What is your experience with the NICU? Give & Get Support

Honestly just time helps for when they sleep at night. They get stronger every day. Having a baby cam with a good zoom and good audio helped too when it got to the point that she didn't sleep in our room. I still look to see if she's breathing sometimes and she's almost 4 but I think it may be more out of habit then fear at this point. What did everyone else use at night to feel better?

Hello! I delivered my daughter Ella in July 2019. She was born at 23 & 0 and stayed 142 days in the hospital. Before her delivery I really didn’t know babies survived before 24 weeks. I wish I had done more research when I started having complications, but I really thought we would make it much longer in the pregnancy. I still carry a lot of guilt for not giving her a healthy pregnancy. I’ve always been a laid back person, but I have a developed anxiety since the NICU. Time and talking about it does help though!

Wow! What a great story! Truly amazing! These babes are out to take on this world! Ready to do big big things!

Welcome to Connect @stephmingus . That is quite the hospital stay! She is so strong (and you too)! My wife has the exact same feeling of guilt over our daughter being born a preemie (31 & 4) and growth restricted. I'll always remember her crying and saying "I just couldn't protect her. I was supposed to protect her." It's tough to feel that it isn't our fault. I was also a more laid back person, I still am for the most part but did pick up a lot of anxiety along the way though mostly around health, I've just been trying to compartmentalize it and it has faded some as time has gone on. It looks like Ella is about 15 months (11 month adjusted), how is she doing overall? Are you getting help for anything?

Wow, @stephmingus, 142 days is a long time to be in the hospital! What are some ways you have felt that have helped reduce your symptoms of anxiety since delivering Ella? Have you been able to connect with other parents of infants in the NICU?

@TonyHart87, @lisa0713, @slpb, do you have any lingering symptoms of anxiety from your NICU experience? If so, what has been the most helpful for you?

The anxiety has gotten better over time but it's definitely still there (and probably always will be). It's that sinking feeling that something else is bound to go wrong. I try to take a step back when I'm feeling anxious and realize that all kids have issues of some sort, not just preemies. Have to focus on what we can control. It does come back in full force if they need to be hospitalized though. We're doing the best we can to avoid COVID, especially because of her weaker lungs. She's almost 4 and is amazing at keeping her mask on when do have to be in a public space.

@lisa0713 , @slpb: do either of you still have that feeling that the other shoe is just waiting to drop and something go wrong with your preemies?

I remember feeling more anxiety when my son was younger (as soon as we got home to about 2 years old). He had an inguinal hernia a couple of months after we got home from WI and I thought "you have to be kidding me, we have to go back to the hospital again". Looking back that anxiety was related to us living in the boonies and having to travel once again to a bigger city for services.

My husband (though he doesn't admit it), was the one who had anxiety. His evening routine included staying up until midnight every night and checking on our son before going to bed to ensure that he was breathing. He still does this 6 years later.

I'm glad it all turned out @slpb with having to deal with a hernia so soon after getting out of the hospital. That panic is definitely familiar. When we were back in the hospital with ours and she was put back on oxygen 13 months later due to RSV. I can't imagine living out in the boonies like that though! I know a bit about the WI healthcare system since my wife is from there. Now we literally live 10 minutes from Mayo Clinic in Rochester and we had a hard time. Preemie parents are tough. I hope your husband finds some more peace (and sleep) as your son gets old. We still have a baby camera in her room and she's almost 4. It is nice to just check it before we go to bed. Have you and your husband had talks about anxiety over this @slpb? I've found that they help a lot, even though most of them start with "I know this isn't logical but I'm still worried over..."

Does anyone have multiple kids, I'm curious over how that anxiety has/hasn't spilled over with your non-preemie kiddos? Or if you decided to not have more kids because of it!? @lisa0713, you mentioned that Kayson was an "easier" preemie situation. Have you noticed any difference between them? Ours fluctuates for our non-preemie between "oh he's fine" most of the time to sudden grips of terror over weird things sometimes.

This discussion is an older one, but lot of great information from those who shared. I volunteer in NICU and see the great staff in action weekly.

I just read an article about the NICU transport nurses at Mayo Rochester. I have seen babies arrive in the isolette (a clear, heated crib) and all the equipment but never understood what was all involved in transporting a pre-mature baby. This article tells about who and what the NICU Transport team is.
https://intheloop.mayoclinic.org/2024/06/06/nicu-transport-nurses-ensure-a-safe-arrival-for-mayos-tiniest-patients/
Even though an older discussion, if you have had a baby in NICU or transported by a NICU transport team, please share your experience and advice to parents who may be facing this situation.