Profoundly Seth: Survival Mode? I think I know you.

Survival Mode: When Your Child Is in the NICU or PICU

If you have ever sat beside an isolette in a neonatal intensive care unit, this story will feel familiar. Two of my children needed NICU care, and across all my births I have gone home alongside my baby only once — roughly a 25% success rate. I have written about that before, but I have not shared as much about what the NICU and PICU experience is actually like. The short version: it is brutal.

When Jace was hospitalized, there was nowhere for us to stay, so we made a 40-minute drive back and forth at least three times a day and still tried to carve out time with Ava, who was one year old then. By the end of his stay I was more worn out than I had ever been. I felt like I was constantly choosing one child over the other while the rest of my life quietly vanished. Everything happened moment to moment — I was always on my way to see him, on my way home, or preparing to call and check in. Your mind is stretched constantly, decoding complicated medical language and absorbing a rollercoaster of news and feelings.

Staying in the Unit the Second Time Around

When Seth started his NICU stay, John and I felt far more prepared — a feeling that lasted until about day three, when I fell apart. We had been through it once already, and Seth's early symptoms looked almost identical to Jace's. Because he was critical, we could stay right down the hall from him, inside the unit itself, which made everything easier. Sort of.

Being near Seth was a genuine blessing. No long drives, no wasted hours, and I could slip down the hallway to sleep between pumping sessions and time with him. Yet I knew I was missed at home. When I visited the other kids, I worried about Seth. When I was with Seth, I worried I was being selfish for staying, and I worried about all the extra work I was creating for my mom. Seth was so unstable that every time the team described the worst-case scenario, he seemed to start working toward it right away. We mostly had to let the illness run its course; the doctors told us he would get worse and worse until, hopefully, he began to improve.

How Hospital Life Wears Parents Down

The PICU or NICU messes with your head and upends your life. You are parked beside an isolette, a crib, or a bed with a baby who is living moment to moment — and even when they are not, it feels that way. Every door you pass has another sick baby behind it, and when one disappears you are afraid to ask where they went. Some days it feels like too much to walk to the cafeteria in case you miss the doctor you have waited on all day.

On top of the mental strain, there is emotional stress at home. Chores pile up, and bills, pets, and childcare all need attention. The problem is that you are running on maybe 17 minutes of sleep and your brain checked out days ago. You cannot recall the last shower. I remember undressing for a shower, getting distracted, and then getting dressed again, somehow convinced I had already bathed. Everyone wants updates, yet half the time you have forgotten what the doctor said the moment they leave the room.

I had support from family and friends while my kids were hospitalized, and I still struggled mightily. There were babies and families on the unit who had no such support. Their babies would be alone all day because parents had no choice but to stay home with other children or keep up with housework.

A Friend, a Phone Call, and an Idea

While Seth was in the PICU over the summer, I called my friend Mandy. I told her what was happening with Seth, and she updated the blog for me so everyone could pray for him. Mid-call she asked what else I needed, and I had no answer. A hug? Real food? Clothes I had not slept in? None of it mattered in the larger scheme of things, but it would have felt wonderful to receive anyway. Luckily I had family in town who could provide all of that. Not everyone does.

That is why Mandy took on a huge project — one that connects people who want to help with the people who need it. It is called Survival Mode Parent, and it is one of the most inspiring ministries I have come across in a long while. The premise is simple: if you can help, you sign up as a volunteer. When someone in your area has a child in the NICU or PICU and could use a hand, you get matched, and you have the chance to pay it forward. A load of laundry, a few errands, a meal, a stack of magazines to pass the time — every parent's needs may differ. The point is that these are simple tasks for willing volunteers, yet they can feel insurmountable to a parent in that moment. You can be a tremendous blessing.

Help Launch Survival Mode Parent

Today marks the official launch of Survival Mode Parent. I already adore Mandy and think she is wonderful, and now I mostly want to hug her and tell her she is a genius. As with any new endeavor, she needs help — and you can provide it. Start by signing up as a volunteer, then consider blogging about Survival Mode Parent or adding the Survival Mode Parent button to your own blog or website. Word of mouth matters enormously, and because Mandy knows that, she is offering some very cool incentives for helping out. She explains it far better than I can, so I would love for you to head over to her blog and read about it in her own words. I think her gracious heart and generous spirit will move you, and I know you will be glad you took the time to learn more.