#30DaysofBrave Story- Chandler

Beep. Beep. Beep.

The countless beeps, noises, voices. They still haunt me sometimes. There is no silence, no peace to be found. Silence would not equal peace though, no, peace would only come from the words "you can take your baby home, mama".

39 weeks pregnant, the contractions began at 4am. I was tired, as sleep was rare when you're that uncomfortable. The kind of uncomfortable you only know if you have been 39 weeks pregnant. 30+ hours of labor. Labor was uncomplicated, it was as normal as could be. 15 minutes of pushing, that 15 minutes felt years long due to the anticipation of welcoming our baby boy into the world. Finally, he was placed on my chest and the world around me disappeared and shattered simultaneously. "What is that?" I remember thinking and at some point I guess I asked out loud. The dynamic in the room shifted. The nurses were whispering, the doctor was avoiding direct eye contact. "I don't know", the words nobody wants to hear come out of a doctor's mouth when they're talking about your 'less than a minute old' baby. As quick as he was placed on my chest, he was taken away. My sweet boy's organs were not where they should have been... They were outside of his body.

An omphalocele, that was what they called it. We were in a small town hospital, one that was not equipped to handle this issue safely. So the decision was made, my baby that was born only minutes earlier would be taking a helicopter to another hospital... Leaving me behind. I remember hearing the helicopter blades making their noises on the roof, they were there to take my baby far away from me. I remember thinking that I was holding it together so well. That all changed when it was time to sign the consents: consent for a spinal tap, consent for a blood transfusion, consent for genetic testing, etc. The tears came and I do not think they stopped for the next 36 days. They brought my sweet baby boy into the room to say goodbye to me, the chamber he was in looked complex and massive in comparison to his little body. Before I knew it, my baby was on that helicopter and his father was in a car following him. I was truly alone in those moments.

The next day was the hardest. I left the hospital and got home as fast as I could to shower and change so that I could go see my baby. The drive was filled with phone calls and the voices of doctors and nurses I would never actually meet. They were taking him to surgery, to put his intestines inside of his body where they belong. I had carried this sweet and innocent baby in my body for 9 months. For 9 months he was safe. In less than 24 hours outside of my body, he had been through more than I ever had in my entire adult life. Surgery went smoothly and then our journey really began.

There are different levels in the NICU and we were in the most extensive. My sweet angel was hooked up to monitors, IVs, tubes to help him breathe. All I wanted to do was hold him, but at that exact moment I realized I was terrified. Terrified to touch him, terrified to pull out his PICC line, terrified to make matters worse somehow. My world was crashing down around me and instead of it getting easier, I found myself unable to breathe. The body that was supposed to give him life and grow him, my body, had betrayed the both of us. Or at least that's what I thought those days. There is no "mom guilt" quite like "NICU mom guilt". I spent a lot of time blaming myself, my body, and many other things that were out of my control. I cried. I begged to know the answer to my question of "Why?" Why us? Why my baby? Who had I ticked off in a past life? I stopped caring for myself. I forgot to eat, to drink water, I forgot to live. I did what I had to, to make sure I survived. To make sure that I was able to see my baby every single day for as long as I could. Those days were extremely dark, the only light to be found was in our little corner of the NICU pod... Holding my favorite person in the world.

36 days were were in the NICU. 36 days I drove hours away from home to sit with my baby for as long as I could before I had to gather myself and drive back home so I could do it all over again the next day. 36 days he was sleeping in a hospital and not at home in the bassinet I had next to the bed for months anticipating his arrival. 36 days, 9 doctors, 1 PICC line, 1 chromosomal "abnormality" (I use the term loosely), 2 surgeries, more nurses than I could count, and so much more. I remember holding him down for procedures and receiving genetic results I was not prepared for, and I remember them more vividly than I can recall anything else in my life. Those hours spent in the NICU, those were the times I was at my strongest. Not because it was easier (in fact it was exactly the opposite), but because I had to be strong for my NICU warrior. I put on a brave face for him. I stepped out if I needed to cry, or scream, or hit something. I waited until I was in the car if I had to. Nothing in life prepares you for something like this. I think as parents, we are designed to do whatever we can to help our children thrive and in those moments I felt truly helpless.

I have talked a lot about the things that were dark and things that felt endless. It is important to say: we got through it. I remember his first poop after surgery (and celebrating with dad), I remember the first bottle he finished, I remember all of the little and big victories as much as I remember the hardships. More than anything though, I remember being told that we could finally take him home. After a month in the NICU... It felt like it would never happen. After 36 days though... WE DID IT!

Looking back, I don't know how I survived. I don't know how I got out of bed every single morning. All I know is "why", I did it because: my heart, my soul, my baby boy was not home in my arms. I write this as a completely different woman, as a mother. I write this as someone who is more of an optimist, as someone who has faith. I write this as someone who fought and advocated for her child. I write this as my sweet boy plays next to me. HOME. Finally."

Such a beautiful story of bravery by this #NICUmama and her #NICUwarrior!

Thank you so much for sharing and bringing light to your sweet boy.

#NICUawareness #NICUawarenessmonth #NICU #NICUbaby #ProjectNICU #projectnicucommunity