Thursday, March 8, 2012

What Nobody Really Talks About

     A few weeks ago I had a breakdown in the hospital. I started crying to the nurse and saying, "Why can't you just turn his head the way he wants it?"
     There were a lot of things leading up to this moment and they all have to do with the interesting dynamics between parents and nurses in the NICU--both good and bad. I did talk to Amy Lindstrom--who had twins in the NICU-- about this, but I don't feel like it's talked about that much. I would love to get some feedback from you NICU moms, nurses, or anyone else. 
     Many of the nurses have been working at the NICU for 10-20 or so years. They care about these babies and have to do things for them that most parents don't have the expertise to do. They are with the babies 24/7 and the parents aren't. But with the exception of primary nurses-- nurses that you choose to be assigned to your baby when they are on shift-- nurses may switch from baby to baby every other shift, which means parents can have new nurses maybe three to five days a week. (or more, depending on primary nurses or the other babies in the room's primary nurses) This can be difficult, because although NICU nurses have had years of experience with premature babies, it may be their first time working with your baby. As a parent, I see my baby every day  and know my baby's personality, and there is something to be said about being your baby's advocate. Sometimes there can be a bit of a power struggle between parents and nurses. For the nurse, it's their work space, their expertise, and their domain; for the parent, it's their child. I could expound more on that but maybe it would be better if I tell you my story and some of the difficulties I faced.
     Also, I wanted to tell you these experiences because I love all your sweet comments and compliments, but I don't want to give you the impression that we handle this perfect all the time, because that's definitely not the case.
 I think the University of Utah Hospital NICU doctors and nurses are the best of the best at what they do. People fly in from all over to be here. It was definitely a tremendous blessing that we ended up at this hospital. But I think, especially because of Skyler's size and age--and the amount of time he has been/will be at the hospital--there are bound to be some conflicts. (Skyler's two month birthday is coming up). It's pretty emotionally draining to write this but maybe it's good to cover both the good and the bad.
     A few weeks ago Skyler was having a really rough time. He had a lot of fluid and congestion in his lungs making it difficult and stressful for him to breathe. His breathing and heart rate was very volatile etc. This made him more agitated about things, and he couldn't stand being on his back very much. One nurse explained it this way: it's like being really congested so that it's hard for you to breathe on your back. So what do you do? You cough, or put pillows under you, or turn over. Well, Skyler can't do any of those things and if he tries to move, the tubes in his mouth will pull on his face. (He was still on the ventilator at this time)
      It was obviously a stressful time for Skyler and for us. I wanted to be able to take care of him so badly but I'm not the nurse and I was afraid to turn his little body on my own. Some of the nurses were extremely gentle about turning his body and doing his cares, but others were not. He was still only 24 1/2 to 27 weeks gestational age-- so tiny!
     One day I noticed something was wrong with Skyler while he was laying with his head straight on his back. He kept making this face and opening his mouth wide but he wasn't yawning. I mentioned it to the nurse a couple times, but she said he was fine and would calm down. I looked in his incubator feeling so helpless. When I looked up at the clock I realized that three hours had gone by. Another nurse came in early to take her place, and I told her what he was doing. She suctioned his mouth and he improved immediately. She said, "Oh, it looks like he was gagging on his own spit." Since he couldn't swallow very well then, and tends to get more saliva in his mouth than other babies, he was literally gagging for hours. It was then that I realized that some nurses may catch some things that others don't. But I knew that was out of my control. How could I help though? Should I try to be there more often to make sure he is doing okay, I wondered?
     The next day I asked a nurse I had never had before if she could make sure to suction his mouth often because he gags himself sometimes. She said she did it every care but I caught her giving another nurse by the room a look and smiling while saying it; It felt to me as if she was saying, "Oh these silly parents, we know what we are doing." Granted, we have to take into account that I am over sensitive because it's a difficult situation anyway. But sometimes I get the feeling that some nurses feel like they have been doing this forever and they know what is best. And well, they do, but the fact is that I see Skyler every day and every baby has their quirks.
     Something important to know is that the nurses turn the babies every which way to make sure that there heads stay round. But both Chris and I noticed that Skyler seemed to be on his back 70 percent of the day. I tried to ask this particular nurse to put him on his belly more but she said she needed to keep his head round. Yes, of course I want him to have a round head but that wasn't my main concern then. She left him on his back even though I saw it was upsetting him. Things like that were really hard to see. I kept thinking how stressful it would be if I couldn't breathe very well, and was forced to stay in that position. 
     I ended up talking to the doctor about him being on his back so much in his condition. His response was, "He really doesn't have to be on his back that much. You're right, he can be on his belly for a lot of the time. They do oxygenate better that way and it doesn't harm them."  This was good news because one of the nurses had told me, that while they're on the ventilator, being on their belly too much can harm their lungs. She wasn't lying to me or anything, that's just what she thought.
     The next day I watched a nurse--who I thought was very sweet-- pinch his chest over and over during his cares. I found out later that this is an okay method to check for dehydration on a much older preemie, but not on someone his size. His nervous system isn't fully developed and even rubbing his skin is painful. You are also supposed to give them as little stimulation as possible to help them sleep and grow, and to avoid bleeding in the brain. But I watched her do thing two or three times, more than I had ever seen other nurses. The two nights he was with her he was the most upset I had ever seen him. He was freaking out: trying to pull his ventilator tube out, flailing his arms and legs around--it was awful.
     The first night it happened, I knew it didn't look right but I wasn't sure. I mean, she was the nurse right? I woke up in the night so upset about it, replaying it in my mind, the way he jumped when she pinched him. When it happened again the next night I was there, I finally asked her to stop, but she had already pinched him at least nine times. (three sets of three) And I knew that was just the time I was there to see it; they do cares every three hours.
     The next night I talked to a new nurse about it. She said she had never seen another nurse pinch a baby in the NICU before. But I still didn't tell a supervisor about it. I mean, she was so sweet. I didn't want to get her in trouble. But later that night I felt guilty that I hadn't said anything and protected Skyler more. What if she was there the next night? What then?
     The next day I decided to tell a supervisor-- known as a charge nurse--when I got in. When I pulled into the parking lot I told myself not to overcompensate for not saying anything before. Sometimes I can overcompensate when I realize something wrong has been happening for too long--like a person who over corrects a car instead of turning slightly.
      When I got into Skyler's room I saw that it was a different nurse. It was a  particular nurse we had had before, and I thought she was rough when she pulled the ventilator to adjust his head-- not like some other nurses who were really gentle with him, especially with the stiff tubing in his mouth.
     While I was there to see Skyler this nurse had me unplug my computer in the room until someone could come check out my equipment to see if it was okay for me to plug it into the wall. We have never had a nurse have a problem with us having a computer in the room, and it felt like she was going out of her way to control the room. Of course, I was already sensitive that day and felt very acutely that I was a guest there.
     During cares she moved Skyler on his back with his head straight, and he kept trying to turn his head, but was pulled back by the ventilator. I asked if she could turn his head just a little because he wanted it that way. He was obviously upset. She simply said, "No, he will calm down." She had already given him the sedative--ativan minutes before, to help him calm down. I left the room and came back about fifteen minutes later and he was still really upset, and was trying to move his head. Then the nurse told me she had just given him Morphine on top of the ativan because he was still upset. I looked into his incubator to see that she had left his head in the exact same spot. Hadn't I just told her that all he wanted to do was turn his head? I knew that was all he needed. I had told her, but instead of doing what I asked she gave him extra drugs to wipe him out. I don't think many nurses are like this, and she is definitely the extreme. She seemed liked it was all about control or doing things her way.
     That's when I started crying-- sobbing really. I asked her, "Why can't you just move his head the way he wants? The doctor even said he doesn't have to be on his back like that right now." She walked out of the room and got one of my primary nurses to come talk to me. Even after that she never moved his head until it was time for his next set of cares.
     That day I went in to the charge nurse and asked for all three nurses never to be his nurse again :this one, the one that pinched him, and the one that I didn't feel as comfortable around. I think I added the last nurse because I was overcompensating for not speaking up about any of them. It turned out that the last nurse was one of the charge nurses or supervisors.  
     One of our primaries, who is also a charge nurse, ended up telling Chris that a nurse said that I was there at the hospital all day and that I was always staring in at Skyler and worrying about him. She also told Chris that she noticed I had a long list of nurses that I didn't want taking care of Skyler; then she said that every nurse may do things differently but that they all love the kids. It was all so hard to hear. I had felt guilty not speaking up and now a part of me felt guilty for speaking up. Plus, did that mean that some nurses did not want me there all day? Did they think I was in the way? 
     She also said that the other nurse said that I reached in his incubator a lot, and that he needed his sleep. It's probably true, I did reach in there a lot that day. I was a little sad because they had told me for the third time I could do Kangaroo Care, and when I got there that nurse said he wasn't ready. (Not that I'm saying it's the nurses' fault, it was just hard because I wanted to hold him) Usually I only reached in there if he was awake and looked uncomfortable in some way.
     Last week another nurse, that was really nice, told Chris the same thing about not reaching in too much. Chris said he had watched Skyler for ten minutes shaking his arms, or legs, and reached in to comfort him. She said Skyler needed to learn to calm himself down, which I understand. But at the same time he is a preemie, and just being out of the womb is stressful; anything that relieves his stress is a good thing. Chris also made the point that we are not here all the time and that he can calm himself down when we are not around.  I know there's a happy balance somewhere. And I know she meant well and probably didn't see that he was shaking; He wasn't crying and the computer monitor said he was fine. It's just hard sometimes because we want to be his parents and feel a part of his life. In other situations, parents make decisions for their kids and don't have to ask permission to touch them or have to worry about if they are around their baby too much. The parents are usually the ones making the call.
     I know in the big scheme of things, this is a small price to pay for the wonderful care he is receiving at the hospital. The doctors and nurses work so hard on his behalf, and modern technology saves his life every day. But it still is difficult sometimes and I think that's important to address--and see if others have shared in this experience. 

13 comments:

  1. Leah, I hope you don't think it is weird that I'm commenting on your blog, since I don't really know you, but we went to high school together and I saw your blog on facebook and couldn't help but read it since I had a preemie as well. My son was born at 24 weeks, and I always felt like it wasn't my place to speak up about his care or the nurses until one of his charge nurses that we respected told us if we ever had any concerns that we were more than welcome to talk to the charge nurse. Well this wasn't until after he was a couple weeks old and we had been bottling up our concerns. We finally talked to the charge nurse, and as the parent that is our right. We (especially as mothers) have that special connection with our preemie that we can sense when something isn't right. Go with that instinct! Even to this day one of my only regrets as a mother of a preemie is not really speaking up when I was concerned. And when I know others who have a preemie or a baby that has to spend time in the nicu, that is one of the things I always tell them...don't be afraid to speak up about your babies care. It sounds like your little one is a great fighter, and I wish you and your family the best of luck!
    -Tracy McMillan

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  2. Leah! I agree with the comment above. When you are there with your baby everyday and being the mom you know what your baby needs (you don't need a nurses degree to know your child temperments). Don't be afraid to speak up, ask questions, get different nurses opinions and if something doesn't seem right don't let a nurse make you feel dumb for speaking up. Skylar is your baby and your focus and if someone doesn't make you feel comfortable then they shouldn't take care of him. (we had a few nurses that we requested not to be our nurses)! Good luck Hun!

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  3. hang in there, honey. I think you are doing great. Skyler is lucky to have you as a momma.

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  4. Leah, having a baby in the NICU is by far the most emotional and physically draining thing. My baby was at the U of U. I had some of those same things happen to me. Except i didn't know there was a charge nurse that i could complain to until we were out. I also went everyday all day to sit with my baby boy. I had my favorite nurses and not so favorite. I think its so important to voice your opinion, the mothers feeling is usually right. you know your son, don't be scared to ask and ask again until you see your son comfortable. My prayers are still with you and your family.

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  5. I saw your link on Facebook; I hope it's ok that I'm commenting :) you guys are amazing and little Skyler is a miracle boy! I agree. You are so in tune with your baby and should always feel comfortable speaking up. Nurses should know to respect that. It's also part of their training. In our hospital experiences with our son Ethan (not a preemie but he was in the nicu for a few days, surgery, allergies, and other hospital stays) we have run into nurses that we just didn't mesh with. What I learned to do was just be up front with the charge nurse and just say that they are great nurses but our personalities or values weren't meshing and we would like another nurse. When you talk up front and honest with them, we noticed accommodations were easily made and they actually appreciated our speaking up. You are doing so well - it is so stressful!! But remember you are the mama! :)

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  6. I agree. You need to fight for your little guy. Maybe the nurses are right sometimes and maybe they're wrong, but he's your son and he needs you. Be patient, but be firm. Learn what's happening and don't give up your efforts to make your boy as healthy and as comfortable as possible!

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  7. Leah, What a frustrating situation! I bet it is so hard feeling torn about wanting to take care of your baby and feeling like you are doing something wrong. Being a nurse, I can tell you that you run into so many different types of nurses, and don't think you are being over-sensitive because many times there are nurses that come off very abrasive and superior. I wish that weren't the case due to the nature of their work. . . I know it is probably hard, but you have the right to be involved in the care of your baby, no matter how the nurse treats you. I just wish some wouldn't make the already difficult situation you are in more difficult by acting certain ways. Where I work, yes this is terrible, but sometimes we get frustrated with families of patients. I had a paradigm shift a few months ago regarding this though when we almost lost my dad. He was in critical care in the ICU for a month. It was a whole different story when I became the patient's family member. I found some nurses were great, some were, well you know. . . It was hard to speak up when I knew something wasn't right, but who was going to if I didn't. Anyway, I realized that no matter how the family of one of my patients is acting, they are doing it out of love and concern for their loved one. Of course Nurse's have experience, rules and standards of care to follow, but not every situation or patient is the same. Nurses can be wrong sometimes too (as you have come to find out :) So my advice would be to follow your instinct. He is your baby and you know him best. Let the nurses know that you want to be involved in the care of your baby by asking questions, talking to them, get reasons for why things are done, and tell them things that you know. You are doing a great job, Leah! Just remember if any of those nurses were in your shoes they would be doing the same thing. I wish you and your family all the best!
    Nancy Bunnell

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  8. Hey Leah,
    This is Shallan (from High school). I've been following your story. I just wanted to say that I'm a nurse, and I understand what you are saying. A lot of times, nurses (myself included) focus on the tasks at hand, and the jobs to do, and do not realize that they are actually taking care of a human being. It is easy to forget that you are dealing with a person when you focus on all the tasks. Being a nurse is really hard because it is stressful and you have someone's life in your hands. But that is no excuse to treat a person like they are an object. That is what it sounds like they are doing with both your baby and you. I feel so bad! You guys are being so brave and strong, and I completely agree that you should be advocating for your baby; someone has to! The nurses do not always have his best intentions since they are human too and may be thinking about their next break, what they have to do when they get home, how tired they are... so you just can't rely on them all the time. I would continue to speak up for Skyler, and don't feel bad about reporting the mean nurses, everything detail matters when your baby is that small in determining how they function when they are older. Good luck! We are praying for you.
    Shallan

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  9. Leah i think that you are an amazing mother!!! In the long run you will never regret sticking up for your little guy! The nurses need to understand that Skyler is your baby and as a mom we will always try everything to make our babies life easier/more comfortable! You keep speaking your mind! Love you and you are always in my thoughts and prayers!

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  10. Oh Leah! How stressful! You know I think your relationship with the nurses is an important one. It is kind of like when you get married to someone and have to learn to live with them and the way they do things even though they are different. Or how co-workers deal with handling the same job. All the nurses have to realize that you've got a little triangle going on and they need to adapt to you just as much as you adapt to them. Those NICU nurses are probably conditioned to keep those babies alive and when the baby is obviously alive and well (no beeping monitors) they see that they are doing their job. The NICU nurses probably haven't been trained as much in how to make the babies comfortable but how to just keep them thriving. So I think your presence in the NICU is critical because you complete fulfilling the needs that he has, which are both for his health AND for his well being. I don't agree with the nurses belief that he needs to learn to comfort himself...that blows my mind. He needs as much security as his little body can get, even if it is something as simple as turning his head. I feel sad that they made you question whether or not you are getting in the way. I think all babies, preemie or not, can never ever be given too much care. And it must be hard knowing that while you are away from him the nurses have a mindset that he needs to self-sooth. I don't think that any baby should be expected to do that until they are much, much older.

    I hope that these experiences make your future with Skyler all the sweeter. Someday you will be able to care for him exactly the way you want to.

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  11. Found a post that Brian's cousin wrote on the same topic about a year ago when her baby was in NICU. Check it out if you have time:

    http://ctpages.blogspot.com/2011/02/venting.html

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  12. Leah, keep fighting for your baby, even though you and the nurses are not on different sides, I agree sometimes they don't know or notice everything. I remember once when my baby was in the NICU I was doing Kangaroo care and my baby was breathing way fast, I asked the nurse and she said the machine must have been reading wrong. After we stopped we realized he was too hot. I was hot, but wanted him to be warm. Only regrets are not speaking up enough, but I think it's a balance. Go with the Spirit.

    By the way, here's some unasked for advice that helped me through my 2 NICU experiences. :) I won't know if you follow the advice, so do what you want. :)

    Go on a date, this was the most stressful things I've ever done. Destress sometimes and you'll be a better mommy for Skyler. You have the best "free" babysitters, use them sometimes.

    Have a bag or something you can put momentos in, and use it. When I scrapbooked my NICU time, I really wanted a billy band to put in there. My baby used one for so long. I did keep a tiny diaper. So cute!

    Be grateful! (that you don't have other kids at home) and just in general. It helped me be happier. It is amazing what technology there is. :) Give yourself a break, I bawled a few times in the hospital and my nurse said it happens all the time. It is stressful.

    Hang in there. Love, Apryl Callaway

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  13. Leah, first off your blog is so inspiring. You truly have been given a challenge but the Lord knows you and Chris can handle it(although I'm sure you feel at times you can't)
    Second off, I'm a nurse. Not a NICU nurse but an ICU nurse. I have to deal with families and there concerns daily. Let me be honest with you, you say you know all the nurses care about your baby and they have been doing this 10-20 yrs. Well not all nurses love their jobs, they do it cuz they have to. those are the nurses that aren't receptive to your concerns. Now I'm not saying they won't take good care of little Skyler but the nurses who love their job will be more receptive to the families. they listen to your concerns and they give you feed back. They should tell you exactly what they are doing it and why they are doing it (The #1 job of a nurse is to provide constant education to both patient and family) DO NOT BE AFRAID to voice your concerns. That is your job. I deal with family members ALL THE TIME that choose not to have certain nurses care for their loved ones. You are doing the right thing. And you have to know, that probably none of those nurses know what you are going through unless they have had a child in the NICU.
    Third off, you need to give yourself some alone time away from Skyler. Go get a pedicure, a massage or just simply go on a date with Chris. I know Skyler needs you and you want to be there for him as much as possible. I often have to tell family members to leave, go get fresh air, go out to dinner, whatever it may be because hospitaliztion on a patient not only effects the patient themselves but the family too.
    Hang in there. Again thanks for sharing your feelings cuz as a nurse it reminds me to continue to stay sympathetic of families needs and concerns. You are a strong woman and Skyler is so lucky to have you as his mom.

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