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Release: A NICU Fairytale

I was in the NICU with my daughter, Charlee for 48 days. It was not a good place for us. After Charlee failed a swallow study, it was determined that she needed a g-tube. That surgery was hard on her. After that, doctors ran a sleep study. Computers recorded indicators of airway obstruction and with that data, NICU doctors urged us to consent to a tracheostomy for Charlee. We didn’t feel Charlee could handle another surgery and we declined. We were discharged shortly after. Within twenty-four hours, we were back in the emergency department. Admitted to the PICU, they found that Charlee had a collapsed lung caused by a pleural effusion. The computer had misread her shallow breathing caused by the condition as obstructions. She didn’t need the trach after all.

I was upset that a collapsed lung had been missed in the NICU. I was upset that the recommendation of the trach, a decision so weighted for our family, was not more carefully considered. And I was upset at how it felt like the NICU washed their hands of us because we declined the trach. I didn’t have time to voice my anger because I was consumed with round the clock care Charlee required at home and preparations for neurosurgery. Charlee had a condition called hydrocephalus in which excess spinal fluid was building up and putting pressure on her brain. Like the providers in the NICU, we didn’t feel like decisions made were right for Charlee. We were running out of time and proceeded with the recommendations of the neurosurgeon. An attempt to surgically create an opening in the floor of the third ventricle failed and we were back in the emergency room ten days later for a shunt placement. I felt like everything that I had to hold in was going to explode if I didn’t get it out somehow.

While Charlee was recovering in hospital, a family support worker had dropped off a care package. It included a sketchbook and colored pencils. While Charlee slept, I drew ships rolling in whirling waves and clouds playing in the wind. It was a good distraction, but then I drew out a cartoon poking fun at the hospital culture to vent my frustration with the lack of patient space it provided. It felt really good. After that, I started to draw out Charlee’s NICU story in a graphic novel format. As the story started pouring out of me like an opening dam, I felt my anger lifting. It allowed me to work through what transpired during our time in the NICU. The more I worked on it, the more I felt I took back control over the events that happened to us. And I felt like I found some beauty in those traumatic events as the love and devotion we had for Charlee shined bright through the darkest moments of the story. I called the book Release: A NICU Fairytale ultimately because it was about Charlee’s release from the hospital, but also about the release of emotions this project gave me.

#NICU #Trauma #MedicallyComplex #MedicallyFragile #Healing #medicalmama #Disability


Thoughts on #Prematurity #NICU (#ADHD #LearningDisabilities #Anxiety and more...)

Hi so these are just my thoughts but I came across the Preemie Survivors group because this is something I think about very much today... and it's been nearly 27 years since I was born and living in the NICU for the start of my life!

My twin sister and I were born 10 weeks early (at 29 weeks gestation I think) and in the wRONG STATE (my parents were house-hunting in another state from the one they were living in)... yeah, lots of #Trauma for my perhaps, but honestly, it was during trauma therapy recently that I've come to realize the trauma it may have had on me... even if it is a trauma I cannot remember.

Anyone have thoughts on this?

I also wonder and believe that some of my and my twin's developmental challenges (if not all) are due to the birth, including being born with severe anxiety in my case as well. I grew up to have more trauma and mental illnesses later and I know some of it may run in the family/be genetic, but I do think my birth plays a role, most certainly.

I want to write an article about this!!


My miracle son #Arthritis #Preemie #mom #Awareness #Kindness #ADHD #NICU #Parent

This is my awesome son, Sam. He has fought many battles,being born three months premature and only weighing 1 pound 13 ounces. Being diagnosed with adhd, fine motor, gross motor and speech delays, sensory integration disorder at a young age. And a couple years ago diagnosed with juvenile arthritis. He’s the most awesome and toughest boy I know. He always has a cute smile on his face and is the kindness little boy I’ve ever met. My miracle and hero……. My son. This is a link to a beautiful story our local newspaper did. I hope it brings hope and inspiration to others ❤️

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2 Weeks Old!

"Rhett was born on January 30th, 6 weeks early. He came into the world by storm and was projected a 6 week NICU stay. Baby man exceeded all odds and was out in 2 weeks and 2 days. Mom is a nurse. Dad is a small business owner. We have 1 dog, Molly, and 2 cats, Newt and Lacey. We are so excited to see where life takes Rhett!"
—Rhett's mom, Lauren
#DownSyndrome #NICU

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Meet Heart Warrior, Lane!

"Lane was born at 37 weeks and had surgery at 2 days old for an intestinal blockage followed by 51 days in the NICU. He recently had open heart surgery and is now home recovering. Big brother waited 9 whole years for his little brother and could not be happier!"
—Lane's mom, Devon
#DownSyndrome #NICU #heartwarrior #HeartConditions


My son is a miracle, yet I keep crying. #NICU #PTSD

Buckle up! Haha this is going to be a long one.

On March 20, 2020 our 3rd son, Greyson, made his entrance to this world 2 months earlier then expected. He wasnt moving so i dropped my other 2 kids off at my best friends house & went to my hospital for a non stress test. His heart rate was fine but he was not moving.

My husband was working away at the time so i text him to start the long drive home immediately followed by my phone dying. I used the hospital phone to call my mom before I was whisked away to the city hospital 2 hours away in my 1st ambulance ride. Looking back now, I was so calm. I hadn't grasped what was really happening. When it did all start happening, it happened fast.
Within 20 minutes of arriving Greysons heart rate dropped from its steady 158 to 60. I was rushed down for an emergency surgery where his heart rate dropped to 50 as i was put to sleep and then stopped completely. The team had to resuscitate him for 6 minutes before he came back to us. Im so so so glad I was asleep for that part, because I know those 6 minutes would have been a lifetime.

My mom arrived while they were working on Greyson and she filled in the blanks from her perspective for me. She said the nurse was talking like he wasnt going to make it. My mom called the friend who had my other kids, who had been left completely in the dark, and while on the phone my mom was told they got Greyson back.

When I woke up I asked the nurse if he was OK- I don't remember ever getting an answer. She kept asking if I knew where I was, it took a few minutes but the puzzle started to fall into place. I asked if my mom had arrived - hearing her voice and feeling her hand meant I wasn't alone any more and I could finally stop holding it together. I got to see Greyson before they took him to the NICU and I was taken to my room. My mom took that first photo of him, 3lbs 10oz. His fingers still blue from the trama.

My husband arrived late that night, and I barely remember it because of the anesthetic. I do remember seeing him and loosing it again. My night had become periods of sleeping and crying.

The next day I got to see my baby. Feel his tiny toes and fingers. All the wires and tubes. So fragile. Greyson was having brain seizures due to the lack of oxygen at birth. No matter the medications, they would still come. Mostly at night and last between 5-12 minutes.

They sent him for an MRI and the results were not good. The director of the NICU pulled my mom & me (hubby was home now with the kids) and said Greyson had moderate-severe brain damage. That he would probably never breath, eat, walk, talk, comprehend on his own. The dr asked us to consider comfort care - let him go peacefully. I was numb. Shocked. My mom sat beside me a sobbed at the news. She held onto my arm and hand. I hadn't seen my other 2 children in 4 days and hubby had already told them I was coming home. The snow had started. My mom asked me what I wanted to do. I wanted to go Home.