Monday, August 8, 2011

Becoming a NICU Warrior Mom

Ethan and Aria were born prematurely thirteen weeks ago. Ethan has been at the NICU (Newborn Intensive Care Unit) since he was born. I have decided to devote the next few blogs to sharing the lessons I am learning from the NICU experience.

I have been transformed into a warrior mom during my son’s journey at the NICU.

In the beginning of Ethan’s stay, I was quite the opposite of a warrior mom. I was completely overwhelmed the first few weeks actually. I was recovering from a c-section and had a newborn at home on top of having a child in the NICU. I was sleep-deprived, and my body was going through a huge hormonal transformation. I was overwhelmed with guilt regarding both children, feeling torn between them, and in the meanwhile, not taking as good care of myself as I needed. I missed Ethan terribly, but wanted to be fair to Aria as well. My feelings of guilt have not gone away, BUT I have come to accept that we’re doing the best we can with the situation we’ve been given.

That feeling of acceptance of the situation took a while. And in the beginning of his stay, all of those feelings I just mentioned were distracting me from the matter at hand – providing Ethan with the best, most loving care possible.

I listened to what the doctors said about my son and his care. I asked questions, but I didn’t question. I didn’t want to upset any of the nurses since they were with my son, caring for him, much more than I was.

Then issues began to transpire. I was not happy with some of the directions that were being taken regarding his care.

One of the issues that concerned us (and still does) was consistent care and the passing on of information: The doctors work on rotations. The nurses work in shifts. The residents are there on a monthly basis. We found that each doctor has their own approach, and plans would change constantly. People are human, sometimes details get lost when passed from one person to the next, and messages were not necessarily being passed on from nurse to nurse effectively.

What this means is that our son was being passed from one hand to the next, and not receiving the same care. So he became inconsistent. For example, eating really well one day, and not the next. Growth and eating healthy are very crucial parts to a baby's well-being. My husband and I were the only consistency in his life, and we couldn’t be there all the time.

Time was passing. I wasn’t at the stage where I could see what was going on clearly. And I couldn’t understand why my son was still there or what was keeping him there. What still had to be done to get him home?

I really didn’t know who to speak with about the issues, and it was hard for me to put a handle on what was bothering me exactly. I was more emotional than effective. So I would speak with the nurses. I developed relationships with many of them. And as I spoke to them more and more – and spent more and more time at the NICU, I began learning how things work around there.

One of the nurses suggested that we ask for a family meeting to discuss a plan for discharge with the doctor. My husband took a day off from work. We brought Aria with us. And we sat with a team of doctors involved in his care, along with a nurse Ethan had never seen before and one of the residents.

We asked about the plan for discharge, or the plan for getting him ready for discharge. The doctors seemed to have a different agenda for our meeting though. They wanted to talk about their search for an answer to the BIG question: Why did my son stop growing in utero at 26 weeks? Is there something else going on besides being a small, premature baby?

The doctors told us about a series of tests they had run and were going to run. And their theories as to what could be happening. And I was overwhelmed with emotions once again: Oh no, what are they going to tell me that my son has? I thought we were going to talk about my son coming home. I knew they were running tests, but I hadn’t given them much thought. (In the meanwhile, all of the tests have come back normal.)

It hit me a week after that meeting, after I had gotten hold of my emotions. If he has something, we'll deal with it. That's not keeping him in the NICU though. Right now, our focus and our main goal is to get him home. I had been distracted by other things rather than doing everything I can to get him discharged. My son needed me to be more involved. Like super duper, above and beyond involved. I needed to be clear-headed, understanding, prepared, smart and intuitive. I needed to speak up when I didn’t understand or was unsure of a treatment. I needed to be on top of things. I wanted to know about every test, every feeding, every prick, and every poop.

My husband and I began doing research. Asking questions. I began speaking to the doctor every day, and I still call the nurses several times a day to ask for updates. I started taking notes and tracking his progress. I wrote down the names of all the tests and asked for reports. I want to know EVERYTHING. I learned how they calculated certain measurements, and I began calculating them too. We complained to the NICU bosses regarding consistency in care, and sure enough, notes began appearing on our son’s crib with plans of care. And when something doesn’t go the way I think it should go or am confused about how it should go: I speak to the doctor, the nurse manager, or the patient relations representative (depending on the situation) and things get taken care of immediately.

I really don’t care if people like me or not. This is my son’s care we’re talking about. Yes, it is more effective if I approach practitioners in a user-friendly way, and I do my best to stay calm, clear, and understanding. That’s for sure. But that doesn’t mean that I have to go out of my way to please them if I see a problem either.

In the meanwhile, I have come to realize that the NICU staff – from the doctors to the nurses to the secretaries – really, really, really do care about our son’s well-being. And they will do whatever they can to help him. I know that for sure.

We’re all human. We all try our best. And our best might change at any given moment. And that’s why I’ve decided to become as clear as I can be of emotions that hold me back, and to transform into a warrior mom.

1 comment:

  1. You can do it. I know you can.
    And yes, sometimes you have to be the warrior mom to make sure your child/ren are getting the best care for them.
    Hugs and I hope Ethan will be home and healthy very, very soon.