The Pediatric ICU: Navigating a Hospital Stay After the NICU

April 22, 2013

We work so hard to keep our children healthy this time of year. I say work because it can feel like a job sometimes. We manage family and friends who want to visit, making sure they aren’t sick and haven’t been around anyone sick. Some of us go into “lock-down” through cold and flu season; nobody in and nobody out. We stock up on sanitizer and take on cleaning in OCD mode. But even with all these precautions our children get sick, often requiring hospitalization. And a hospital stay is scary. Whether it’s one night or several, you’re reminded of just how fragile your child still is. It can also bring back an avalanche of memories from the NICU, and suddenly you’re reliving your worst nightmare.

James found comfort with his wubby while he was intubated.

James found comfort with his wubby while he was intubated.

That’s where we found ourselves in December. My former 22 weeker, now 2 1/2, was hospitalized due to RSV and pneumonia. What we thought would be a few days turned into 5 weeks in the hospital and another 10 days in a rehab facility. The scariest part was when he was intubated. He spent 15 days on the ventilator, something we never expected at this age. That was my trigger. There were lots of tears and that all too familiar uneasiness in the pit of my stomach. Once again we were anxious for blood gas results and watching his sats on a monitor. We felt helpless when he was extubated and couldn’t handle it, having to be re-intubated a few hours later. How could this be happening again to our sweet little boy?

It took some time, but we found our strength and courage again, and we came out even stronger on the other side. There were several things that helped us along the way. If you find yourself facing a stay in the hospital, whether planned or not, I hope these suggestions will help.

  • Let Go of the Guilt. We are so quick to feel guilt, wondering what we could have done differently to prevent the situation we’re in. For most of us the guilt started with whatever caused our NICU stay initially, and it carries over into anything else that causes a setback. You are where you are. Focus your attention and energy on your child, your own healing, your family. A positive frame of mind goes a long way when you’re in trying circumstances.
  • Find a Support System. You may find that preemie moms and moms of medically fragile children will be your strongest support. They get it. They understand where you’ve been and the fear that comes from where you are. Whether it’s in person or online support groups, the preemie community is strong and we love to help. We relied heavily on the love and kindness we received from our fellow preemie families.
  • Rediscover “NICU Mode.” All those lessons you learned over weeks or months in the NICU will serve you well now. Ask questions, to multiple people if you have to, until you get a response you trust. Find nurses you can bond with and request that they care for your child. Be there for rounds and know the plan for your child. You have to know what is right in order to recognize when something is wrong. And, trust your instincts, they are usually right.

We discovered that our NICU experience provided some peace as we faced this new challenge. I hope the same for you. Let your past experience form a foundation of strength and courage to build on.