As of now here are the big things:
Lily has been extubated! This happened on Wednesday (May 9) and she is now on CPAP. She was on the ventilator for 5.5 weeks and is now breathing on her own for the first time in her life. She is doing well on CPAP and they have started turning down the pressure. Hopefully in a few days she will be on a nasal cannula.
She is also now off of her Fentenyl, which is a really strong narcotic. As part of the weaning process she is on scheduled morphine that they will slowly wean down. It is not good to completely discontinue fentenyl without a step down narcotic.
Lily is now on full feeds through her feeding tube. We are going to start on feeding by mouth soon. She started with occupational therapy this week and they said she is doing great. They were actually surprised at how well she is doing.
Today they are going to pull her PICC line out because she has nothing else going through it. All that she is attached to now are CPAP, her feeding tube, the leads that monitor her stats and the pulse ox!
For Mother's day she gave me big REAL baby smiles. These weren't gas-induced smiles at all.
And finally a family picture
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