Okay, I’m actually feeling pretty good right now, but there are really are parts of NICU life that really drag me down.
For example, I just called for an update, and I find out the kids are being moved… in 5 minutes! Now, this is good news since it means they are progressing to the less intensive nursery, but why wouldn’t someone let me know that was possibly happening? What are the implications? Is it the same medical team? I have no idea because no one has told me that this was in any way imminent, despite the fact that I attend rounds almost every day.
Another annoyance: not being told that a surgery is scheduled in their room (yes they do surgery IN the NICU) which means I can’t get in to see the kids all afternoon. Now I get that there are emergencies and sometimes no time to tell parents. Also, I would certainly want others kept out if they were doing procedures on my girls. But it’s a little annoying to go for lunch, come back 15 minutes later, and then be barred from the room for an unspecified amount of time with no one giving any update or announcement when the room is open again. I spent an hour in the lounge and then another hour watching HGTV in the pump room before realising that they had accidentally left the “no access” sign up long after the surgery was done, by which point I had to go home to the other two.
Not enough chairs – there is not a big chair by every bedside, which means that you have to race around finding them, and at ‘peak’ snuggle times, there sometimes aren’t enough to go around.
Rounds – sometimes I’m there snuggling my girls, and the team is doing rounds, and no one addresses me. Now, to be fair, this probably is the minority of occasions, and certain doctors are very good at touching base, at least to let you know “no big changes today!” I also feel like they are a bit more cautious with me since C’s diagnosis, since I’ve said I need information parsed out to me slowly. But still – if I’m there, talk to me. The nurse can also make a huge difference as the best ones makes a point of including you. I’m there every single day watching their progress and counting their “desats” or “bradys” – what I think matters!
One bathroom for every single parent and visitor in the area. ONE!
Now, just so I don’t end on a negative note, let me try to think of things that are good…
The nurses who coo over the babies, and pick out matching linens, or cute clothes for them, or who go above and beyond in making sure you feel comfortable. The TV in the pump room. The quilts they deliver for every baby. The fact that they take my 2 a.m. calls with a lot of patience and explain exactly what’s happened over night. The fact that we can drop by at (almost) any time and the nurses will train you how to change diapers through an incubator, or clean your baby’s mouth, or listen to your 5-year old talk about Ninjago lego endlessly. And, most importantly, the fact that if it weren’t for the NICU, my girls would not be here.
Also, yay to my husband who has talked me off the ledge many times in the past two weeks.