The Next Time Lightning Strikes (or, how to survive someone surviving NICU)

Preface: I hope this post will be helpful if, somewhere down the road, some of you are once again in close contact with a family struggling through the NICU experience. Perhaps some of this will apply to any medical crisis, or another stressful experience.

One of the things Chad and I talked about in Seattle was how hard it is to talk to people about Alicia and the whole experience. And? Well, there are a number of reasons. To talk about it takes a lot of emotional energy. However most people don't give a response that seems to acknowledge that. Even if they did, it still gets very draining to talk about the situation again and again. It's still hard to talk about it now. I'm a little less emotional about it, but people don't expect me to still be struggling with this. So I might say a bit and then have to pause, and the other person thinks I'm done talking about it.

So what do you say? Try to say things that don't negate the amount of pain the other person is feeling. "I'm sorry," is a good one. "I would carry this burden for you if I could." "I'm praying for you." "I pray for you everyday when I . . . " "My Bible study is praying for you." "I was reading on the web about preemies and . . ."

Good Questions: "How can I help?" "How often do you want us to call you?" "When can we come visit?" "What should we pray for?" "How are you doing with God?"

Avoid making promises: "It'll be okay." "You're almost there." "One day you'll forget all about this." These promises make it sound like the current pain is somehow insignificant. These statements shut down conversation. The parents have already been disappointed in their hopes for a healthy child. They aren't about to buy into any more false hopes. Instead, acknowledge the pain and don't change the conversation. "How are you dealing with the pain and stress?" "How is this affecting your marriage?" "Are you able to cry?" "Have you let yourself cry at the bedside yet?" If you are just too squeamish when it comes to talking about pain, fine. Perhaps you'd prefer, "When was the last time you laughed?" "What brings you the most joy these days?" For indeed both crying and laughter are great stress relievers.

Somehow even saying things like, "You are handling this so well" makes it harder for the parents to say, "No, I'm not. I'm just barely pulling through each day."

As for what to do and give . . .
Gifts:
* a disposable camera to keep by the bedside
* mylar ballons for the hospital
* flowers for the house (not allowed in NICU)
* preemie clothes
* pictures and cards for the bedside
* quality hand cream for the parents (think excessive handwashing)
* fun hand soap and hand sanitizer for the home
* Mother's Milk tea (for a breastfeeding or pumping mom)
One of the hard things about the experience was the lack of celebration and the inability to show off my girl. Gifts are just great.

Ask to visit. I didn't want people to visit at first. I didn't want people to come in and see my little alien. I didn't want people to come and say, "Oh my God!" She was my daughter. She was my baby, not some strange life form being kept alive by tubes and machines. One of the first friends who did come to see Alicia was just perfect. She ooh'ed and aah'ed over Alicia. "Oh look at her perfect little feet! Oh I just love those feet! Oh she looks just like Toby! Don't you think? If I stand here on the other side of her isolette will you take my picture with her?" I could start to cry just thinking of that visit. It was so healing for me that, whether or not my friend was willing herself to act like this, someone was acting like this was a real baby to be valued just as much as any other. So visit. And talk about the baby the way you would any other. "Does she sleep through the night?" might not be the right question, but how about, "What do you usually do when you come to visit?" Talk about the baby and the family, not the hospital, machines, and monitors. Try not to look around the room. Just pay attention to the baby, the way you normally would. Ask to take a picture. Get it developed and give prints to the family. Betcha the family hasn't taken the time to make prints themselves, as much as they'd like some. Pray for the baby. And remember, "she's so big!" not "she's so little!"

It sounds like a little thing, but when you visit, the importance of hand washing cannot be overstressed. Our friends were wonderful about being cognizant of avoiding infection, of telling us if they had been sick, or around people who had been sick, or across the room from someone who had heard about someone being sick... To this day, if a friend washes their hands before touching Alicia without being reminded, I feel so incredibly loved.

What else? Anything and everything. Money's okay. I think we may spend over $13,000 on medical expenses this year. Some people gave us money. My dad bought us a book about preemies. My stepmom and stepsister bought Alicia preemie clothes (size 2lbs). Lots of people did different things.
* Maybe you can do taxes.
* Or clean the house.
* Run errands.
* How about switching cars for a day so you can wash their car and get the oil changed. In the midst of such stress, the idea of taking time to wash my car was overwhelming. It's all the little things.
* Meals are always great. Because I spent so much time in the hospital I didn't see many people for months. It was lonely. Meet the family at a restaurant near the hospital. Or bring dinner to the hospital for everyone to share together. We had Thanksgiving there.
* Get pictures developed for the family.
* Help them start a blog.
* Help get the nursery ready at home.
* Get the family in touch with others you know who've been through a similar experience (like us).
* Provide childcare for the siblings. A consistent schedule is ideal. Those poor kids need some extra stability.

Say things like, "I'd like to make a meal for your family. Should I bring it on Tuesday or Wednesday? Would you like me to bring it to the hospital or your house?" instead of asking the open-ended, "What can I do?" You can ask that if you like, but if the family is too overwhelmed to think of anything, make the suggestion yourself. You might say, call me if you need anything, but you might never get that call. If something occurs to you, just do it. And of course, if the family tells you no, then you should honor that too. Even receiving help can sometimes become overwhelming. But not nearly as much as it not being offered.