Thursday, March 20, 2014

•A NICU Mommies Struggle•

This post is not for a pity party, this post is to help me deal with bottling things up & bursting in a form of writing. It is to help me recover from this experience. If you plan on judging me & thinking I'm pitying myself don't continue to read. 

I planned on having a healthy baby. I planned on taking him home 3 days after he was born & I could be released after the c-section. I planned on being waited on by my husband for a week afterwards. I planned on my other boys being big brothers again. I planned on being sleep deprived. I planned on putting him in his bouncer & swing to soothe him. I planned on taking a newborn home with me. Things are never the way you plan. My baby is not as healthy as I would like. I was released from the hospital without a baby. I was not recovering at home, instead I was being pushed around like a fool at Primary Children's. My boys do not understand why their brother can not come home, they don't understand why he is sick & can't take medicine like they do. My baby sits in a swing, but has wires & monitors attached at all times. I sit here, at home, without my baby. I have spent so many hours wondering how much longer we are going to be here, I still don't know when we will be coming home & it's frustrating. I hate being negative & sometimes it totally consumes the way I think. I know there are worse things that not only could have happened with this genetic defect, but also there are worse off babies around us. We are by far the healthiest in our room of four babies. But that doesn't stop me from sometimes asking why our family? What am I supposed to learn from this? Patience? Organize our life better? Be a better mom? A better wife? A better person? More attentive to our kids? Questions keep piling the longer we sit watching our baby suffer. He is rare. He is special. He is a fighter. He is my hero. He is my baby. His body is a mystery to the Dr's at the hospital. 

I remember so clear the moment Dr. Franson came into my room & said we are going to transport Peyton to Primary Children's, the NICU team from Portneuf will be here within an hour. My heart sank. It was almost like my brain was not functioning, I couldn't think. I couldn't speak. All I could do was cry. I sobbed. I broke down. Post partum hormones & emotions were at an all-time high. I experienced post-partum depression with my other boys but that was nothing compared to this time. Dr. Franson told us at 7:30 a.m. what was happening & I don't think I stopped crying until I received my blessing after Trev & Peyton left in the ambulance almost 3 hours later. I know the reason we were given this baby & this trial is because as parents Trevor & I can handle & take care of Peyton the way he needs to be. We are strong together & we didn't know how strong until now. We NEEDED to know. That was part of God's plan for us. I knew I loved Trevor & wanted so badly to spend forever with him while we were first dating. You never know what life is going to throw at you when you decide you're going to marry someone. It's going to be hard, there are times in every marriage I think when you think it might be easier to just back down & give up. You don't! & when you get through it you look back & realize just how strong you really are together. We are struggling, not with loving each other, not with relying on each other, & not with our marriage. We are struggling in our own ways as we are dealing with our baby being 3 hours away & no answers. We have never felt stronger as a couple! We got one month together. We were able to spend quality time & learn how to better communicate with each other! I rely so much on Trevor emotionally. I need him really bad this time. I am an emotional wreck most days & so is he. Although he is a man & would probably never admit that to anyone. The medicine helps, most days. And then I have days where I can't help but cry. Tears well up in my eyes & I don't even know what triggers it sometimes. For now I will just wait patiently. I will wait for answers. I will wait for Peyton to gain weight. & I will wait for the moment they ask us, when would you like to room in with Peyton it's almost time to go home. When that day comes, I will start to work on being myself again. Until then don't be alarmed if you don't recognize me because of the bags under my eyes & my hair not up to standards, don't be alarmed if you feel like I'm avoiding you or I'm being short with my answers I don't like to talk much about this & cry in public. 

I don't know what the future holds for my sweetheart Peyton, but I am certain that we will do it as a family! 


  1. Kylie, we continue to pray for you and your family and baby Peyton. I cannot even imagine how heartbreaking and frustrating this must be. Prayers and peace.

  2. You are very strong , special people. God will be by your side as you raise your boy's. God Bless you all.

  3. Kylee, this is Christy Stephenson. I just read through your post and had tears all the way through! I feel your pain and can sympathize with you in a way that most people can't understand. I'll never forget a pediatric cardiologist telling me that my newborn baby (Bryce) would need open heart surgery to repair a congenital heart defect. And about a month after we got that news, I had a psychiatrist tell me that my oldest, Luke, has autism. It's hard to describe the grief and despair I felt in those days. Life was a blur. I felt angry that God would put so much of a burden on me all at once. I remember thinking "couldn't He have spread the joy out a little?!!!". Here I was, a young mother with two kids, both of which had serious issues. I never imagined I was going to have a child with a special health issue, let alone two! I have never been at such a low point in my entire life. I spent most of my days crying and wondering why, and not to mention looking at everyone else's kids and feeling anger that I couldn't have a "healthy" or "normal" child. It took me a very long time to come to the same realization you have already figured out...Peyton was meant to come to your home. God knew you and Trevor would take care of him the way he needed to be, and that your family would grow and learn valuable lessons because of him. It is TOTALLY NORMAL for you to have bad days, and to be angry and frustrated. Don't be hard on yourself for that. You deserve to grieve. Embrace that. It's an important part of the healing and acceptance process. You are doing a wonderful job and Heavenly Father knows that. I can tell you that for me, we still have plenty of challenges, but I wouldn't really trade a crazy as that sounds. I have seen modern medicine correct Bryce's heart defect, which is a miracle in and of itself which I thank Heavenly Father for everyday. And as for Luke, he will always be our most precious Angel. From him, I have learned more about the true meaning of unconditional love than anything else in this entire world could have taught me. I am grateful for my path, and for the person it has helped me become. I am more compassionate, loving, and understanding because of it, and you will be as well. These experiences change us and you will see the world from a different perspective because of it. But most of all, we are learning the lessons that God wants us to learn. Hang in there and let yourself cry. Rejoice in the small victories, things that mean very little to mothers of "normal" kids are a huge deal to us parents to have kids with issues. And most of all, consider yourself privileged that God held you and Trevor in such high esteem that he was willing to entrust one of his most special children with you. You are now a member of a very "elite" club, which comes with a high price, but with unimaginable blessings! Let me be the first to welcome you :) I know you will find that happy place...just give it some time. And in the meantime, if you EVER need someone to talk to, please call me! (208) 852-6025