One more day until we’re released from the NICU and can GO HOME! I haven’t seen my boys since last Saturday, when I put Jacob in charge (just until aunt Jenna, five minutes away, could get there) and we ran out the door to the ER. I feel badly about the way all that played out, but I never had a chance to go back home afterward, and we decided that having the little two come and visit would be too traumatic: when they aren’t talking to me, they seem to to just fine, but every time we talk on the phone they fall apart. I think they would have had a really hard time seeing us and then having to leave us again. Boy, do I miss them.

Clara continues to do well. We moved into the “parent training room” yesterday, which means that instead of sleeping in a separate room on another floor, we have a little room with two sofa beds, a private bathroom, and most importantly, our BABY in it. Much easier, because we have constant access to her and don’t have to leave the NICU to sleep or go to the bathroom. If we’d had this set-up all along, our stay would have been downright pleasant.

I had an upsetting moment yesterday when the nurse came in to do some weight and IV flushing and mentioned that we’d have to wait until after the last dose of her antibiotic to do the state-required hearing screening. When we asked why, she said that the drug can cause hearing problems. After she left, I looked up the drug–gentamicin–and found that it is well known for causing irreversible hearing loss and issues with vestibular function (i.e. dizziness & balance issues). It was the first I’d heard of it, and Clara’s been on it for nine days.

After a closer look it doesn’t appear as though Clara is at a particularly high risk for developing these problems, but because the drug isn’t routinely tested on newborns, there’s no way to know for sure. I was really upset that we weren’t informed about the risks. In fact, antibiotic therapy (we still don’t know that she actually had an infection) was presented to us as a “Might as well do it, because there are no downsides” option. To me, the possibility of hearing and balance issues are definitely downsides!

I can’t say I’d have demanded alternate treatment if I’d known, but at least I’d have felt like I was part of the decision-making process. As I explained to the nurse practitioner who came down to talk to us about it last night after we had a minor flipout over the news, coming into the NICU, you give up so much power and so many rights over your own child. It isn’t asking too much to at least be informed and to have the opportunity to weigh the risks.

Most people, I believe, would still go along with what the doctor recommends–likely myself included. But in a hospital, you aren’t dealing with docs you’ve hand-selected…you have new caregivers every day, all of them strangers, and each has a different opinion about how things should be done. Why should I trust a doc I’ve never met, just because he’s got the white coat and the education? Doctors are still human and can make mistakes. And as I’m the one who carried her, gave birth to her and am responsible for raising her (and dealing with any issues that might come up later as result of treatment she’s had), nobody has the best interests of my baby at heart as much as I do. At least give me the information I need up front, instead of letting me be blindsided by it later.

The nurse practitioner seemed to get what I was saying and said, quite honestly, that they never discuss those risks with parents. She doesn’t know why, except that from their perspective, they put the biggest emphasis on keeping very sick babies alive and worry about other things later. I really do understand that there are certain standards of care that must be met for safety–and, let’s face it, liability–issues. And I understand that these docs and nurses see awful cases all the time and their first priority is protecting babies against being one of those awful cases. But that doesn’t remove the obligation to keep parents informed members in the process. It’s just the right thing to do. She seemed to agree, and said that it’s something she’ll talk about with the docs (as will I today when they make their rounds). Maybe they will make changes; maybe not. But I’m glad I spoke up either way.