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That sounds so hard! I don't have any experience, but would it help to have a project of some sort? Do you knit or sew or something else that you could work on there? Write letters to your daughter and/or son for the future?

Also, maybe audio books or podcasts for the pumping and driving time?

Finally, might it be worth it to you to stop pumping and just formula feed? I understand why you might not want to, but just wanted to offer it as a legitimate option for regaining some sanity.

Hang in there, you're doing a great job! Sending lots of good wishes.

My best friend is in a similar situation currently. Her baby boy was born in April and he’s still in the NICU. She was lucky enough to get him transferred to a closer NICU. Hang in there! Your baby will be home soon.

I’m sorry to hear about your son’s health condition and wish him a speedy recovery!

I did not see anything in your post about self care. Can you carve out some time for that? Maybe find a couple of hours per week to focus on yourself?

I know it’s hard. I barely did any self care during my son’s first year because I prioritized him. But in hindsight I think that was a mistake.

I hope he comes home soon!

I am so sorry you are going through this. We had a small hospital stay with DS when he was 10 days old. We ended up staying at the Ronald McDonald house and having relatives take turns watching older DD. The Ronald McDonald house was a life saver for us!!! I'd suggest looking into it if you have that option.

@snowjewelz: ha, yeah, I am peeking in here once in a while again.

@Ms. RV: I'm so sorry you are going through this. Hang in there. Is your NICU single rooms? Do you have a primary nurse? My son was in the NICU for 3.5 months. Our NICU was one big room, so I was able to talk to other parents and nurses. I'd recommend requesting a couple of nurses you are comfortable with to be your primary nurses. It helps to have someone to talk to and who is familiar with your baby. Are there March of Dimes staff or other support systems the hospital offers? I hope your son is able to come home soon! It's a lonely and exhausting time with baby in the hospital. I spent every day eating lunch by myself in the hospital cafeteria in between pumping and his care times. One day it'll be a distant memory, I promise. My son recently turned 2 and at the time I never imagined I'd ever feel that way.

@tiramisu: you are so right! D was in the NICU for 2 months, out for 1, back in for 2. He's almost 5 now and a lot of the memories are fuzzy now.

@Ms. RV: Hang in there! Just one foot in front of the other and try to remember that being there and being involved in his care is the best way to care for him even if its mind numbing I didn't stay at the hospital either because K was 2 at the time. I just read stuff (hellobee, news, kindle books) on my phone.

@Ms. RV: that's a great room! Very homey

@Mrs. Tiger: Wow D is almost 5 already?? How is he doing? I know it's so weird how the NICU memories get fuzzy after a while, when at the time it was all consuming.

@Ms. RV: Glad you got to switch to the nice room! I agree with @Mrs. Tiger, just keep putting one foot in front of the other. That's seriously how I got through it. Everytime I thought how am I gonna make it through another couple months it gave me anxiety. I really had to take it day by day. Dont put too much pressure on yourself to be there all the time. At the time my son was in the NICU, my older DD was barely 2. I tried to keep her schedule as normal as possible even tho it meant not being at the hospital as much as I could have been.

@Ms. RV: C has always been tube fed and I am not sure if he ever really showed hunger cues. The dietician and Nephrology team closely controlled his feeding schedule and volume due to his kidney failure, so I really didn’t question their directions besides trying to get him off a cow milk based formula or if I felt like he wasn’t tolerating a change they made. Are your son’s Drs more concerned about volume or timing? I would ask about ways to be able to feed your son sooner if showing hunger cues. My biggest frustration with the medical system is Drs orders and how little they can be changed as needed. I understand why, but it makes some aspects of parenting so difficult.

@Ms. RV:

@Ms. RV: yay yay yay yay yay! So so excited for you and your family! I hope everything goes just as smoothly as possible.

@Ms. RV: yayyyy that is great news!!!