Our Life in the NICU: Part Two

We were blessed. Blessed to know ahead of time that we would be spending time in the NICU. I always told people that, and I believe it. Knowing something hard is coming gives you time to prepare for it. By June, we had truly accepted that NICU life was our normal. This was how we would experience the newborn stage. This is where we would navigate the uncharted waters of parenthood.

Sweet boy with his daddy.

Alex was lucky enough to be able to take six weeks of FMLA when Evan was born, so for six weeks, we spent every moment together. We had never done that in our whole married life. I don’t actually know any married couple, aside from those retired perhaps, who can say that. It was a dream. I fell more in love with my husband in the months we spent in the NICU than I knew possible. We were a team in all things. Alex showed me Christ’s love in ways I had never really experienced from another person before. He sacrificed for me and for Evan daily. He always put our needs above his. He was the quiet strength I needed on my darkest days. Our marriage was strengthened by crisis. This is one of the many gifts the NICU gave us.

My whole heart outside of my chest.

As I said in my last post, June threw us curveballs. Evan was throwing up roughly 30-40 times a day, and honestly, that may be a conservative number. Through all the extensive testing his doctors did to establish a cause, all we could find was acid reflux. “The worst case of reflux” one of his doctors “had ever seen in any NICU patient.” This doctor has been practicing for decades. I told you. Evan is special. He has to do everything in a dramatic, over-the-top manner. We got to the point where we just didn’t put clothes on him anymore because changing his outfit at every single caretime just to change it again five seconds later was irritating him so much that he would throw up even more. To this day, I cannot hear another parent say their child throws up “a lot” or has “really bad reflux” without rudely thinking “you have no idea what acid reflux is.” (I know that each child is different and everyone’s experience is their own. But comparison, that nasty thief of joy, comes at me and leads my mind to these sinful and inconsiderate thoughts. I am human, and I am sorry.) Evan did not gain any weight at all in the first two weeks of June. Our team decided we would place a G-tube, a more permanent way to tube feed that goes directly into his stomach, in hopes that this could relieve some of his reflux since he wouldn’t have a tube going down his esophagus. He was put on the surgery schedule for June 13, a day when, thank God, Maegan would be with us.

In the midst of all of this vomiting, I should mention that we were also working with speech therapy to teach Evan how to suck-swallow-breathe, a combination necessary for eventual PO (by mouth) feeding. He did not have much of a swallow reflex when he was born, so if he had food, vomit, or even spit in his mouth/throat, he would choke, hence all of his desaturations. When Sam, our wonderful speech therapist who we still work with today, would come to work with him he often said “no, thank you” by dropping his sats and turning blue. How rude of him. Thankfully, Sam didn’t take too much offense and stuck with us even though Evan was pretty mean to her during our time in the NICU.

“No pictures, Mom. I don’t feel well.”

Even though Evan was throwing up constantly, dropping his sats often, and turning blue so frequently it seemed like it was for kicks and giggles, we started to get comfortable. Good NICU nurses are ones who teach you how to be calm in chaos, because life with a preemie will be chaos at least for a while even if you go home. We had great ones. Maegan knocked in the cardinal rule of the NICU: If we don’t freak out, you don’t freak out. It took some time for it to sink in, but it did. Martha taught us a second one: It’s okay that it’s not okay. I don’t even know if she knows she did this for us. But it was one of the most impactful lessons I learned.

We now knew what beeps mattered and which ones we could ignore. We knew when to ask for help. We knew Evan well enough to know something was wrong even before the monitors told us. We knew to breathe and stand aside when nurses needed to rush to his aid. We knew that when his blood oxygen was reading 9% and his HR was 31, his God would save him through the hands of his guardian angels. We knew that this would be temporary. We knew that our God is a faithful God who redeems all things.

Waiting for the surgeons to come get him.

June 13, surgery day, finally arrived. Evan wasn’t allowed to get any food until his surgery so he was just getting IV fluids. That was the happiest and calmest day he had had his entire life. No food. No vomit. We were worried he would scream in hunger all day, but he was so sweet and content. Our hearts were equally broken and joyful. Our sweet boy was made happy in hunger. But maybe this is a lesson…our time with a sick child has been a time of intense hunger and need for Jesus, and because of that it has been one of the most joyful. Wow, I am still learning.

We said a prayer as they wheeled Evan away and decided to go for a walk outside to keep our heads clear. We barely made it 20 yards from the hospital doors before we got a call from the surgeon. “There’s been a complication…” I honestly cannot remember everything he said to me on the phone because we were sprinting back towards the hospital. I remember “CPR,” “epinephrine,” “we got him back,” and “we will meet you in B pod.” Our boy was NOT okay. This was NOT the way this was supposed to go. We rushed back into the NICU, and a group of nurses and CNAs were getting all of our things from D pod to move to his new carespace in B pod. You don’t bump back up in the alphabet. That’s not how the NICU timeline is supposed to go.

We stood and watched as they rushed Evan in. He looked lifeless to me. He was pale. He was limp from medications. He had a breathing tube keeping him alive. I remember his temperature was way too low, so they had a heating pack underneath him. I think there were at least six people in his carespace frantically working on him. “They are freaking out,” I thought. “What am I supposed to do?” They drew blood and called out numbers. They ordered blood for a transfusion.

So swollen.

All of this was happening while the surgeon explained what happened to us again in person. You know those risks they tell you about before any surgical procedure no matter how small? How there are things that happen in less than 1% of people, but they still need to mention it? Well, Evan is that less than 1%. His airway spasmed when they tried placing the breathing tube when putting him under. It completely closed. No air could get in. They had to give him epinephrine and do chest compressions to keep him alive and get his airway open again. Once they could place the breathing tube and get his vitals up, they couldn’t risk proceeding with surgery or extubate with him being so unstable. I don’t know if I was stepping up and being the “strong one” or if I was just in too much shock to react, but I just stood there and said “okay” while Alex reacted the way I think I was supposed to. Once things settled, the respiratory therapist pulled a chair up beside Evan’s bed and told me to go hold his hand. He didn’t look like himself. He looked like he had lived a thousand lives since I last saw him just an hour before. Where was my sweet tiny baby? Why did this happen? Where do we go from here?

We stayed late that night. It felt even more wrong than usual to leave him behind as we went home to get some “rest” (you never truly rest when your baby is in the NICU). Maegan had picked a nurse for him that night since he was supposed to be post-op. Her name was Brittany; she would later become our night primary and a dear friend. When we got home, I came undone. Alex held me and kept reassuring me that Evan was okay now. I didn’t believe him.

The next few days were hard. Evan stayed intubated for 36 hours and was so irritable when he got extubated. They had to place a new PICC line for TPN since he was going back to the beginning with his feeds. This was a major setback for him. Not only was he too unstable to reattempt surgery for at least a month, but he also was back where he started in May with his feeding. His doctors came up with an alternate plan. His NG tube needed to go past his stomach into his intestines. This could stop him from throwing up as his food would never be in his stomach. They fed the tube further in and checked it with an X-ray. It was in the duodenum, the first part of the small intestine; he could safely get feeds now. As they weened him down from TPN and up on his continuous ND feeds, something crazy happened. He started to grow. Not only did he start to gain weight, but he also got hair!

ONE MONTH.
Hey, brown eyes.

Things started to turn around. Evan turned one month old, and as a special surprise, on his 33rd day of life, he opened his eyes for the first time! Only for Maegan, of course, that little flirt. But she snapped a picture for us because she knew I would kill her if she didn’t. He didn’t really do it again for a while, so this sweet picture meant the world to us. Just when we didn’t think he could get any cuter!

Now he was growing to be strong enough for another attempt at surgery and beginning to ween his respiratory support.

“You’re allowed to be here now!”

“My ears had heard of you, but now my eyes have seen you.” (Job 42:5) This is one of my favorite verses in the Bible. Job says this after years of tragedy and hardship. He knew God before and even trusted Him, but it wasn’t until he had been in the depths of the valley that he felt he had truly experienced God. True intimacy with Christ can often only be gained after being in the pit, a place where our need is greatest. I have seen the pit several times in my life, and every time I come out more in love with my God despite the outcome of my circumstances. I thought of Shadrach, Meshach, and Abednego going into the furnace when I considered Evan’s life before he was born and there was so much we didn’t know. I thought about them when I watched my son fight his way back from the brink of death on multiple occasions. I think of them now when so much of his future is uncertain. “And if not, He is still good.” A mother’s love is a force to be reckoned with, but God’s love? There’s no comparison. I am not the one who loves Evan most. I never will be. His Heavenly Father loves him with a reckless, never-ending love that I cannot even fathom. So even in the valley, I will trust and praise Him.

Published by

Brooke Norton

I am a follower of Christ, wife, mama of a medically complex kiddo, and a coffee enthusiast. I have created this space because I feel called to share our story of hope, heartache, and undeniable grace from our good and beautiful God. This will be a space of unapologetic honesty when it comes to parenting my sweet Evan. At times what I say may offend some, but I will shout our truth loudly because that is what Jesus calls us to. This is our story. This is our everyday. This is our Evan.

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