You probably never realize how many simple things you take for granted on a daily basis. This journey has taught me to appreciate every freedom we have no matter how small. Sometimes being in the hospital/NICU can feel like you are being watched and dictated by Big Brother. Now, I understand the need for doctor's orders. I know they are only looking out for the best for us, but regardless, it can make you start feeling completely out of control of your life.
It started in Labor & Delivery when I learned that I would have to get a doctor's order to take a shower. That shower approval was huge after being on magnesium sulfate, a catheter, IV fluids, leg compressors, and completely bed ridden for 72 hours. Next, I was given the freedom to take a wheelchair ride, by doctor's orders of course.
Then on to the NICU where doctors orders along with NICU rules dictate everything you can and can not do.
For instance, you are only allowed to show your babies to 4 visitors which must be the same visitors throughout your whole NICU stay. And, no it is not 4 visitors per baby; I tried that one. Shouldn't we be allowed 8 since we have 2 babies? By the way, Mom or Dad has to be present along with only 1 visitor at a time.
I am constantly wondering, "Am I allowed to do this?" If I stop by another babies' bedside to say hi to another mom, I feel like the nurses are frowning upon us as if that is not allowed. I look around to see if any nurses are around if I want to use the sucker thing to get the bubbles out of their mouths. I'm not sure if I'm allowed to do this. Is it okay if I use one of those little saline wipes to wipe the crust from their eyes or is someone going to come tell me that I shouldn't be doing that? Can I bring blankets from home to put in their crib? Is it okay for me to just lift them out of the crib or is a nurse still supposed to do that? Can I go get the comfortable chair two bedsides down? Can I go look for a breast pump on my own or do I have to ask a nurse every time I need one? I've adopted Nike's slogan in my decision-making, "Just Do It." I figure if I am not supposed to do something, sure enough, someone will be there promptly to tell me it is not allowed.
In the beginning, we were told when, how, and for how long we could touch our babies. (I understand they were very fragile, but it is nonetheless strange to be told how and when you can touch your babies' fingers.) As time progressed, we were finally given doctor's approval to be able to do kangaroo care. This actually had to be in written orders in their charts. Eventually, we were able to dress our babies. Again, written orders were necessary to do this. Breastfeeding also requires a doctor's order. Even though I had been breastfeeding Camdyn for 2 days already, the nurse told me that there were no orders for that. I told her I had already been doing it for 2 days per doctor's verbal approval, so she went and got written orders to continue breastfeeding.
With all these orders to do the most basic things like touching, holding, dressing, and feeding your own baby, you would think they would get their own orders straight. For those of you who have been reading my blog, you know how upset I was by the eye exam mistake. I also noticed at one point that Cade's cannula water tank had a sticker that said "change on Thurs." and it was already Saturday. Just the other night, the nurse told me that Camdyn was going to get feeds once every 4 hours. I had to tell her that the order must be wrong because she gets feeds once every 3 hours. She checked with the doctor and sure enough, I was right. That means she would have missed an entire feed that night, and she needs all the nutrition she can get. Now, I understand that people make mistakes and there are miscommunications (and overall I love their doctors), but if it is necessary for me to get permission to do everything, then they should make sure that they are giving them eye exams only when necessary, changing out the water in the cannula at the right time, and feeding my baby the right amount of milk.
Jimmy has joked that if we are there for much longer (which it will still be a while), that I might start writing the orders and asking the doctors to sign off on them. Not a bad idea! (just kidding)