How to Survive an Extended NICU Stay with a CDH Baby
When we found out about our son Landon’s two major birth defects (Congenital Diaphragmatic Hernia - CDH and Tetralogy of Fallot), we knew we would be looking at an extended NICU stay. What we didn’t realize is that we would spend 323 days in a hospital 623 miles away from our home. While this time was unexpected and quite possibly the most challenging thing we’ve been through, we found ways to make the best of a tough situation each day.
Tips to survive an extended NICU stay with a CDH baby:
Find the Good and Celebrate
Find Your People
Get Involved
Routines and Schedule Will Keep You Sane
It’s all About Perspective
Find the Good and Celebrate
A local mom spent a lot of time talking with me about her personal experiences with her son. She used her experiences to help encourage and be a bright spot in my day. One day after several consecutively hard days, she suggested finding the good in the day and finding something to celebrate. I have a major sweet tooth, so the decision wasn’t hard. If we had a good day, I would treat myself to ice cream to celebrate. It was something I could look forward to. Sometimes we went out for ice cream on the good days; other times, it was ice cream from the cafeteria. Either way, we found the good and celebrated. It was the sweetest advice!
Find Your People
They say it takes a village, and it does. Our family, friends, acquaintances, and even strangers stepped up in ways that we would never have dreamed of. We found the most support in sharing our story with others via social media. Because of this, we met families that we may have never met otherwise. Not only did we meet new families, but we were able to keep loved ones up to date with everything that was going on with Landon from afar.
When we finally made it back home, everywhere we went, there was someone who knew our family. Every time we make a post, we are flooded with responses from people we know and people we don’t, but they’ve become our people and love Landon like their own.
Find your people and rely on them.
Get Involved
After being in the hospital for so long, I feel like I have a medical degree (side-note: I was a teacher, so the furthest thing from anything medical). Medical jargon became part of our daily conversation, and I’m so thankful for it. By spending every possible moment by our son’s bedside, we learned every need that he had. From this, we learned how to hook his feeding pump up, give his daily shots, draw up and give his medicine, learn his medicine schedule, change dressings, and everything else needed to take care of our son.
The saying “practice makes perfect” stands true here. When the time came for discharge, we were experts on our son’s care. We showed interest early on and took a hands-on approach, so our nurses were more than happy to help us learn what he would need when it was time to go home. Thankfully when discharge came around, we were able to focus on the excitement of getting our son discharged, not learning his medical needs for the first time.
Routines and Schedules Will Keep You Sane
One day, one of Landon’s nurses looked at me and said, “We’ve got to get him on a schedule!” and she was right. We started a schedule. It was short and simple, but it was how we made it through each day. We knew when therapists would stop by, when he would take a bath, when we would hold him and give snuggles, and when we would tuck him in and tell him goodnight. The thought process behind that is that if we were home, we would have gotten a schedule nailed down from the start...so why not now?
Not only did Landon need a schedule, but we did, too. Thankfully my husband was able to stay with us the extent of our stay, so we got into a routine that worked for us. We took turns going back and napping, doing laundry, and taking a break when needed. One of our favorite parts of the day was dinner (or any meal) with the other families we had gotten to know while being in the hospital. They became our family away from home. They became the people that we would rely on—and still do to this day!
It’s All About Perspective
We found out about Landon’s diagnosis about halfway through our pregnancy. Needless to say, any dream that I had about being a first-time mother went out the window. What I realized early on is that I am no longer the mom that I thought I would be. I now had to be the mom my son needed. My perspective completely changed. Each day I had to make the decision (and still do!) to be the best mom for Landon. When I look at the positive in each situation, I choose to better myself and my family.
The advice I have given out the most since having Landon has been “perspective is everything,” and I mean that. My positive outlook and attitude affect everyone around me. I found that to be so true while in that hospital room for so long. Instead of being grumpy and unthankful in our situation, our family chose to be happy and to be grateful toward those taking care of our boy.
One day while leaving the milk depot, the lady at the front desk said, “Any day you're still here is a good day.” She was so right. My first thought was, “Uhhh, no. I’m still here. I want to be home.” But while remaining in the hospital was hard, I was so thankful to be there still because that meant we were still there with our boy, fighting for him and being his biggest advocate.
This crazy life is nothing like I had pictured. But looking back, I’m so glad we were able to make the best of our situation that eventually made us better people and, most importantly, better parents to our Landon!
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