What I haven't written about as much is the actual NICU (and PICU) experience. It basically sucks. With Jace, there was no place in the hospital for us to stay, so we drove 40 minutes back and forth at least three times a day, then tried to squeeze in time with Ava, who was one year old at the time. By the end of his stay I was more exhausted than I had ever been in my life. I felt like I was always choosing one kid or the other, and the rest of my life completely disappeared. It was all moment to moment...I felt like I was always on my way to visit him, on my way home, or getting ready to call and check on him. Your brain is constantly being challenged...to understand complicated medical terms, and process a rollercoaster of news and emotions.
When Seth began his NICU stay, John and I both felt much more prepared to deal with it (that lasted until approximately day 3, when I lost it). We'd already been through it once, and Seth's early symptoms mirrored Jace's almost exactly. Plus, because he was critical, we were able to stay right down the hall from him, actually inside the unit. It made everything so much easier.
Staying with Seth was a huge blessing. I didn't have to drive back and forth and waste all that time, and I was actually able to slip down the hall and sleep in between pumping sessions and my time with Seth. But I knew that I was missed at home. When I went home to visit the kids, I worried about Seth. When I was with Seth, I worried that I was being selfish by staying with him. I worried about all the work I was creating for my mom. But Seth was so unstable...every time they told us the worst case scenario, he immediately started working on achieving it as soon as possible. We basically had to let the his illness run it's course...the doctors said that he would get worse and worse until, hopefully, he began to get better.
Point is, the PICU or NICU messes with your head. It messes up your life. You're stuck next to an isolette, or a crib, or a bed, with a baby who is living moment to moment, and even if they're not, it feels like they are. Every door you walk by has another sick baby behind it, and when they disappear you're afraid to ask where they went. Sometimes it feels like too much to walk to the cafeteria, in case you miss the doctor you've been waiting on all day.
On top of all the mental stress in the NICU, there's a ton of emotional stress on the homefront. Things are left undone, bills and pets and childcare arrangements need to be dealt with. Problem is, you're living on maybe 17 minutes of sleep and your brain exploded a couple of days in. You can't remember the last time you showered. I remember times I would literally undress for the shower, then get distracted and get dressed again, for some reason thinking I'd already completed my shower. Everyone wants updates, but half the time you've forgotten what the doctor said as soon as he leaves the room.
I had support from family and friends when my kids were in the hospital, and I still struggled mightily. There were babies, families, on the unit when we were that did not have that support. Their babies would be alone, all day long, parents having no choice but to stay at home with other children or get housework done.
When Seth was in the PICU over the summer, I talked to my friend Mandy on the phone. I told her what was going on with Seth and she updated the blog for me so that everyone could pray for him. While we were on the phone, she asked me what else I needed, and I didn't know what to say. A hug? Real food? Clothes I hadn't slept in? Nothing of it really mattered in the larger scheme of things, but it would have felt really good to get it anyway. Luckily, I had family in town that could provide all that for me.
But not everyone does. That's why Mandy decided to take a huge project on, a project that is going to join the people that want to help with the people who need it. It's called Survival Mode Parent, and it's one of the coolest ministries I've seen in a while. It's a simple premise. If you can help, you sign up as a volunteer. When there is someone in your area who has a child in the NICU or PICU and could use some help, you'll be matched up, and you get the chance to pay it forward. A load of laundry, some errands run, a meal, a stack of magazines to help pass the time...each parent may have different needs. The point is that they're simple things for willing volunteers to meet, but may feel insurmountable to that parent at that point in time. You can be a huge blessing!
Today is the official launch of Survival Mode Parent. I already love Mandy and think she's super cool, but now I kind of want to hug her and kiss her and tell her she's a genius. Of course, as with any new endeavor, she needs help. And you, my friends, can help her. You can do that by first and foremost by signing up to be a volunteer, but also by blogging about Survival Mode Parent, or by adding the Survival Mode Parent button to your blog or website. Word of mouth is so important, and because Mandy knows that and is super cool, like I said, she's offering some very cool incentives for you to help out. She explains it all much better than I can, so I'd like to ask you to head on over to her blog and read about this in her words.
I think you'll be moved by her gracious heart and generous spirit, and I know you'll be glad you took the time to learn more about Survival Mode Parent.