There comes a point in a long NICU stay when the nurses have said about six times that you’re the “most intensely committed parent” they’ve seen in a while, and you’re beginning to understand that this is not necessarily a compliment. Even though they’re trained to deal with frazzled parents, what this means is that they’d really appreciate it if you bathed and could say more than three sentences without one of them being “Oh my God!”
It might be time for a brief vacation from the NICU. Of course, at first glance, this idea sounds awful. How can you go have fun while your child is in intensive care, like you’re Nero fiddling while Rome burns?
But if your child stays in the NICU for a long time – ours was there 5 months – you will find that you don’t really have to be there every day. Anyone in intensive care isn’t “fine,” but our child eventually advanced to the point where his condition was no longer pass-out-on-the-floor shocking, and he still needed to grow for a long time. If your child is in this state and the stress of hearing your baby’s desaturation alarm (or the neighbor baby’s desat alarm) is wearing you down to the point that your dog is the sanest member of your family, you should think about a two-day vacation someplace scenic within 100 miles. Go ahead, take advantage of the $2,000 / day childcare that insurance or Medicaid is paying for. Just keep the car’s gas tank full in case you need to high-tail it back to the hospital.
We did this a couple of times while in the NICU, and can pass along a few bits of advice:
Tell the staff you’re going, and that they can call your cell phone for anything, of course, but if it can wait until Monday, that would be wonderful. We did this, and placed two calls a day to check in on Gabriel. The staff honored our request and did not call us, but we did get one call from the social worker telling us about an event at the hospital we could attend. There’s nothing wrong with that, but getting an incoming call from the hospital’s phone number made our stomach do flips. (And it still did two years later, even if Gabriel was in our arms when the phone rang.) We didn’t complain about the call, but had to spend a little while doing breathing exercises.
Double-check the breastmilk supply at the hospital before you go. Most hospitals have quite limited freezer space for this. I went on a two-day bicycle ride with a group of 800 riders, and was cruising along at a good speed 15 miles in to the first 105-mile day when my cell phone rang. They were out of Miri’s milk and were going to switch to formula unless someone showed up in 30 minutes with more milk. This would be a formula feed for the first time in Gabriel’s life at an age when he was especially vulnerable to the dreaded necrotizing enterocolitis. “What do you MEAN???” I shouted in to the phone as bewildered cyclists passed me. One nurse had told us there was enough milk but hadn’t looked and then the next nurse didn’t think to look until… Argh! I called my wife (who was some distance away doing something else) and offered to lock the bike to a tree, call a cab, go to the church where we had some milk stored in a freezer, and then go to the hospital. In the end, we just accepted that he’d have formula that day, which didn’t cause more vomiting than average.
Come up with a breast pumping plan that’s comfortable. On one short trip to a performance for Miri’s folk band, she took her fancy breast pump provided by the hospital, and my dad lent us an electrical converter that allowed it to be run off the car’s cigarette-lighter plug. Miri had already developed an intense dislike of the pump’s plastic chest antlers, but that experience of sitting in the driver’s seat and getting the wires and tubes arranged correctly was so uncomfortable it made her swear she would never do it again, and she decided she would rather use a hand pump any time we were in the car.
Bring hand lotion, and use it once an hour as you try to undo some of the damage caused by hand sanitizer.
Expect only a little stress relief, but it is still worthwhile to get away. The present and future challenges of your child will continue to weigh on you so much that it prevents you from engaging in the environment around you. You’ll be able to feel wind go by at a temperature and humidity not controlled by the hospital’s ventilation system, and you’ll see time move forward with the movement of the sun rather than the shift change of the nurses, but it won’t relax you the way it should. But seeing some normal life will remind you that it will be there for you when you’re ready.
On my bike ride that got interrupted by the frustrating call from the nurse, I felt useless as a father. I wanted to come up with a way to fix that. I kept pedaling in hopes I could think of some purpose to my time in the NICU, some way I could “pull for” my son, who felt like a science project managed by the nurses.
I never came up with a way I could help my son, but as the mileage climbed and my pain increased, I thought I could at least try to be cheerful about the pain, which is what Gabriel seemed to be doing, too.
Tell your preemie about what you did. Hearing adults talk is beneficial for babies, but the NICU does not provide much of that kind of stimulation. Tell your preemie that he or she will get to go with you next time and that your family will get on to the next stage of your lives.