No one gets pregnant and imagines they will start their child’s life out in the NICU, but it happens to even the best of people. And whether the stay is due to a known condition or due to something that surprises the doctors at birth, it’s never easy on parents. It’s a rollercoaster full of emotion and stress until their child gets to go home.
So today, I wanted to let a few parents who have made it to the other side—Jason, Ryane, Julie, Megan and Hannah—give future or current parents who are in the NICU their best insight and advice for dealing with a stay successfully. They all have happy and healthy children. So before anything else, be encouraged!
How would you describe your experience in the NICU?
“Fear is your ever-present friend when your child is in the NICU. Every time you walk through the doors you are scared that something will have gone wrong in the brief time you have left your child. You have to give yourself over to the experience. The dye has been cast . . . you have to give your life and the life of your child over to God. Whomever you view as the higher power is ultimately the one in control.” –Jason
“I felt panic. Each day could take us a couple of steps forward or many, many steps backwards. It was a game of not knowing what the next second ahead of us looked like. I felt frustration. Though the world of medicine has made incredible advancements in realm of coronary heart diseases in the last 30 years, there is still so much unknown. I felt sadness. Being thrown into the world of sick kids was like nothing I have ever experienced. I felt hope. Or rather, I learned hope. Real hope. I learned that even if the very very worst happened, I was not alone, Christ was carrying me every single step of the way. That’s not said in a cliche Christian way. It was undoubtedly my reality for so many months and continues to carry me on days when those fears of Judson’s future creep back in.” –Hannah
What is one thing you didn’t expect?
“One of the hardest things about having a baby in the NICU is leaving; the day that I had to get into a car and be driven away from my tiny baby, that was fighting for her life, absolutely tore me apart. The only thing that comforted me was knowing how amazing the staff was at Women’s Hospital. The nurses truly love those babies.” —Julie
What is your best advice for parents in the NICU?
“My best advice would be to take care of yourself. Take the time to shower, to eat and, most importantly to sleep. Your child is in the NICU. Your child is in the best, most capable hands the medical profession has. It takes a tremendous heart to work in the NICU and every staff member is there because they want your child to thrive . . . throw away your phone. You are not Dr. Google. Trust the neonatologist, they do this everyday. An hour long Google search is no match for medical school and years of experience”. –Jason
“Learn what all the wires, tubes, and alarms mean. It all looks SO scary. But if you know what everything does and what each alarm means it makes it much less scary.” –Julie
“Be your child’s advocate. There are God-given mom-intuitions that sometimes trump that of the doctors. You know that baby even though you feel like you barely do. He or she is from your womb. Trust your gut.” –Hannah
What is one thing you did to make yourself feel better?
“I read my daughter The Hobbit cover to cover. As I read I did the voice of each character the best I could. A beautiful moment happened between us when Smaug the dragon appeared. She covered her ears almost as if she could feel the menace in his voice, in my voice. I read several other books over the months my daughter was in the NICU, but that moment stands out in my heart.” –Jason
“Pump! Pumping milk for Emily was one thing I could control. One thing I could do for her to help her get stronger. I drove an hour each way, twice a day, for 80 days to visit her. I used that time to cry, pray, and pump! I bought a hands-free pumping bra and an adapter for the car so I could plug in my pump.” —Julie
” kangaroo care! As soon as you are allowed to hold that baby, get your shirt off (and your bra!) and put that baby skin-to-skin. Button down shirts are helpful for this. Also, it’s nice to have a Boppy pillow so your arms don’t get tired (I kept one by her bed). Emily’s heart rate and respiratory rate were always best while she was skin-to-skin. Em had high blood pressure for a couple of days (I was sick and couldn’t visit for 3 days). When I got to her, I held her skin-to-skin for 4 hours straight and her blood pressure stabilized!” –Julie
Were you always strong?
“I very often did not stay in one piece. It was a world I so badly wanted to pretend I didn’t know about, devastating on every level. My heart ached like I had never experienced when we faced many, many set backs in his hospital stays. It often felt like I would crumble under the weight of it all. I literally just went moment by moment and didn’t look much further than that. We are Christ followers and relied very heavily on our faith. But even then, we had to choose so often to believe all we knew about God, that he is faithful and would see us through no matter the outcome. And He did! Let yourself grieve for what you thought life would look like for you and your child. It’s ok and understandable to do that.” –Hannah
Is there any good that came from your experience?
“I always feel very hesitant to say this because it feels almost mean, but the lessons we have learned by just experiencing this kind of level of heartbreak and world-falling-apart have opened our eyes to so many new things. We love deeper, empathize more deeply, have a new and stronger desire to help others in their crisis, and so on. If you had asked me any of that on the midst of the trial, there’s no way I felt that. But on this side of it, those are our feelings.” –Hannah
Any final thoughts?
“Prepare for the long road. It’s a marathon not a sprint.” —Megan
“All you can do is be there for your child. All you can do is love them and endure. And you will do it because they are yours. Endure, there are happy endings.” –Jason
Lastly, if you are reading this and know someone in the NICU, here are a few things these parents said were wonderful to receive: 1) calls and texts to check in, 2) gift cards for gas money or food, 3) offers to help give rides to other children, and 4) meals!