Patient Experience in the NICU?

[Beggar♂]

Hello to all of you.

First, by way of quick introduction, I am 42 and am changing careers to become a nurse. God willing, I will be a NICU nurse.

I have all kinds of reasons for this ambition but predominant is my experience as a NICU dad watching my 27-week preemie cared for so well by a wonderful group of NICU nurses. Grace is five now ("Daaad, I'm five-and-a-HALF") and has no persistent deficits beyond some minor strength issues. I am so thankful for the dedicated women and men who so carefully tended to her and to us. They are my inspiration to perform the same service to other babies and their families.

Sadly, I was also impacted by a couple of nurses who made the whole experience so much more terrifying and painful than it had to be. While I'm not blameless in our interactions, these nurses had much to learn from their colleagues about relating to scared parents who're in a situation that's so out of their control. We were blessed to have some wonderful nurses around to help us cope with those disruptive interactions.

Some of the "graduating" parents helped us learn the ropes of a NICU parent and how to navigate the process. They gave us some guidance about some of the nurses and docs and explained some of our "rights" and "privileges" as NICU parents. In some ways, they served as Intake Counselors and had so much credibility for being on the other end of the tunnel.

Beyond my personal experience, I identified so much with the parents around me going through the same things. I remember the anguish of a mom who learned that her baby was given formula and that her precious gift of milk was tossed because the nurse didn't look for it in the fridge after the shift change. I remember that pain of a single young mom of 24-week twins advocating for her baby against the advice of the doc who advocated palliative care. (The baby came through OK, all things considered...). I remember watching an 18-year-old couple try to come to terms with the fact that their healthy-in-utero baby was born brain-dead because of an umbilicus defect disrupted blood flow during labor. I remember talking to the dad of preemie triplets the day after one had passed away. He was trying to grieve at the same time he was so grateful to see his other babies for another day.

My role as a NICU parent offered a different perspective, I think than that of the providers there. I think that perspective will help make me a better nurse.

I'm wondering, of all of you, how many have been on the patient side of the NICU experience in one way or another (child, family, close friend...)? Do you feel it's made you a better nurse? Has it made it harder to see the painful side of NICU?

Also, to each and every one of you, on behalf of all the preemies and parents that you've cared for throughout your careers, let me extend a heart-felt "Thank You." As I said in another post, you probably have a larger impact on "your" families than you even realize.

To those of you who love "your" babies, we knew/know, and our hearts were touched by your love for our children.

Blessings to you all.

[SteveNNP, MSN, NP]

Thanks, Beggar! I appreciate the encouraging words you posted. It will be an honor to have you join our ranks someday. You will be an excellent NICU nurse, especially with all the "flipside" experience you have had as a NICU parent. I'm glad to hear your little girl is doing great!

[cathys01]

I had a baby brother born when I was 18 years old (I'm now 37) that lived his entire life of 9 months in the NICU. He had numerous heart and lung defects and eventually died of overwhelming sepsis.

It definitely was a factor in my decision to become a nurse, and again when I decided to go to the NICU upon graduation. I have since changed to adult CVICU (hoping to become a CRNA) but I still work in the NICU about once a week...just can't give it up entirely!

[Finallyat40]

Those sentiments are very much the same way we felt, 12 years ago with our 27 weeker. I, now, because of that experience, am proud to call myself a NICU nurse, with three years of professional experience and 12 years of personal experience. When people ask me how my personal situation has affected my professioal situation, my answer is "I've done this from both sides of the isolette....I remember how it felt in my heart and now I know how to deal with them in my head". I can't imagine doing anything else......I love my tiny hineys!

Jamie

[justme1972]

I had preemie twins that spent their first few months of life in the NICU, and yes, they are my inspiration as well and it does give you a different insight.

However, my twins came out OK. I did see some very tragic endings when my kids were in. I also saw some wonderful miracles happen.

When I start working...my story may bring comfort to a mother whose child is doing extremely well and is bascially a feeder/grower...I still have to remember, that my story would be of no comfort, to someone who had less-than-a-perfect child...and wouldn't even dream of mentioning it.

[Sweeper933]

I had a sister who would have been a year older than me. When she was born (around 34 weeks...), my parents knew that she had a duadonal atresia. They later learned that she also had dextracardia. Because of that, she also had a lot of other heart defects (my parents can't remember the exact details - although I would love to know...). Pretty soon it became apparent that they would never be able to get her off of the ventilator, and they decided to take her off of life support when she was 17 days old.

Even though I never got the chance to meet her, she is my inspiration for becoming a NICU nurse (my older cousin as well). My parents always talked about the wonderful care she got while she was in the NICU, and how it was all of the "little things" that the nurses would do that make all the difference in the world.

So here I am today, a NICU nurse for almost 3 years now - working in the same unit that my sister was in... a few of the nurses/RTs were even working on the unit when my sister was there. I have a picture of her up in my locker at work, and when I've had a rough shift, seeing her picture reminds me of why I really do this job.

[EricJRN, MSN, RN]

I was a NICU patient and grew up hearing stories about the (mostly wonderful) NICU personnel who took care of us. Definitely influenced my career direction.

[fergus51]

As long as you have truly dealt with your issues from your time in the NICU as a parent, your experience will serve you well. We have several nurses who have had children in the NICU and they are often great at dealing with parents who are experiencing problems.

The only ones who do badly are the ones who overly identify with the parents. They can be problematic. We have one in particular who can't look after critical kids because no matter what the doctor says to the parents she'll tell them not to give up because she didn't and her daughter is fine. I honestly think she is incapable of seeing the situation for what it is, she just sees her daughter.

[faithful11]

As long as you have truly dealt with your issues from your time in the NICU as a parent, your experience will serve you well. We have several nurses who have had children in the NICU and they are often great at dealing with parents who are experiencing problems.

The only ones who do badly are the ones who overly identify with the parents. They can be problematic. We have one in particular who can't look after critical kids because no matter what the doctor says to the parents she'll tell them not to give up because she didn't and her daughter is fine. I honestly think she is incapable of seeing the situation for what it is, she just sees her daughter.

I cannot wait to finish RN school so I can work in NICU. I am a parent of 2 preemies (5 3/4 yo and 2yo) and truly admire the hard work and dedication of most of the NICU nurses and doctors. Although it seems to be a very fast paced, trying, emotionally challenging department, it also is a department where you can see the fruit of your labors and your care is truly appreciated.

I do feel that my experience as a parent of 2 NICU graduates will help me when working in that area. I believe a person's experience in ANYTHING helps them *and yes can hinder them* in dealing with others in the same or similar experience. For example, I was kangarooing my son and he was making his little nuzzling sounds, and scooting his head while BF etc...I said "awww, mommie's lil man is talking, what are you saying baby?" (mind you he was about 32 wks and of course he wasn't talking...it was just mommy talk). The RN on duty, felt she needed to come over from the neighbooring isolette to inform me that "No. He isn't talking mom. Those sounds are meaningless, all premature infants grunt and groan, its just something they do. It has no meaning behind it, he isn't even doing it on purpose." :angryfire Ummm, thanks for ruining the moment. I knew all that already thank you.

I feel that should I come across instances like that, or any other, my personal experience would enable me to just look over and smile, and not offer up a scientific explanation of development. I have had numerous coworkers and even friends/family with babies that have since been born into the NICU...and never once, have I used my experience (which was fairly easy, no surgeries/IVH/no machines coming home/no meds coming home/kids never have even gone to the hospital for anything other than normal doc visits) to paint what their experience could or should be like. I have never over-identified yet, or told them what it WILL be like. I can only say what my experiences were like, and believe me...that was all GOD.

I work in Forensic Psych Nursing, and believe me...I agree with the above poster---it makes it hard to do the job when the staff is over identifying with the patient/inmate. People have to remember "this is NOT your baby and this is NOT your life. This experience is NOT YOURS".