Learning To Advocate

I very clearly remember meeting the NICU social worker.  It was a week after Charlie’s birth. She was explaining NICU life, support systems, available resources, etc. Fortunately, she handed a stack of papers to me with the information in written form. My mind wandered as I thought about my baby, wondered how we ended up there, and worried about my lack of milk. Despite the mental fog, I do remember hearing her say, “You need to advocate for your baby.”

That statement perplexed me. What did she mean by advocate? They are the professionals. Won’t they always do what is best for my baby? I am at their mercy. I barely know a thing about medicine and even less about babies. I felt powerless. For what am I supposed to advocate? It did not really make sense at the time. However, I remembered her making that remark.

During Charlie’s first two months in the NICU, she was at a very large hospital with a giant open NICU. There was not much reason I felt the need to advocate. It seemed like a waiting game. Everything changed when it was time for her transfer.

Once she was well enough, we were planning on having Charlie transfered to a smaller hospital with private NICU rooms. I felt like I was losing my mind being constantly on display in the big NICU. I did not mind the nurses. The other babies’ visitors were the people I had an issue with.

I was crushed each time I would hear, “I did not know babies that were that small could live!” as people walked by Charlie’s isolette. People who could not resist the urge to peek over the screen on the few occasions I was able to kangaroo with Charlie were annoying. It angered me when people in the NICU waiting room would let their children run wild while other families were receiving devastating news in the same space. Worst of all, were the people whom insisted they weren’t sick when a nurse asked them about a cough or sniffle. Inevitably, the whole NICU room (it happened three times during Charlie’s two months) would be “in isolation” the next week due to outbreak of illness.

The staff and nurses were great. I grew weary of the other people. The lack of privacy was starting to affect my baby’s care. Kangaroo care was not allowed during isolation and I did not want her to have an illness brought in to her.

Finally, the day came that Charlie was declared a “feeder grower”. It meant she was well enough for transfer. My husband and I were ecstatic. Our drive to the hospital would be much shorter and we could have our privacy! It would be one step closer to home.

We anxiously waited days for the transfer to happen. Each day, we were told that it was time. However, “It will probably happen tomorrow” was all that we were told.

After a week, I had enough. I told my husband, “I’m not leaving the hospital today until I get Charlie out.” I sent emails and had a face to face meeting. Charlie was scheduled to transfer in less than twenty four hours. In short, the problem was that she was lost in the system. I don’t know how long we would have waited had I not decided to speak up.

That was my first experience of advocating in Charlie’s care. At the time, I felt guilty for raising a fuss. I was concerned that I was creating problems. In hind sight, I do not regret it and see that it was necessary.

Later, there were smaller issues in which I needed to speak up. For example, there was a visit with a particular specialist. She asked, “Why is Charlie wearing pink?” as she entered the exam room. I was not offended. Things like that happen with a name like Charlie. When I explained Charlie was a girl, the doctor told me that if I wanted to call my baby Charlie then I should have named her Charlotte. After she inquired why Charlie was so small, I requested Charlie be examined by another doctor.

The biggest and most recent example of advocacy occurred when Charlie could not move. I was told by numerous health professionals to “wait and see”. However, I knew that something was “not right”.

She missed all of her milestones at three months (adjusted). At six months, we were still waiting. I saw the look on the faces of medical personnel as they examined her. It was the look of quiet concern. I saw that look plenty of times during the three and a half months she and I were hospitalized. I wanted someone to come up with a plan rather than “wait and see”. I made sure that Charlie’s case was not handed off or left needlessly waiting. I asked questions and prodded for action. Mostly, I made sure that Charlie got the care she needed.

In the end, it does not matter to me if I come of as neurotic, pushy, obnoxious, or difficult. It is about Charlie, not me. What matters is that Charlie receive every opportunity to have a healthy and well adjusted life.

To me, being an advocate does not mean making sure that things are always fair. That would be an endless and impossible task because life is not fair. Instead, being an advocate means speaking up so Charlie gets what she needs.

I consider it fortuitous that out of everything that social worker said, I heard her instructions to advocate.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

5 responses to “Learning To Advocate

  • Tatum

    That first NICU sounds awful. We didn’t have private nurseries, but there definitely weren’t kids running around or people popping their heads over barriers.

    More importantly, great post. Advocating is so important and it does feel uncomfortable at first, but I can say that I only regret the times I didn’t speak up. Never the times I did…even if i wasn’t right. My questions were valid and deserved to be answered.

    Like

    • woodra01

      The NICU staff was wonderful. The majority of the problem stemmed from the NICU being too big for the space that it was in. They had isolettes back to back. There was very little space. I think the NICU has since been closed and moved it to a new space.

      I was baffled by how people behaved sometimes. One mom explained to me that there were a lot of babies that were there for only a few days. Those visitors did not understand about having a critically ill infant. Nevertheless, the inconsideration I witnessed is a sore spot. Although, I am not sure if it rubbed me the wrong way because I was so sensitive at the time or if I would be bothered just as much now.

      Like

  • HighFunctioningMomism

    Have you ever heard the quote, “fair doesn’t mean everybody gets the same, fair means everybody gets what they need.” I’m glad you learned to advocate for Charlie and I’m glad you got over feeling like a boat rocker! It’s not easy, but it’s necessary! My son has autism and we had to learn to advocate, too (and one of my NICU twins was delayed for the first 2 years and was diagnosed – and undiagnosed- with spastic diplegia.) I get where you are coming from! Really enjoying your blog, btw!

    Like

  • Julie S

    Rebecca,
    I really love your blog, especially the Woodland Creature (I’ve been following ever since.) I’m new to blogging and I’ve so inspired by my fellow bloggers! Please accept the Sunshine award to recognise great work that is full of life! http://advocacyautismspecialneeds.wordpress.com/2014/02/14/sunshine-on-a-poopy-day/ (don’t worry the poopy day is just because we’re potty training 🙂
    Happy Blogging and Warm Wishes of Sunshine!
    Sincerely,
    Julie

    Like

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