Road Trips...

Today is day fifty three. Fifty three days since Little Bird arrived ahead of her time. Each day, we wake up with her on our minds, and hope that the hours in front of us will bring us that much closer to her homecoming. To the end of this nightmare. The last fourteen days have done nothing if not push us farther away from that finish line. 

This afternoon, and after several conversations with one of the doctors on her team, we've come to the realization that it's in Little Bird's best interest to transfer her to a facility better equipped to handle her medical needs. Late last night, she managed to pull her breathing tube out again. The second time in less than a week. She was immediately reintubated, but during the procedure, her doctor noticed something suspicious. Her airway is unusually constricted, to the point where she required the smallest breathing tube available. She has developed bronchopulmonary dysplasia, this we've known. But what they are seeing now seems to be subglottic stenosis. Her airway is severely constricted. It's what they believe is causing her inability to be successfully weened off of the ventilator. She needs an endoscopy in order to definitively diagnose her condition, but the hospital does not have the means to perform that on a baby her size. 

We were given the option to have her transferred to one of the nation's best children's hospitals, with the hope that they might be able to help her. After conferring with the specialists there, we have agreed that this is the best place for Little Bird. Though, even they will not attempt to scope a neonate this small, they are going to give her the opportunity to grow a bit more, and they'll take it from there. 

I can't lie and say I'm not absofuckinglutely terrified for her. The transport itself scares the living shit out of me. And what's worse is knowing that I can not be with her for it. After only three days into the new school year, the older kids brought home a bug, and passed it on. I'm sick enough to say I can't take the risk of being with her right now. I simply can not be next to her and not physically touch her. I just can't. 

She completed her course of antibiotics to treat the NEC, and resumed her feeds this afternoon. She is pretty damned happy to be eating again. It sounds dumb, but it's a comfort for me to know that at the very least, she's comfortable. They're also sedating her to keep her from re-extubating herself, and I'm grateful for that, too. Still, it feels like day one all over again. Like we're back at the top of that first drop on the roller coaster from hell. I don't care to be famous. I don't want a million dollars. I just want Little Bird to come home. I want her to be healthy. I want her to be happy. If God would just give it all to me, I'd take it. Let me have it. I'll do it for her. I'll go days without food. I'll put up with the needles, with the fear, with the pain. He can have my health instead. Just let her have a chance. 


 
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