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September is NICU Awareness Month

I’ll be shifting from a blended specific topic for this one, but it’s September and this is a topic that is near and dear to my heart. If you have never had or visited a child in the NICU you really just have NO IDEA how amazing these places or the doctors and nurses that staff them truly are. It really is a life-changing experience. If you are a NICU mother, I encourage you to share your story. My life as a mother, as the woman I am today, started on December 20, 2007, when my firstborn became my NICU miracle.

The Day My Life Changed

I was 12 weeks along and at the OB for some genetic testing that happened to include an early ultrasound. How exciting, right? Wrong. I’ll never forget the face of the tech and how it changed as she rolled that thingy over my belly. My heart started to race. I kept asking her what was wrong, but she just kept saying, “I’ll have to go get the doctor.” The two minutes it took her to grab the Dr. felt like an eternity.

The doctor walks in all somber and says, “You see those things there (pointing to the screen)? those are the baby’s intestines…and they are outside of the abdominal cavity. It’s a condition called Gastroschisis, and unfortunately, this defect looks rather large.”

I didn’t hear anything she said for the next few minutes. I thought I would be sick. What the fuck did she mean his intestines were OUTSIDE?!  I had no idea this was a thing that could even occur. I was 23, I knew nothing and honestly, I hadn’t exactly planned this pregnancy. I just remember hearing her go on and on about the risk of fetal death and the quality of life etc. and suddenly it registered to me, “Was this woman trying to tell me I should end my pregnancy?” I could feel the chunks rising in my throat. I immediately decided I wanted a consult with pediatric surgery at University of Michigan Mott Children’s Hospital.

The hospital was about an hour from my home. While that consult was terrifying as a young, first-time mom, they made me feel like it was possible that I could do this. I owe my son’s life to these people. Thank you, Jeanie, you will never know what you mean to me.

These Preemies are Tough as Nails

Lucas was born via an emergency c-section at roughly 33 weeks. He was 4 pounds and 2/3 of his small intestine laid outside of his body. This photograph a doctor took is the only glimpse I had of my boy until I saw him for the first time 7 hours later. It is an odd feeling to carry a child, give birth and not even lay eyes upon it after its cut from your body. It is an emptiness I will never be able to accurately describe. Thank God for the Ronald McDonald House of Ann Arbor which allowed me to stay on the campus grounds while my son was in the NICU for a month and a half.

When I finally saw Lucas, there were so many tubes and lines attached to his tiny 18″ body. He had a vent tube, a pic line, a central line, a feeding tube, and an NG tube. Let’s not forget about all the leads attached to monitor his oxygen, blood pressure, heart rate etc. It was so fucking overwhelming. I had no idea how I was going to get through it. Then it hit me, I didn’t have to get through shit. This tiny 4-pound human had to do it all, and there was NOTHING I could do to help. Helplessness as a mother is the fucking devil.

Not Today Satan

At one point the doctors said they believed a large part of Lucas’ intestine was too damaged and would never function. He was to have it removed after his closure surgery. The intestines were so damaged by the amniotic fluid that they would need time to heal before they could be cut and sutured. The doctor equated them to a wet paper towel at the time.  They said he would have short gut syndrome and would be tube fed forever. I swear, I could feel my heartbreak in half. I was so angry with God. How fucking dare he! It was not a pretty time in my life.

Eight days after his birth they were able to get all his guts inside and close his muscle and abdominal wall. I’ll never forget kissing his tiny head and watching them wheel him through those operating room doors. It was all I could do to keep on my own two feet. What if that was the last time I saw him? I had never even held him. The next few hours felt like days. Lucas is a rock star and came through surgery fine. He only needed a couple transfusions. They were even able to make him a belly button (something most Gastroschisis kids don’t have).

The next few days were the hardest of my life. My kid had been knocked out since birth basically and he had experienced so much trauma. They didn’t really want you to even touch him thru the bassinet glove things. It was too much stimulation. I worried about the next surgery to remove his guts. I dreaded it, is more accurate. I barely slept or ate. Thank God for his nurses, they kept me sane. They forced me to take care of me as well. 11 days after Lucas was born I was able to hold him for the first time. He was still attached to so many tubes and wires, but it was still the best feeling in the world.

Then a miracle happened. Lucas just kept pooping, so his nurse requested an upper GI function test be ran. I’ll never forget that call she made to tell me that his guts were functioning!!!! He wouldn’t need another surgery and they would start tube feeding him ( like 5mL) later that night. He had been on IV nutrition up to this point. It was like God was like, “Chill, I got this.” The doctors couldn’t explain how it had happened. This experience with my son renewed my faith in God.

 

Life After the NICU

I was able to bring Lucas home after a month and a half on a feeding tube and several medications.  He was a whopping 5 pounds. His intestines were damaged and were not able to break things down properly at first. He had a prescription formula to solve that for a year while his guts healed. The feeding tube was temporary.  We were able to move to full bottle feeds within a month.

Life outside of the hospital was an adjustment. It sounds silly, but I didn’t know what to do with myself and I missed Lucas’ nurses. Those ladies held my hand through some of the darkest days of my life and I felt lost without them. I checked on Lucas like every 5 seconds and basically spent the next year waiting for the bottom to fall out, but it never did. My son is my hero and championed every mile stone and every set back.

11 years later and he is a happy, healthy boy. Aside from some abdominal discomfort, he has had no real problems. There are things we need to watch for, but everyday life for him is normal. The NICU gave me a new appreciation for those things we take for granted. It humbled me, brought me to my knees in a way that I must have needed. I wouldn’t be who I am today without Holden NICU, without those Nurses. My son wouldn’t be who he is today.

His experience has helped other families. Lucas’ photo and a small story hangs on the walls of the NICU as part of a photography project called “The Walls of Hope.” The idea is to give parents pacing those halls the hope that things can and do work out. As a NICU parent, hope is what keeps you going, it’s what keeps you from curling into a fetal position and crying. Hope is what pushes one foot in front of the other in the NICU. Lucas has been doing that for families there since his picture was hung in those halls 8 years ago. How fucking cool is that?

What I used to curse God for was actually one of the biggest blessings in my life oddly enough. I wouldn’t change a thing about it even if I could.

To his primary nurses: Kim, Mary, Christine, Becky: you will forever be our angels.

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