‘I will never forget the look on my parent’s faces. ‘I wish I could take this pain away from you.’ All I wanted was my baby.’: Mom recalls shock of infant’s stroke and seizures, ‘He is still perfect and he is all mine’

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“12 years ago, in December, I was moving around my house 9 months pregnant, anxious, excited, exhausted, and very much ready to bring home my brand new, smells so good, lovable, want-to-squeeze-him, baby boy. I had no idea what the next week would hold for myself, my family, or my brand-new baby.

Ian was born on a Wednesday. December 10, 2008 at 7:48 a.m. by a scheduled cesarean. As I lay in the hospital bed, getting prepped for surgery, Ian had the hiccups. He rolled around and my hard-as-a-basketball stomach contorted and I remember thinking soon enough I would be able to hold him in my arms instead of my womb.

Ian was a whopping 8 pounds 14.8 ounces and 19 inches long. Such a big baby. He was beautiful. 10 fingers… check. 10 toes…. check. Yes, this is what I had been waiting for.

Courtesy of Nikk Johnson

They hold up my baby for me to see and then quickly swoop him away to the next room as I lay in the operating room. I had business to tend to. You know, a few stitches here and a few staples there. I could hear Ian crying from the next room. To me this was a welcome sign. A wonderful sound. Little did I know, the doctors were somewhat alarmed at the pitch of Ian’s cry. Apparently, babies in distress have a higher pitched cry than those of babies who are not.

The next few hours are a blur. I’m wheeled back to my room without my baby. Nurses come and go; doctors come and go. Finally, a doctor says to me, ‘Maybe Ian was having a hard time clearing out all the fluid in his lungs.’ This proves to be difficult for babies born via C-section. They were watching Ian’s oxygen levels and were hopeful that by the evening Ian would be in the room with me. I was comforted by this thought. All I wanted was my baby to be with me.

It was nearly 6:00 p.m. before I got to see my baby for the second time. I was helped into a wheelchair and taken down to see him. He was just as beautiful as I remembered from my drug-induced state from 11 hours earlier. Except this time, he had Band-Aids, wires, and tubes stuck to him. One Band-Aid stands out in my mind. He had one on his forehead. Apparently, this is the best/easiest location to place an IV on a baby. Well, not my Ian. The nurse leaned over and placed Ian in my arms. At this point he was only eating sugar water. I fed him, hugged him, kissed him, and checked him out… over and over and over again.

Courtesy of Nikk Johnson

Thursday rolled in and still no baby in the room with me. At 11:00 a.m. my mother and I strolled down to the cafeteria. I just wanted some chocolate milk. Upon returning from the cafeteria I see a man I do not recognize standing over my son in the nursery. I press the button to let myself into the room and start to ask questions. What’s wrong? Who is this guy? Why is he here? He was a raspatory therapist. Ian had had his first seizure. He had quit breathing. My insides instantly melted to mush. What do you mean he had quit breathing? Why was this happening?

Over the course of the next 2 hours, he had more seizures. His little baby lips would turn ashy and blue. I sat feeling hopeless and helpless as I watched nurses poke, stir, and attempt to arouse my baby. They did scans, x-rays, and even gave my one-day-old baby caffeine through an IV. This did nothing except make him mad. He screamed and screamed. I leaned over his bed and picked him up. Pleading to the nurses to help me hold my baby. As soon as I picked him up… he stopped screaming.

Courtesy of Nikk Johnson

I could hear the scattered and frantic talk among the nurses and doctors. Nobody knew what was going on or why. Then I was told something that made me feel even more helpless and hopeless. They were calling the NICU in Wichita. Wesley hospital staff were already on their way to pick up my baby.

I had to stay. I couldn’t go.

I will never ever forget the look on my parent’s faces. The firm and wise face of my father. The ‘It’s all going to be okay, baby’ look and the worrisome, pained, ‘Wish I could take this pain away from you’ look on my mother’s face.

Over the next 2 days, my mother was my voice. She followed Ian without hesitation. She slept in waiting rooms after crafting a makeshift recliner with uncomfortable hospital chairs. My father sat with me in my room at the hospital. Trying everything he could to take my mind off the scary thoughts. Attempting to encourage me to think positive. To pray. Oh, good Lord, did I pray! I never have prayed for anything so hard and earnestly in my entire life.

Lord, please take care of Ian. Give him strength. Lord, give me peace, Lord help my baby.

I finally made my way to the NICU at Wesley on Saturday morning. I left, staples intact and moving slow. Very slow. I scrubbed up to my elbows at the giant sinks they have outside the NICU. Covered myself in a gown and walked in the dimly lit room filled with babies. Other people’s prayers.

There he was, wrapped in a blanket. The biggest baby in the NICU. My little Ian. He hadn’t had a seizure since Thursday night. Once they started him on Phenobarb, the seizures stopped. Praise Jesus. Thank you!

Courtesy of Nikk Johnson

Over the course of the next few days, I still had so many unanswered questions. Then I met a short and very blunt man. Ian’s neurologist. He sat on a stool in the NICU across from me. Short enough to be able to swing his legs like a child while sitting on the stool. He proceeded to tell me my little, brand new, lovable, just-want-to-hold-him-and-squeeze-him baby boy had suffered a Left MCA infarct.

A what!?! What is that?

A stroke. My baby had a stroke. No one knew why. It just happened. No specific reason anyone could pinpoint. Only guesses. At my young age of 22, I knew very little about strokes. I only knew enough to see the vision of my perfect baby boy fly straight out the window, as quickly as the words flew from his mouth.

I didn’t realize this then. But… Ian is still perfect. He is wonderful, amazing, beautiful, smart, active, ornery, and loving. Most of all he is a fighter and my hero. He is exactly who he is supposed to be. He is an awesome and amazing gift from God. I love this little boy with every fiber of my being. He is my teacher. He has taught me so many things in his almost 12 years of life. He has pulled strength out of me I didn’t know even existed.

Courtesy of Nikk Johnson

Have things been challenging?

Yes! Have I cried?

A thousand times, but during and after the challenges and tears, I see a determined little boy. A soccer player, a little boy that absolutely loves roller coasters, a little boy whose favorite color is green, a boy who adores his older sister, a boy who likes dinosaurs and bath time. I see a… a perfect little boy. And he is all mine.”

Courtesy of Nikk Johnson
Courtesy of Nikk Johnson

This story was submitted to Love What Matters by Nikk Johnson. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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