The NICU family and the Village

It's like I have a new family. Since Max was born, we've become part of this new larger community, the NICU, and it's a family of sorts. The doctors, nurses, respiratory therapists and the other preemies and their families; these are the people Max and I live with on a daily and nightly basis. It's amazing how they seem to be the communication center of our lives.

I don't read the newspaper or watch newscasts, I might occasionally read a few headlines on my cell phone... (I hear there's some sort of oil spill) I text from the NICU parents room, update he blog and Facebook, but that's really the extent of contact with the outside world. There is no time for lengthy phone calls, since I can't use a cell phone inside the NICU. Quick calls from the house phone are just to make arrangements for Ella and Alex, or to update Troy. It's like I walk inside those double doors every morning and time stands still. It hasn't moved since Max was born.

My communication is with those who are caring for Max and those other parents who are in the same boat. Most of my time is spent in his room, watching the monitors. They beep when his pulse oxygen is too low, or when it's too high, when he's too hot, or too cold, when his heart rate drops, or when he forgets to breathe. It's amazing how many bells and beeps and whistles I can now identify, even from down the hallway. I hear them, even in my sleep. I've learned to tune them out and only panic, when the nurses move faster, or doctors pay attention, or when someone hits that red emergency button and EVERYONE comes running to help.

When I'm not listening to the electronic chatter, I'm talking with Max's nurse, respiratory therapist, or doctors. I must seem like an idiot to most of them. I ask questions about everything, every day, over and over again. We are constantly hungry for information, updates, anything that will give us a way to help him, or a glimmer of hope, that he will survive. We feel so useless and helpless, there is nothing we can do to help him, or care for him, or heal him. We just touch him, hold him, talk to him and will him to live. They comfort us, support us, and educate us.

We're not alone. When I need a break, or usually just to hydrate, I head for the parents' room. There, the talk is minimal. Most times I chug some water or a chai, grab a graham cracker and head out the door again. Sometimes, the TV is on, and I stare at whatever stupid show is on. No one ever turns on anything of value, it's just about background noise. Something to look at and not think. I've never heard anyone ask to watch something specific or to NOT change the channel. We just don't care. No one is really watching.

We ask one another how the son/ daughter is doing today, how we're holding up, and when each family might be going home. We pass in the halls, smile and say "hello," share hand sanitizer, surgical soap, scrub sinks and the supply of sterile bottles. We don't walk into each others rooms, we don't see the other children. We chit chat and smile knowing that these families have their own daily drama, they too are bewildered by what's happened, and living in shock... just like we are.

So many people call, email, comment on Facebook, or speak to us personally, asking how Max is doing, how we're doing, how they can help. I say the same thing to everyone. "He's doing okay." "He had a good day." "We're hanging in there." "Taking it one day at a time." "Thank you for your prayers." "Thanks for all your help." I feel like' I'm a space cadet! I can't focus my thoughts on anything. I'm overwhelmed by what's happening to us and what's happening for us.

Friends and family have cared for our children, taken them in days and nights. You've mowed our lawn, fed us meals, sent us money and gift cards. You've visited us at home at in the NICU and you've prayed for us and for Max. I haven't gotten around to writing thank you notes. I don't even know where to start. How do we thank the people who have saved us? For these 6 weeks, we have survived thanks to you. Words cannot express how grateful we are, how amazed by your generosity, how thankful for the large, extended family, we never knew we had.

My friend Julia always told me it takes a village, and Max may be tiny, but his village is bigger than ever! So thank you, to all of you who have helped us, who care for our family, and who work to save Max everyday. Even if I seem catatonic, or oblivious, I do realize how much you're doing for us, and we are eternally grateful. This road is long. We are weeks, months away from Max being strong enough to come home. We have another surgery ahead, and who knows what else. So thanks for sticking with us. I hope we haven't scared you off just yet...