It’s been a along time since my NICU visits were hard, so I guess I was due. Today turned out to be one fo the lowest in days. I should have knownit would be baD when I spilled a full cup of hot coffee on me at breakfast.
I got to the hospital (after a costume change) only to be told we were going to have to move Sam from the large window spot to another location as he was having trouble staying warm enough. I didn’t think this would bother me, but when income back to the hospital this evening, it really got under my skin. We are in the same room but the middle spot. It is so cramped and public in this spot. I hate it! The options that they gave were not much better. I could stat where we were, but Sam would have to go back into an isolette or we could move to another window spot but if they get crowded, we would have to share the space or we could move to a nice roomy spot in a room with now windows (depressing!). We are going to give the window spot we might need to share a try.
It’s amazing how important the room is to a NICU mom. That is your home away from home. There is so little I get to control- where Sam is located is one of the few things I feel I can control…. At least until today.
Normally, this probably would have just irritated me, but I was thrown off my game by sam’s third eye exam. They are watching him closely for ROP and his last exam showed mild ROP. Well, the doctor saw something this time that concerned him. He has called in a retina specialist who will examen Sam Monday or Tuesday. The worst case scenario is blindness or it could be nothing. The lack of information is killing me. Plus, we had gone so many days with nothing but good news, this just hit me like a ton of bricks. I think this is the first time I have broken down and cried in the NICU Since before the PDA surgery.
Bottom line, I feel like I went 10 rounds with the NICU today and it kicked my ass.
Oh, Melissa, our hearts go out to you. It has to be so very very hard, and you rightfully let yourself feel the joy of “everything is all right” only to be slammed unfairly. But, as you said, it could be nothing at all. I’m so sorry you have to wait until Mon or Tuesday to find out. But little Sam is amazing, truly amazing. A couple of times I’ve gone back to your first posts and his strength of spirit is incredible. My friend with the triplets follows your blog as if it were her story since she experienced many of the same challenges, and now, at 18 months, they are 3 healthy triplets. She also wished she could have known it would all turn out fine as she says she spent weeks crying over their futures. Deep breaths and happy thoughts to you.
Linda & Steve Goldfarb