It shouldn't be like this.

Coming home is so bitter sweet. I'm glad we're finally home and out of the hospital. But, now the reality of the situation has hit me full force.

Everything has changed.

Everything.

I'm so paranoid about everything. Is she eating enough? for long enough? Is her diaper too wet? Is she sleeping too much? It's like having a newborn all over again. She's even back to sleeping beside my bed. Partly because I have to keep up with feeding her every 2-2.5 hours to keep her blood sugar up. The other part is that we're so scared she'll have another seizure in the middle of the night and we won't know! I don't like to think about how long she'd had that seizure before I found her that night...

And on top of worrying, I'm having to deal with so many medications. Levothyroxine for her thyroid at 9am, Hydrocortisone 3 times a day - 8 hours apart, Somatropin injection at night time and then 3 oz of water throughout the day to keep her sodium down and keep the diabetes insipidus at bay for the time being. On top of the every 2 hour nursings.

And I sorta messed up her shot this evening. She moved while I was injecting it and some came out. I had to call the pharmacy and check with them. They told me not to worry about it but how can you not? That stuff is so expensive and it's supposed to keep her blood sugar up.

And then my mom asked me if I was okay...good lord. No. I'm not. I'm holding onto a thread. I don't know whether to be angry, upset, or sad...so I guess I'm all of the above combined with way overwhelmed.

And all I can think is, I shouldn't have to be worrying about things like this. I shouldn't have to stress over giving my 5 month old daughter a shot everyday. Or waking up at 6am to give her hydrocortisone. Or letting her drink water! I shouldn't have to back track and have her sleep by my bedside again.

I know things will get better with time. This will become second nature, a new routine, part of the schedule. But I can't help but feel a major loss to what we had accomplished before all of this set in. And it just makes me so angry.