Jan 10, 2017 Latest post:
Jan 11, 2017
I felt compelled to start this CaringBridge site for our son Noah Emmanuel in order to more easily share his medical updates and “inchstones” in one place, and to show everyone what a special boy he is.
A little history: I found out I was pregnant in May 2014, a week after graduating from my master’s degree program. Our daughter Rosie and I surprised daddy with this news on Father’s Day. We were so excited and nervous, as all parents are when they learn they are expecting.
The pregnancy was normal, healthy, no morning sickness!, no complications. Delivery, however, was very traumatic. My water broke around 9am on Monday, January 26th, 2009, at 37 ½ weeks. Soon thereafter it became meconium stained and I was admitted to our local birthing suite. Several complications later, Noah was born via c-section on Tuesday, January 27th, at around 5am. I knew that something was wrong because they took him away before I could see him. The last thing I remember was feeling relief at hearing him cry.
Several hours later I was able to hold him and I knew; I sensed in the profound depths of my soul that he was a very special child. A child of God, truly, Emmanuel, or “God with us”.
He had been hooked up to an IV because soon after birth because was experiencing symptoms related to possible infection. This tiny 5 pound bundle had constant tremors that were not improving with time and he was soon sent to Children’s Hospital in St. Paul. He spent a couple weeks in the Neonatal Intensive Care Unit (NICU) before being discharged home.
The next several months were, in retrospect, peaceful and calm.
However, at 5 months old, in May 2015, he was admitted to the Neuroscience Unit at Children’s Hospital and was diagnosed with partial complex epilepsy. The MRI was showing residual brain damage from birth, and the EEG was going crazy. Our boy was being attacked by constant seizures. His medical journey began at this point. Medications, appointments, therapy, sadness, anger, grief.
By January 2016 he had not met any major milestones. Then, the week he turned a year old he was diagnosed with spastic quadriplegia cerebral palsy.
Several months later, in June 2016, he was admitted to the Medical Surgical unit at Children’s for failure to thrive. He just wasn’t able to eat enough, and it was discovered that he was aspirating on thin liquids. Eating was causing him pain. In October 2016, he was admitted to the Neuroscience Unit due to uncontrolled seizure activity and continued difficulties with weight gain. He was put on new medications and an ng tube was dropped through his nose and into his stomach. At that point all of his nutrition was provided through that tube.
And here we are again. The journey continues. On Tuesday, December 6, 2016, our baby stopped breathing. My husband gave him the life saving breaths he needed, called 911, and called me at work. I arrived to our driveway at the same time the paramedics arrived. He was immediately transferred back to the Neuroscience Unit at Children’s. He was diagnosed with laryngomalacia, basically a floppy airway. His body, because of low muscle tone/SQCP, was obstructing his airway and basically starving him of oxygen. His oxygen saturation levels, which are normally in the high 90s, were dipping into the high 50s. He was put on high flow oxygen and his epilepsy medications were adjusted because of unwanted side effects, mainly increased secretions and agitation. He seemed to be doing better. Soon thereafter he suffered an aspiration pneumonia that went septic. Complications upon complications landed him in the Pediatric Intensive Care Unit (PICU).
And here we are: surgery. Words cannot describe the complex emotions surrounding this word. I hope that, with time, this page will allow me to more fully express how brave and strong this special child is to the world and that impossible is nothing.