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Sunday, October 01, 2006

Alice in NICU Wonderland (Children Mentioned)

Going to a NICU reunion is sort of like being Alice and getting a yearly trip to Wonderland. Except that the Wonderland contains things like isolettes and heart monitors rather than tea cakes saying, "eat me." And doctors and nurses rather than oversized rabbits wearing top hats. So I guess it's not really like Wonderland at all.

But that's the only way I can describe the NICU reunion to other people. Life continues on the outside, but when you're inside the NICU, time seems to stand still and you're in another world. That time you spend with your child in the NICU is so intense and emotional, that there is a strange part of you that almost doesn't want to leave when you're finally released. I mean, you do want to leave. You want to run far from the building to the safety of your home where everything feels normal and healthy. But those intense relationships you've formed with your child's caregivers are severed except for this one time every year when we go back for the NICU carnival.

Our children were born prematurely with IUGR and they spent three weeks in the NICU. Which was one of the worst times in my life. I still sometimes have panic attacks when I need to drive by the hospital. Full on, can't breathe, panic attacks. Looking back with years of perspective between myself and the incident, I can see our stay in an entirely different light. It all worked out in the end. But while we were there, I was constantly panicked. No one could tell us when we would leave. No one could tell us when we would get off the heart monitors. Or if there would be problems into the future. Sometimes, if I'm at the hospital, I'll swing by the NICU to say hello and I'll talk to other parents who have children currently in the NICU. And I know that nothing I'm saying is helping. But I say it anyway. These parents will never calm down until they know that their child is out of danger. A stranger telling them that it could all work out in the end, that their child will put on weight and grow and be healthy years down the line isn't a guarantee that it actually will happen that way. But now, with perspective, I can see that statistically it does. But when you're in the middle of it, you don't know which side of the statistic division you'll be on. So you worry.

Then why do we go back to visit? Because I want the doctors and nurses to see how their hard work paid off. I want to see the nurses and hear how they've been (did N's daughter get married to the jerk? Were M's IVF attempts sucessful?) And because it's a little bit like visiting the edge of the cliff where you almost jumped and shouting into the chasm below, "you didn't get me." We won. And it's time to celebrate.

We told the kids that we were going to a party to celebrate how they left the NICU. They knew there was going to be a bouncey castle, a clown, and a giant cake. And when bouncey castles, clowns, and cakes come together, balloons usually follow. Before we left, we looked at pictures of them from those days in the hospital and when they first came home on heart monitors. We talked about the special clothes they had to wear with a space for their leads. And how we fed them through a tube in their nose, and that my daughter got very adept at removing not only her own ng tube, but her brother's tube as well (and would give me a proud look when I would come into her NICU room and she was holding the ng tube in her little fist). Which is her personality to this day. They thought the stories were very funny and we thought the stories were very funny. And that's the blessing of space and time. Because each time she removed the ng tube in the hospital, I went in the hall and cried because she cried when they put it back in. But now, with two years between us and the NICU, I could sit with her in my lap and joke about the ng tube. It's perhaps not far enough in the distance to not have a panic attack when I drive through Glover Park. But it's far enough away that I can talk about those days with only a small sniffle. Which is what I mean by shouting from the cliff's edge.

When we pulled into the parking lot, my son gave us a dubious look. Even at two, he knows that not much good can come from a party held at his apnea clinic. But they jumped in the bouncey castle (and extra love goes towards my husband who took each of them back in for a second turn when Mommy decided that she was going to vomit if she remained in that airless hell for one more second). And played basketball. And watched (with a hint of fear and revulsion) a clown twist balloons into animal shapes.

We saw a few of our old nurses and our neonatologist. And we said thank you for the 100th time. And they marvelled at how much the kids had grown for the 100th time. And we left Wonderland with a deep breath as we clicked our seatbelts closed. A deep breath for all the parents who left the NICU empty-handed. A deep breath for the other side of the statistics. A deep breath that it worked out for us. A deep breath that even though it shaped who were are currently as a family, it's behind us. It's just a place we visit. We live at home now.


Anonymous said...

Lovely, lovely post.

Anonymous said...

We've never had a NICU reunion, but your thoughts and feelings echo mine exactly. Even sitting here at my computer, I think about those NICU days and my heart starts to race and I feel the panic coming on. Maybe that's why I'm willing to give myself injections and tie myself to a bed for the next few months to avoid having to relive that experience. It's part of my twins' life story, but not one that I want to repeat. Thank you for putting my thoughts and feelings into words!

Tokyo Biker Mommy 06 said...

Hello, I just stumbled on your blog after searching on "ng tube." Our son has been on a tube since he was 5 weeks old, he's now 9 weeks. His problem is simply that he won't eat, can't find out why. But, this isn't supposed to be about us, i wanted to say, this post is stunning, your prose is beautiful, i'm in tears empathizing with your description of being a parent with a child in the hospital and with trying to imagine myself being able to shout into the chasm. Right here, right now, it seems like it will never be, that we will be in this medical hell forever. Please make it not be so...

Lollipop Goldstein said...

Mommy Cupcake--I wish I could email you directly. Feel free to write me and you're still in the middle of the hell. I'm so sorry that you're going through this and he's not eating. It's so scary.