I know this is a little late..but there are things I'd like to share. So many people have questions and I figured if I blog, then they will get their answers. So pardon my tardiness but I will get the entire story out, eventually.
A day in our lives at CHOP consisted something like this.
6-7 am- Wake up, Derek would go find towels/ wash cloths so we could shower. He'd go shower and I'd pump. (One morning Derek went to do the laundry while I cleaned up etc)
7-8 am- We'd pack up all our bags, seperate the clean and dirty clothes, load everything on our "hobo cart" (a stroller/cart thing that we found in the parking garage the night we arrived at CHOP that we used to tote all our belongings around) and take the cart to Rowan's NICU room. When we got to the room we'd put on a gown and gloves, push the cart into his room and then help feed him, change him, hold him etc.
8-9 am- the Attending Physician would come around and get information/updates from the nurses, speak to us about any upcoming tests or returning test results, procedures and ask us if we had any questions. Then he'd give us a run-down of the discharge plan.
9-11 am- I'd pump again. We'd request a room for the night. We'd have breakfast down at the cafeteria and buy extra things for snacks/lunch. (We never ate lunch down there- actually most of time we didn't eat anything for lunch at all)
11-5- We'd visit Rowan, do research on the computer, ask lots of questions, meet with the dermatologist, the lactation consultant, I'd pump, we'd feed Rowan, get instruction on how to bandage, do the actual bandages. By Tuesday we started doing the bandages without the nurse because they were pre-occupied with another baby and we got impatient. Then we'd get our sleep room assignment for the evening. We'd sometimes go take a nap or just go relax for awhile. I was retaining lots of fluid in my legs so I had to get them up as often as possible. The fluid actually started to seep out of my legs. :-/
5 pm- throughout the night- We'd spend as much time in the NICU with Rowan, I'd pump every 3 hours (except one 6 hour break during the middle of the night) and sleep, Derek would sleep and occasionally take the milk to the NICU for Rowan. I usually went though because then I'd get to feed him or check up on him and watch him sleep.
The next morning the entire process would start again. By the third night we had a routine, I would scarf up towels before we went to bed and extra pillows so I could prop up my feet throughout the night. We even watched TV the one night. :-)
I think the most scary part of being at the hospital was the fact of not knowing what the next step would be and whether or not we would get a room for the night and would have to spend big money at a hotel and not be right down the hall from our son. The other scary part was that after a few days the routine became almost like second nature.
The day we were told that we'd be discharged was sort of surreal. We were so excited but also scared as we weren't going to have doctors and nurses a hallway away anymore.
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