Friday, November 4, 2011

How to Advocate for your Child While in the NICU

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How to Advocate for your Child While in the NICU

By Lisa Knigge Rondeau

Having a baby in the hospital is one of the most stressful events for so many reasons—in many cases, it is unexpected, which leaves parents unprepared and overwhelmed by the hospital setting; Mom is still recovering from the baby’s delivery and possibly emergency surgery herself, leaving her in pain and low on energy; and of course, the worry about your baby—the medical terms, diagnoses, tests, procedures—it is all too much to take in. With so many emotions flowing through your head, it can be especially hard to effectively manage your child’s care and be an advocate for them.

Wanting to be an advocate for your child and actually being one are two different things. If your anything like me, you might find yourself vacillating between two extremes as you try to handle your NICU stay—keeping your feelings of frustration, fear, and anger bottled up inside, choosing to cry when you are in the comfort of your own home; or taking your feelings out on those that are closest to you—your spouse, partner, friend, or parent. While those options are bound to happen to even the best of us, they don’t really help in the long run. They don’t offer any long term solutions for dealing with the new world you find yourself in.

Most people that find themselves with a child in the NICU don’t have a medical degree, and no matter what your background, all the new medical talk can make even the most at ease parent feel unprepared and unknowledgeable. Doctors and staff members seem to talk so fast as they give you the updates: “Three brady alarms today, trying to increase feeds to 15cc’s, testing billirubin levels and a head ultrasound later. Any questions?” If this is your first time (or tenth, or hundredth, it really doesn’t matter) hearing some of these terms, you will have LOTS of questions, and it can be difficult just to know where to start.

Here are some tips to help you manage the information and advocate for your child:

1. 1. 1. Keep notes in a dedicated notebook

When I arrived in the NICU, I had nothing with me besides my purse. My first days of notes were on the back of a grocery receipt until my husband could go get me a notebook. In an emergency—any scrap paper will do, but try to keep all your notes in one notebook that is just for hospital information. Start a new page with the date, and take all your notes there. Try to focus on getting the important information down—spelling and penmanship doesn’t count now—you can fix those items later if needed. Long names of diseases or disorders can be looked up later for more information by you or often times in the hospital’s resource center if one is available.

2. 2. 2. Say what you feel

If you are having a conversation with a doctor, nurse or other staff person, and you are feeling frustrated, overwhelmed, or upset, start by saying just that. It allows everyone to know where they stand in the conversation and helps the staff members meet you where you are at. If they think you are handling everything just perfectly, they might not take the extra time to slow down and make sure you understand everything. So go ahead and start by saying “I’m feeling very overwhelmed right now.” Then clearly state why you are feeling that way: “I was here all night last night due to my daughter’s surgery, and now she might need another one. I don’t understand why that is.” You don’t have to go on and on if you don’t want to, but telling everyone exactly what you are feeling and why allows them to direct their answers to those feelings, and not whatever they might think you need.

3. 3. 3. Speak their language

Let’s face it—everyone communicates differently. As a NICU parent, your daily emotions and well-being revolve around your child and how he or she is doing. But this isn’t true of doctors and nurses who care for multiple babies each day, no matter how hard they are working to get your (and every baby) well. So in a sense, parents are speaking a different language than staff members. Whenever you can, speak their language to help get direct answers. For example, one of my favorite phrases to use with my girls’ doctors was “What is the criteria for ______”? After several days of my asking the doctor when I could hold my daughter, only to be given answers that were unfulfilling to me, like “when her arterial line comes out,” I had to speak a different language. When the doctor would give me a condition like that, I would then respond, “and what’s the criteria for that?” and allow them to answer, which gave me more specific and manageable information to work with. I knew then what specific steps had to be done to get me where I wanted to be.

4. 4. 4. They work for ME

After many long days and nights in the NICU, I started to take the attitude that the doctors and staff there worked for me, and would need to start behaving accordingly! No, I didn’t get a bullhorn and yell or anything crazy like that, it was just something that I silently repeated in my head to help get me in the right frame of mind. Too often, I felt powerless in the NICU—the fact that I was teacher meant nothing here—my education proved totally inadequate. It was so easy to feel that everyone around me was smarter than me, knew more than me about my babies, and I just had to listen to what they said and nod along nicely. But that of course is not true. So I started to see them as employees that I had the right and obligation to question if something wasn’t going well. I would remind myself that I knew my babies just as well as they did, (if not better!) and that even though I didn’t go to medical school, I can still understand if given the right explanation.

5. 5. 5. Ask to speak to the charge nurse

Did you know there is a charge nurse on each shift in the NICU—a nurse, whose job, in addition to caring for babies, is to oversee NICU issues and address concerns? I didn’t know about this until about one month into my stay. Whenever you are concerned with something regarding the care of your baby, and if that concern is not adequately addressed, ask to speak to the charge nurse. This can be easier than it seems because most of us are and want to be nice, we want everyone to like us and we don’t want to seem difficult and get labeled as “those parents.”

But even if the worst case scenario came true, and everyone thought you were a big meanie for talking to the charge nurse, wouldn’t that still be worth it for your child? Isn’t the risk of having someone—someone who will only be in your life for a short time—not like you a small sacrifice for the care of your child? Of course it is. So speak up when you need to.

Above all, trust yourself. If something doesn’t feel right, say so. If you have a question, even a “dumb” or “quick” one, ask it. Talking the extra effort to make sure you understand so you can be the best advocate for your child is worth it.


Very well written and it covers everything. One note I would love to add is after many years of distance and discussing with the health professionals who took care of us and our child, they view parents who do advocate as the "best". Even if they are labeled "those parents", they know that it comes from love.

A NICU Social Worker I know also stated to me that parents can behave just about any way they want because I would be a basket case! Truly, they do understand - they can't imagine but do imagine and they want to help.

A well run NICU - their staff will tell you their job is to take care of not just the baby but the baby's family too!

Wow. I was sent a link to this post. As a NICU parent survivor and a midwife, I've longed for a resource like this. Brava. Thank you.

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