placed on the Transplant List Monday 23rd January. She is an a1 on the list.

Today they took her off the Respirators at 1pm for the 4th time this time Brilee crashed she is now stable and they have her on life support tomorrow Wednesday 26th I hear they will run test to see if she has suffered Brain Damage, If she did they will remove her the Transplant List…

 

PLEASE send Brilee get well cards… she will be 8-weeks-old January 29th 2011

 

St. Louis Children's Hospital

Brilee Marriott Rm 7

One Children's Place St. Louis, MO 63110

 

I know this will greatly lift my niece Jennifer and her Fiancé Sean spirits up..  

Thank you.

Pictures

facebook

http://www.facebook.com/album.php?id=100001591729901&aid=20978

or

myspace

http://www.myspace.com/disturbedcomputer/photos/albums/brilee/1604516#mssrc=SitesPhotos_SP_AlbumCover_ViewAlbum

 

Videos

http://www.facebook.com/video/video.php?v=135961053133618

http://www.facebook.com/video/video.php?v=133055596757497

http://www.facebook.com/video/video.php?v=132953656767691

 

Edited

A Get Well Thread For Brilee

Thank you Dr.JBHL

 


Comments (Page 2)
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on Jan 27, 2011

Update

The doctors are saying, she is doing good and by the looks she has not suffered Brain Damage but they still have to run test over the next few days...

Brilee is fighting the Life support machine  (I take that as I good Sign).

 

 

I want to thank all of Wincustomize for all the prayers and wishes THANK YOU..

 

To a moderator if this is inappropriate please just remove

 

If you would like to  Donate to the: 

Brilee Heart Foundation please make checks and Money orders out to  > Brilee Heart Foundation <  ... 

Mailing address;

10937 Richards Ct.

Lenexa, Kansas 66210

in the weeks. to come Direct deposit will be available... Thank you for your Support. Even One Dollar can help..

 

To the skinners, wallpaper, Icons Makes...

I would like to ask you  if you would Donate your time, Talent to make a Logo that I can use for the > Brilee Heart Foundation <

this is a Non-for-profit Foundation. My idea is an Heart behind the word Heart...  but please if you will do this you are more then free to come up with something else...  the logo would be used with the Name.. I also plan for the  > Brilee Heart Foundation < to move forward and start to help other parents out but I just got it started yesterday.. 

 

Thank you..

 

 

 

 

on Jan 27, 2011

Can I google a heart? My graphic skills aren't quite that good.

on Jan 27, 2011

I Can google a heart?

that's cool but I don't know if I could legally Use it.

on Jan 27, 2011

so unfair for littluns to get off to such a rough start.... she seems like a fighter.... best wishes to her...and her parents who I really feel for having to watch their little daughter so ill.... keep the faith.....  

on Jan 28, 2011

According to the website they are free clip arts. I should make sure first I guess or try to make one. Probably safer.

on Jan 28, 2011

According to the website they are free clip arts.

Duh I should have known that don't ask me what i was thinking 

 

try to make one. Probably safer.

on Jan 28, 2011

Our thoughts and prayers go with her and all the family and friends.

on Jan 28, 2011

Update

The doctors are saying, she is doing good and by the looks she has not suffered Brain Damage but they still have to run test over the next few days...

Brilee is fighting the Life support machine (I take that as I good Sign)

That's great to hear DC!

 

on Jan 28, 2011

Update Jennifer (Brilee's mom My Niece) called and told me they took Brilee off the life support... so she is doing much better..

on Jan 28, 2011

All best wishes to Brilee and family.

on Jan 28, 2011

May God Bless.

on Jan 31, 2011

off the life support...

Way to go.

on Feb 01, 2011

So good to hear that. Keep the faith going. The longer the stronger. Hearts coming.

on Feb 01, 2011

All best wishes to little Brilee and her family.With love.

on Feb 01, 2011

I hope you like it.

With

6 Pages1 2 3 4  Last