Hand to Hold's Official Blog: Written by Parents for Parents

The Pediatric ICU: Navigating a Hospital Stay After the NICU

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.

Alison Epps About Alison Epps

Alison (TX) has one child, James. He was delivered by emergency c-section at 22 weeks 6 days gestation, he weighed 15oz. and was 10 ½ inches long. He endured a 160-day NICU stay with 4 surgeries and multiple complications. He is now an active 5 year old who recently started Kindergarten! You may connect with her on her personal blog, Facebook or email, 22w6d@gmail.com. She hopes to encourage change in hospital policy so babies born at less than 23 weeks gestation will be given a chance at life.

Comments

  1. I completely understand the guilt and feelings of being overwhelmed. My son was born at 24 weeks. His most difficult complication was NEC at 10 weeks. At that point he was not expected to survive. He spent 4 months in the ICN before coming home, and we remained in “hibernation” until he was 8 months. However, there were unanticipated trips back to the hospital that added another three months total to his hospital stays before he was one. In some ways, the ICN was comforting since we had a daily routine. Being thrown back into the hospital world is unnerving at best. The most troubling one was a month long stay with bowel complications, two surgeries, NPO, numerous scans, and very few answers since he was confounding his many specialists. Some of the other stays, we were expecting–he had several emergency surgeries; however, we knew they were going to have to be done. Except, they were supposed to be scheduled! So even though they were emergency, they were somewhat expected.

    • Wow, he certainly beat a lot of odds overcoming NEC. Then going through so many hospital stays and surgeries. My heart goes out to you. What a strong little guy you have. Hope he’s finished with surgeries and staying healthy now.

  2. Our repeat hospital visit happened just two weeks after our NICU discharge (and luckily was only two nights). I can’t imagine what you went through, Alison! Thank you for sharing. <3

    • Alison Epps says:

      Thanks Melissa. I can’t imagine being back in the hospital just two weeks after leaving the NICU! I’m sure it wasn’t an easy two nights. I hope that’s the last of your repeat hospital stays. Wishing you all good health.

  3. Kristan B. says:

    My 31-weeker has been admitted twice since he was discharged last June. The first was for RSV the week before Christmas and the second was for bronchiolitis last month. My husband was away for work for the second hospitalization so I was on my own. I wouldn’t have made it through that last hospitalization in one piece without the knowledge I gained from those initial 58 days in the NICU. The bonds I made with the nursing and support staff really helped. I knew there were programs in place to ensure someone was in the room with him when I needed to go get a bite to eat. And I knew who to call when the PEDS nurse blew his vein on her first try. Since I had been keeping in touch with the Parent Navigator from the NICU, she called the NICU to have a nurse come up and put his IV in for me. In between sobs, I asked that the PEDS charge nurse request a nurse from the NICU to come up. The IV not going in is what triggered me. It brought back the memories of every blown vein and the hours of trying to get a PICC line in and then waiting for shift change so the next charge nurse could try to get the PICC line in.

    It’s definitely tough, but you learn to roll with the punches. Be strong for your little one. And pray that everything will be OK.

    • I’m so glad you had people to turn to who could help you through his hospital stays. Knowing who to call is so important, and definitely a ‘benefit’ of going through the NICU. I hope you’re finished with all those surprise admits and your little one stays healthy.
      Those triggers are so difficult to predict. I experienced one a couple weeks ago when I was being stuck for an IV. I completely broke down as I thought about how many times he’s had to endure needle sticks. We live and learn, and hopefully grow stronger through each of these experiences.

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