Rehab

"They tried to make me go to rehab, but I said no, no, no"

That song is cycling through my head. The doctors are JHH are pushing us to put Evie in rehab for her feeding issues at Kennedy Krieger Institute. Things have spun so far out of control for us that we keep waiting to wake up from this nightmare we are in. In my heart I think coming home and allowing Evie to be a "normal" baby would be best. But the doctors at JHH are jerks to us and don't seem to want to listen to the bigger story of Evie. It sounds like we don't have much choice and our little one will be transferred across the street to KKI on Thursday.

How long will she be there? Well, since our hospital visits get longer and longer with each admission, I'd say at least 2 weeks. Maybe months.

Jason and I are holding on my a thread. Evie has been home for 4 days this month. We are watching our baby girl grow up in a hospital bed. It breaks my heart that she has a closet of cute dresses we'll never see her wear. I can't hold her normally without worrying about pulling out her feeding tube or bothering her IV line.

No one can begin to understand the stress we've been under. I spend my day advocating for Evie and getting no where. While Jason is losing weight, I am an emotional eater and have packed on a nice gut with all of the unhealthy hospital food I've eaten and stress. I'm sure my doctors would find my glucose is high and I have a massive ulcer.

I don't know what else to say or do at this point. I keep hoping for a miracle now that Evie is 12 weeks old. Maybe she will "outgrow" this. But it looks like we'll be heading to rehab...