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No One Told Me What It Was Going to Be Like in the NICU

No one told me what it was going to be like in the NICU. No one ever mentioned it was going to be the hardest and scariest emotional roller coaster I would ever be on.

When I was pregnant with our twins, we had no idea how anything was going to turn out. We knew our twins were likely not going to be full-term, but we had no idea what it was going to be like. We knew our son was sick. We knew his kidneys were damaged and not working. We knew his lungs were not developed. And we knew he already had brain bleeds. We knew our daughter was going to be small. We knew she was developing with no complications. So as we were signing the papers to have fetal surgery on our son, we had no idea what was going to happen.

We told everyone we would make it through this. But we had no idea how we were going to get there. We had no idea how much this was going to hurt. We had no idea how hard this was going to be on us, on our family, on me. No one told me. I think the most significant surprise was the emotional toll the NICU journey had on me.

I like to think of myself as the strong and silent type. It is very rare that I show any emotion. Especially tears. It takes a lot for me to cry in front of people. Other than church, it is very rare that I cry in public. If I do cry in public, it is probably because I have lost all control. When we were going through our high-risk pregnancy, we were given a tour of the NICU. We met with the neonatologist, nurse practitioners and some NICU nurses. Our maternal-fetal medicine doctor thought it would be a good idea to meet them all, because based on what we already knew and the high probability of prematurity, he thought¬†it would help to get familiar with the unit. So we went in, met all of these people and walked through the NICU. We were even given permission by a couple of parents to take a peek at their babies and to speak to them and ask questions. Which we didn’t, because at the time we had no idea about anything. What was there to ask?

I prayed for my baby’s pain to go away. I prayed for him to be free of this disease. I prayed for God to give my son peace. No one told me that I would be begging God to give¬†me peace so I could let my son go.

No one told me there would be a night when I would look out onto the horizon and take a deep breath and suddenly be OK with the direction my¬†life was going. No one told me I would see angels around my son’s bed. No one told me I was going to have to make the decision to let go¬†of my son. No one told me there was going to be a time when I would be told there was no hope for my son. No one told me how to react to that. No one told me what I was supposed to say.

No one told me what to say to the mother I made friends with, prayed with, spoke with and dreamed with while in the NICU. And no one told me what I was supposed to say or do when her baby passed away. No one told me what to say to any of the mothers I met while in the NICU. No one told me the only way I was going to remember their babies’ names was by the room number our son was in.

No one told me I was going to meet these amazing nurses who¬†were going to care for my child and love both my¬†children as if they were their own. No one told me I was going to depend on these nurses for life and death. No one told me I was going to become life-long friends with these women who would one day¬†save¬†my son’s life. No one told me what to say to them. No one told me how to be with them. No one told me how life was going to be¬†without¬†them.

No one told me that the time our twins were in the NICU and the many months my son would spend in the NICU were going to be the most frightening, powerful, unbelievable and miracle-filled moments of my life.

No one told me that my life and the way I see everything was going to be forever altered. I am different because of the NICU. I am someone I never knew I would be or could be. No one told me the NICU was going to be just a stepping stone for what is to come for our family, for our daughter, for our son, for me.

No one told me, but I learned. I learned the hard way. I believe I learned the best way. We got through it. And we continue to get through it.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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