Leaving NICU anxiety

[annieoakley]

We might be moving from the NICU to the “floor” and I’m having crazy anxiety about it. I just want to go from the NICU to home but I know it’s not possible she still has more to go. We’ve been in the nicu for 3 months now. I have two toddlers at home and I’m doing my best being at 2 places at once. The hospital is an hour away and it’s not always easy to spend long periods of time there. But I’ve felt comfortable leaving my baby in the nicu alone bc I know she has a one to one nurse. I know all the nurses and I know how everything works.

Im worried about not being there with her 24/7 without having a one to one nurse. I can’t be there 24/7 because I have two toddlers at home. I don’t know how much longer she’ll have on the “floor” I’m having a family meeting tomorrow where I want to ask questions and express my concerns, but she’s going to be moved regardless. Anyone have a similar experience? Anyone have questions for me to ask? She’s on oxygen, g/j tube, and she’s weaning off her morphine etc.

 

[arndo76]

@annieoakley Our hospital doesn’t allow babies on breathing support to leave the nicu. I’m surprised that your hospital doesn’t consider that critical care.
We are about to be in the same boat as you. Our little one is stable just waiting for a 2nd brain surgery and they are talking about bumping us to the floor once she is big enough and it is so scary. Definitely an added stress.
Best wishes to you! Sending good thought to you and your little one.

 

[annieoakley]

@arndo76 Thanks. shes not on Cpap just oxygen so I guess she can get that anywhere. I’m just freaking out but I’m realizing that her next care will be with a new set of people, a different area of the hospital, less eyes on her.
Thank you for responding. I feel like I’m so isolated. Good luck on the next surgery. That walk to OR is always a long one for me

 

[psydaley]

@annieoakley We got moved to a room two days before discharge day. We had to because he was coming home on oxygen. Luckily I was able to stay the home time, but everyone let me know that the nurse that was handling the nicu rooms ( I think it was 4) worked in the nicu and if I ever needed to step out she would be there.

 

[annieoakley]

@psydaley Ugh yeah I wish I could be there the whole time but I just can’t.

 

[lutheranrose]

@psydaley How is it to go home with the oxygen? This is where I’m heading too with my son (born fullterm but with lungs full of meconium, we’re on day 23 in the Nicu and not quite home yet but heading in the right direction).

 

[psydaley]

@lutheranrose It really isn’t a issue. We did move our bedroom to living room because that is where the oxygen is at. It takes a little bit longer to get out the door because we have to disconnect from the big one to the smaller one and the smaller one is about 10 pounds. Find some good tape. I ordered some cute ones off of Amazon. We make sure no one that smokes come around him. No gas stoves or anything like that. You can message me if you want too.

 

[sleeptastic]

@annieoakley So the NICU ours was a little different from this. There are 4 levels. 1 = the nursery where all term babies with no issues. NICU 2 is "step down" = 1 nurse per 4 babies, a charge nurse and 1 doctor doing rounds, no breathing tubes, just open cots with babies on either feeding tubes or bottle feeds, monitors and lots more space for parents to come in and spend time there. NICU 3-4 were combined, All the babies there were either on Oxygen, CPAP, Phototherapy, in incubators or warmers and there were more nurses per baby, and several doctors doing rounds.

We started out in the NICU 3 side, then after a week and a half she went to "Step Down", then a few days after that she came home. Total NICU stay 14 days.

The questions I asked were mostly about what monitors she'd be hooked to, who would be her main nurse when they were on shift, and how long her wake windows were. If her wake windows are like 45 minutes with 20 minute feeds, there isn't much of an issue. She'll sleep most of the time anyways and of course, there are monitors. Just from my own experience, fussy babies were held and cuddled ALL the time in "step down" to help them calm back down.