End. Of. Rope. Day.

We thought we would be taking Maci home today.  It's disappointing that we aren't even though we know it's best to get kinks worked out before we leave.  Her drains haven't been consistent so they will need to be predictible before we can go home.  The last thing we want is for her to retain fluid and to end up back here.  If we leave and go home and have to come back we can't come back to the NICU because the NICU is only for babies who have never been home or out of the hospital.  I don't think I could start over with new nurses and doctors.  Nope, no can do.

Yesterday was a VERY rough day for me.  I was at the end of my rope and barely hanging on.  I was SO tired.  My body hurt, my head hurt and I could have probably fallen asleep standing up had I stood still long enough.  I finally got a nap and thought I would feel better and I did, a little.  I took another short nap in the afternoon and still went to bed early.  I felt better and more rested this morning although I could still take a nap!!  I don't know that I have ever felt this exhausted both mentally and physically.  I was ready to scream!!  If this seems like I am complaining, well....I AM and I can!  Despite the fatigue, I continue.  I keep going.  I have to. 
If I were told that all of this was going to happen before I had Maci, I would choose to go through this.  Maci is one of the most precious things I have ever been given.  As much as she needs Rick and I to care for her....we need her too. 

Rick and I have completed all of our trainings needed prior to going home.  I took a truck load of stuffed animals, clothes, etc home already and we are still preparing to get out of here.  I really want Maci to go to church on Easter so I hope we are able to take her!  Maci is just so unpredictable.  She has been from the beginning and maybe it's part of her purpose....to keep people guessing and learning. 

There are so many things that need to be changed with healthcare and medical equipment.  I am learning different things and plan to advocate for change.  It will probably not change for Maci but if it can be changed for future infants then I will consider my work and time a success. 

Today is gonna be a better day.  It already has been and must continue!