Here is a lesson that I believe is important for just about any parent, but I can about guarantee it's vital for a preemie parent-- speak up. Learn to ask lots of questions. Take notes if you need to. Do not assume that medical staff will remember and/or have record of every little detail about your child.
Here's a recent example of just what I'm talking about:
Yesterday, we took our former micro-preemie (now 2 1/2 yrs old!) to the hospital for eye surgery. We went to the same hospital where she stayed in the NICU. We were there for 3 1/2 months at the time. We've been back a LOT. We've been featured on the news for this hospital. We filmed a COMMERCIAL for this hospital. Suffice it to say, they know who we are.
Nonetheless, when the anesthesiogolist popped his head in her pre-op room, he was armed with Versed, a medication used often in children to create a kind of "amnesia" so the process of surgery is less traumatic. This is standard procedure. In most cases, it's a wise way to go-- it eliminates separation anxiety and reduces fear for these children. However, Mommy knew better in this case...
Way back in the day, when she was just itty-bitty, C had to have laser eye surgery. She was given Versed (by the same opthamologist's team) and had a reaction. By "reaction", I don't mean she got nauseous. I don't mean she had irritation. I mean she went into respiratory distress and had to be put back on a breathing machine. Yikes.
And so I spoke up. I retold the story and listened patiently to the anesthesiologist tell me why he felt such a reaction was unlikely to happen again. He may well be right. I didn't want to take the chance. I know my child. I know how tough she is. I asked that he attempt to put her to sleep without it-- I assured him that she separates well and can tolerate a LOT without "freaking out". He agreed to try it.
Five minutes later, her nurse popped her head back into the room, smiled, and said, "She went to sleep beautifully. Dr. N has already started the procedure."
No Versed needed.
You know your child. You love your child. You NEED to advocate. No one will judge you for making educated requests. Keep it polite, keep it informed, but speak on up! You have my support and prayers...