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No advice, just support - this sounds very stressful. I hope you’re holding up ok.

We spent a month in the NICU with LO2 who was 6 weeks early. Echoing what the previous poster said, out NICU had a pumping room, with hospital grade pumps. Each mom got a sterile kit of pump parts and labels - we were just responsible for supplying milk bags. We were permitted to store milk (up to a certain quantity) in their fridge and freezer and they would pull from that supply to feed the baby as needed - whether through a feeding tube or bottle. It wasn’t ideal recovering from a csection sitting bedside in the NICU but it honestly wasn’t terrible. If you’re having a c section, my advice would be to stay hydrated, take your pain meds consistently and on schedule (even if you feel ok, sitting all day catches up with you), and wear an abdominal binder. Get to know your nurses and the routine of your NICU. Don’t be afraid to speak up, ask a million questions and challenge the team if you think something should be done differently. We didn’t go through anything as serious as what you’re facing, but I found the feeling that I lacked control over my newborn’s care - at a time when I was supposed to be taking care of her 24/7 - enormously distressing. Becoming confident enough to voice my opinion, not be passive in her care and be as hands on as possible, made me feel more like her mom, as opposed to be visitor, if that makes sense? Most of all, show yourself some grace. It’s hard. Doable, but hard.

I would inquire about RVs. The hospital I delivered both my kids at has a level 3 or 4 NICU and because it’s the major one for the region, people travel from far away to get treatment there. They allow NICU parents to keep RVs parked in the lot so it’s easier to go back and forth or trade off with a spouse. You might be able to find someone in the community who has one sitting in storage they might let you borrow or even ask a local RV rental place if they can give you a deal based on the circumstances.

I delivered vaginally, and I wish I’d sprung for some kind of padding to sit on while spending time with the baby in the NICU. So much sitting.

I’ll also echo what others have said about how the hospital provided everything I needed for pumping and also lactation consultants, even social workers to make sure I had all the resources I needed.

We had a seven week NICU stay with our first that included a transfer to a larger hospital for surgery 3 weeks in. We are anticipating similar health concerns for LO2 due in March so here's a few of my lessons learned that I'm hoping to do better on this time! We're planning to deliver at a hospital down the street from this larger hospital this time (as long as baby doesn't decide to come on his own before then!) to avoid a big transfer like we had last time.

Ask for help from the LC right away with pumping and start pumping super regularly on day 1. (We had SO many interruptions those first few days from social workers, hospital billing, etc. etc. not to mention family and friends. This time I'm not going to be shy about asking them to leave or come back if I need to)

Stay super hydrated. (This was hard for me because at NICU 1 I was allowed a drink bedside, but the closest restroom was way down the hall and required me to check in and out of the NICU. NICU 2 didn't allow any drinks at all bedside, not even water. I'm going to protest that this time if needed! I definitely thin this played a part in my low supply.)

At our second hospital they gave me a set of Medela parts to use with the hospital grade pumps they had in the pumping room. I'm going to push harder to get more skin to skin if baby can manage and also opportunities to pump bedside.

This hospital also provided meal tickets for nursing/pumping mamas to use in the hospital cafeteria. 2 per day. I was able to get breakfast and lunch or get lunch for both me and DH which was awesome. When LO had surgery and had a room, they would bring me a tray to the room (I could order what I wanted). So definitely ask about meals.

Both NICUs we were at had a small number of rooms where mamas or both parents could room in with baby. They are often intended for parents to get a few nights in with baby closer to discharge time.

I"m also going to try to adjust my schedule better to be there for rounds. I found this hard at times because the doctors don't always come at a consistent time, but there is a general window. I was never up early enough to get there for surgical rounds. They came super early. I usually saw a surgical resident in the late afternoon who would come to check on LO.

I don't know what recovery for you was like with your first, but I had a lot of tearing and I assume I took a lot longer to heal because I was simply up and moving a lot more than a mama who was at home. Definitely have comfy layers and something to sit on. Hospital chairs aren't the most comfy.

We brought clothes from home (sleepers with snaps are great once baby can wear clothes because the wires etc can slip out the gaps), books to read to baby, a FisherPrice soothing seahorse we were gifted (baby loved!) and bought him a travel musical mobile after a few weeks. These things made him seem more like our little baby!

Call anytime you need an update. Funny story, they will have a code or password, most likely. My DH said one night I asked him for the password to get into bed. I often woke in the night to pump, have a snack, etc. and it helped me to hear from the night nurse how he was doing.

I'm happy to try to answer questions or be of support to you any way that I can! Ours was not a heart surgery, but a big surgery and I know how scary this is. We're preparing to do it all again, more than likely, so it's all fresh in my mind.

@ineebee: The donut pillow! I didn’t have a NICU stay but I think a donut pillow should be given to all moms after a vaginal birth. I ordered one from amazon last time for my hospital bag.

@Ms. RV: no not crazy at all. We live five minutes from our home hospital and I didn’t leave until they made me last time! My plan was to stay until midnight the day of discharge but then I had to leave at like 8pm because the hospital pharmacy was closing and something about getting my pain meds and once I had them I needed to leave. So I think it’s a great idea to stay as many days as insurance will allow.

@ms. rv so my situation was a little different - my LO was born at term, didn't go to the NICU, we were discharged home after 2 nights in the hospital. After 1 night at home, he was re-admitted to the hospital for a week, although it was in the pediatric unit, not the NICU (apparently they don't re-admit to NICU).

Anyway, this may not be NICU-specific, but I was in really rough shape (rougher than I expected) after my vaginal delivery w/tearing and a huge episiotomy. There was a lot more standing or sitting in a hard chair in the hospital and I was in a lot of pain the whole time. My legs and ankles got super swollen and honestly it was just physically really painful and uncomfortable the whole time. So to the extent possible - try to rest laying down or with your feet up, which is tough with a kid in the hospital/NICU. Definitely have a pillow, donut, etc. to sit on.

Also, since we were admitted sort of unexpectedly from the ER, I wasn't really prepared to stay and didn't have a ton of my stuff with me. So, having postpartum stuff like pads, Dermoplast spray, witch hazel, big underwear, spray bottle, extra appropriately sized clothes for a few days postpartum, extra jacket for the hospital (it's cold), toiletries (toothbrush, face wash, deodorant, lotion, makeup, contacts, glasses, etc), etc. - would have made it a lot easier. I was sending my mom and my husband home to get random stuff, they didn't know where my stuff was, it was just kind of a mess. I am sure you'll be more prepared since you know you're going to NICU. Also any postpartum meds you may need - for me this was Motrin and stool softeners.

Also, having some snacks/drinks on hand for the room was helpful. I felt so crappy the first week with not sleeping, in pain, being in the hospital, etc. I just couldn't eat a lot and it was nice to have some water, crackers, fruit, etc.