Fall seems so far away...

It really stinks when what you know is coming finally decends upon you. In my gut, I knew the new discharge date included September, but to finally hear it tonight... it felt like the wind was knocked from our sail. Both my husband and I are so "done" with Ali not being home. We are desperate for this date. To just put her in her car seat, load her up and drive away from the hospital. It has been a wonderful facility and the Lord has placed people in her life to sustain her life while being there, but truly... we are so ready.

The new Pulmonologist told us tonight that the "new" date would be September. I hear this and automatically say "October". I just don't feel it right now. I truly don't even see a date and I think that is what scares me the most. We have had our training, I have been able to stay with her several days in a row, we feel confidant in our ability to care for and keep her safe... what gives? What gives? I KNOW "what gives". HE is in control. And I wouldn't want to try and take that for anything. Not even if it meant having her come home early. We have placed Alicen at the Lord's feet many, many times. For some reason, it's getting harder leaving her there.

Lord, I know you love Alicen even more than we could possibly imagine. I KNOW you have her, will take care of her and truly will do what is best for her. I can't help but feel you are preparing us to let go of her...

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.