NICU experience

mrsjrmiller

I have been invited to be on a family advisory counsel for one of the NICU's Ethan was at. I am very honored to participate. I will be going to my second meeting next week. I am to tell our story and experience at this NICU. As they get this program up and running, they are only going to involve one family I can really play a role and be heard. It may grow in time but for now, I am it... which again is an honor, but also a little pressure because everyone's experiences are so different.

I know that we all had different NICU experiences and I have a lot to draw from mine but it has also been a year since we left and emotionally it is hard for me to "go back there"... especially because I am pregnant again. But in my reflection, I wanted to ask you ladies what you would tell the panel (neonatologists, nurses, admins, social workers, etc) if you had the opportnity. 

The lady that I am working directly with said they are very scared because they are opening themselves up to criticism and airing their dirty laundry... but in order to raise the bar, they really need to look at what they can do better and become more family centered.

So, if you do not mind, tell me what you would mention in this situation. I am hoping that some of your suggestions will be relevant to my experience and jog my memory. If nothing else, they are hoping to take this program to a higher level and use it as a stepping stone for other NICUs (they apparently attend nationwide meetings annually to share best practices, etc).  Any input and help is appreciated. I think I am a little nervous and want to make sure my presence is impactful!

KellyMichelle

I would have wanted more support in breastfeeding.  I felt like they were always trying to push formula and they waited until very late to let me try to BF.

Encouraging parental involvement, our nurses were very good at this, but I know that some aren't.

That is all I can think of right now.  It is awesome that you have this opportunity.  I know you will do great!

kamcfarlane

DS was a feeder/grower. i'm not sure if other NICUs are the same way, but we had a very difficult time figuring out exactly how they transitioned him to all nipple feedings. one nurse would tell us that he had to do 3x/day then 4x/day for 2 days, then every other, then all for 2 days. the next nurse would say he'd go from 3 to all if he could tolerate it. and then the neonatologist would tell us they should be trying to nipple feed at every feeding. i think part of the problem was that he was there over christmas and so they had nurses from the mom & baby department working in the NICU and it was just easier for them to tube feed him. under any circumstances, when you don't have any control over the most important thing in your life, it would be great to at least have an idea of how things would proceed. and for everyone to be on the same page. i was positive he would never come home because every nurse expected something different and the neonatologist expected something even more!

i know they're hesitant to give definitive answers to anything because all babies are different, but a general idea would be SO helpful to control freaks like me!

thanks for taking on this task! i wish our NICU would have done something like this!

mrsmikey

I also wish we'd gotten more BF'ing help.  Our NICU was very pro-BF'ing, but I still didn't really know what to do or how to do it.  They set me up with a pump and were all about me bringing in breast milk, but they never really showed me how to nurse.  Even though I had taken a BF'ing class it's totally different with a preemie.  An LC called me at home to check in on us, but I never met with her.  I'm sure if I had been more proactive there would have been alot more support available to me.  But I didn't know to ask and they didn't offer it.  I never was able to get DS to nurse and I hate that, because I think we could have done it if we'd had the right support.  If I knew then what I know now...

And when DS graduated into the level II nursery, the communication went out the window.  They were great in the level IV, but sucked in the level II.  I'm not sure why, it was the same doctors and the nurses were great, but we felt like we never knew what was going on, and really had to get ugly with them to find out sometimes.

lemen99

-We would have preferred more consistency from nurse to nurse - that's hard though because everyone has their own way of doing things.  One example would be with feedings - some nurses didn't want to wake him up, some did, some were more forceful with the bottle than others.  Some would offer a bottle after nursing, some didn't want to.

 -Most nurses did a great job at encouraging us to particpate (take temps, change diapers, change clothes) but some of the nurses would do all this, knowing we would be arriving shortly.  It's like they were trying to help, but I think we should have done it.

mek10976

I would have liked to know what bottles/nipples to use that were comparable to the NICU ones.  We had to go through several different kinds to figure it out.

I also think having a "hang out" room in the NICU for parents to spend some down time between feedings, use the internet, meet other parents, etc. would have been nice.

mrsjrmiller

Thanks guys! this is great - definitely jogging my memory and giving me a good list of topics. Keep it coming!!!!

 

mhop

One of my favorite NICU moments was when one of the nurses asked MY opinion about something.  I didn't know what to say and automatically went to defer to her opinion and she told me that I was the one who knew my baby best b/c I was the one there every day, I was the one with her the most.  Needless to say I promptly burst into tears because she was right but I had just become so unsure of myself as a mother and had to re-learn to trust my motherly instincts.  And it wasn't anyone's fault, I think it's just a by-product of having a baby with special healthcare needs that I knew nothing about.  But, if more nurses could have that attitude and communicate that to mothers, it could be so much more empowering for the mothers.

Also, our NICU had regular support meetings, but they didn't have any opportunities/place/etc for parents to meet each other and talk.  In fact, our NICU was so worried about privacy (they discouraged even looking at other isolettes) that it discouraged the parents from getting to know one another.