Wearing down...

So much to catch up on and yet, I don't have the energy. Ali has been up and down with her trach. She is great and then has major setbacks. Already in the past 3 weeks she has coded twice. Just yesterday it was a full on, chest compressions code. The crazy thing? She is HEALTHY! She is not sick, does not have "gunk" in her lungs. Just has a really, REALLY bad airway that does not agree with her tracheostomy. I KNOW the Lord has her. I trust this with everything in me but dealing with it and being her Mom... seperating myself from her is becoming increasingly difficult. We just SO want her home. We are SO READY for her to be home. Sometimes it is so overwhelming and lonely. Sometimes I just want to fall apart and yet, it's so not worth the energy. My husband and I support each other. If one of us breaks, the other has to pick up the pieces. That's fine in theory but if we broke every time she had a bad moment, we would NOT be helping anything... or anyone. It just sucks. I want my baby home. I want to simply pick her up and hold her. To be free of her tubes and be able to breathe on her own. No one knows if she will ever be able to or simply make it home... After 9 months... I'm wearing down.