NICU to Home – Parent Stories

The challenges and rewards of coming home with a premature infant

I didn’t realize how much time everything would take. The first days he was home, when I planned to do something, I didn’t realize what if he got hungry. Now I’m starting to realize, I need to start getting ready early because if he gets hungry, I need time to sit down with him…I still don’t realize how long it will take me because I’ll still be late. I have to plan ahead to get his stuff ready.Mother of 35 week preemie, 1 month after discharge
That’s been the worst [going somewhere]. It hasn’t been the feeding. You can’t be spontaneous anymore. You have to check, is my bag all packed. I always do that at night before if I’m going somewhere. You have to get all your ducks in a row, and then it’s not quite so frustrating.Mother of 34 5/7 weeks preemie, 6 weeks after discharge
The attachment… I guess nothing could ever prepare you for it.  I had no idea the attachment that I was gonna have to him…It wasn’t until we brought him home that we, that I really felt like I was his mom, that we were a family.Mother of 32 weeks preemie, 1 month after discharge
Like she’s a miracle kid, you know, but something big is gonna be done with her life somewhere along the way.  And I just think it’s – I have an awesome responsibility for her.  She’s been through a lot.Mother of 28 week preemie, 1 month after discharge

Just him … the connection that’s so amazing and so natural…I could sit and watch him all day long…getting to know him – and as he develops  – the things that he likes – or the things that entertain him.Mother of 34 5/7 week preemie, 1 month after discharge
Well – we went from two people to three people – and two of us revolve around this seven pound being …I mean everything revolves around him at this point.  Things aren’t quite as spontaneous because they take a little more effort to plan.Mother of 35 5/7 week preemie, 1 month after discharge

What helps coming home with a premature infant

Having the nurse come in has been wonderful – because – especially when she was sick – and her weight wasn’t quite what it should be.  It was easier knowing that we were going to be able to check it and knowing that she wasn’t gaining well….with as little as she was able to eat when she was sick – I would have really been concerned about the weight gain issue.Mother of 30 week preemie, 1 month after discharge
Having the nurse come out once we got him home.  She came at 3 pm.  She couldn’t get here fast enough.  I mean to me, just like the next day it’s like all of a sudden, I had fifty questions.Mother of 34 weeks preemie, 5 weeks after discharge
I wish I had realized how much post-hospital care there really was…there is this fantasy around parent’s brain that says- when we get them out – we take them home – and everything is fine – you don’t expect to be bringing them back for three months to get monthly medication and doctor visits or eye exams.   You don’t expect that with a healthy baby like her.  I’m sure if you’re taking home a baby on oxygen – you probably expect it – but because she was doing so well – that was kind of a surprise to us.Mother of 29 week preemie, 5 weeks after discharge