TrachKids.org

On December 9th, 2011, we made our third transfer in five months. This time, to an area PICU better equipped to handle Little Bird's complex breathing requirements. The new facility is wonderful, we get to bunk in with her (one at a time, of course), in her own private room (slumber party, anyone?). For the first time since she was trach'd on October 10th, the word "hope" was mentioned. Hope, as in "Our goal is going to be to try and ween your baby off of the ventilator completely". I nearly cried hearing this. Just to know that someone, anyone, thinks this can be done! We've been given some of the worst possible news regarding her prognosis at the time of the tracheostomy. Enough to make us feel like she would never come off of the vent. And to think, a few short weeks ago, we were facing the decision of whether or not to be sent home, or too a long term care facility pretty much indefinitely. Because the NICU didn't foresee any more hope. When I look at Little Bird, I see nothing but. She shouldn't be here right now. She wasn't supposed to come as early as she did, and the weight of the world was stacked against her when she did. But she fought and never gave up. To think that anyone could give up on her angers me so much. I will never allow that. Ever. If we have to travel around the world, I will give her every ounce of hope I can find. 

Right now, she is able to handle 9 hrs of CPAP settings before tuckering out. Last night, we arrived at the start of her ninth hour. Had she not heard our voice, becoming excited and causing a monitor violation, I know she would have gone a bit further.  Her new doctors see what I see, a brave, strong, and amazing little girl who deserves every opportunity available to at least try. Even if we don't succeed the first time, we will keep trying. On the night she was born, I promised her that if she stayed with me, I'd do anything. And I will. I also promised her a puppy if she gives back that breathing tube! Looks like I might need to start checking area shelters soon <3