Our son, Maxwell, was born in September, 2011 in Madison WI. The pregnancy had been uneventful, so we were taken by surprise when we learned that Max would need to be taken up to the NICU due to having difficulty breathing. We were soon informed that our newborn son was placed on a ventilator and would need to be rushed to American Family Children’s Hospital. We were able to go to the NICU and touch Max’s feet as the hospital staff was scurrying around organizing the specialized transport that Max would need to make his journey across the city.
We were told that Max had been born with congenital diaphragmatic hernia and was very sick. We didn’t comprehend the the severity of Max’s situation until we were shown his x-ray; we saw that 75% of his chest cavity was filled with intestines and that his heart & lungs were pushed completely to the side of his chest. We later admitted to each other that neither one of us expected Maxwell to survive after seeing that x-ray.
Upon Max’s arrival at the American Family Children’s Hospital PICU, his medical team began the intensive battle for Max’s life. Max was placed on a special type of ventilator to keep his lungs expanded and was started on a large regimen of medications to stabilize his condition. The first few days that Max spent in the PICU were full of a lot of difficult moments as he fought for survival. Max’s medical team closely monitored his progress and skillfully responded to each alarm and crisis. During this time, I was still recovering from my emergency c-section at Max’s birth hospital. Max’s surgeon, Dr. Gosain, took the time to visit me to update me on Max’s condition and explain that Max had a 50% chance of survival.
After spending a week in the PICU, Max’s condition had stabilized enough for him to have surgery to correct the hernia. The surgery went very well and then we began to focus on the challenging process of weaning Max from the medications that were keeping him sedated and paralyzed. Max’s nursing team took great great as they transitioned Max off these medications and also counseled our family through this process. The nurses were just as excited about seeing Max move his toe for the first time as we were.
The process of weaning Max off the ventilator and feeding tube was filled with many ups and downs and eventually took over a month. During the 40 days we were at the American Family Children’s Hospital we felt like we had added not only a new little boy, but had also added an amazing team of doctors, nurses, therapists, pharmacists, nutritionists and students to family. Combined these dedicated professionals worked a miracle and gave us the opportunity to have an amazing little boy in our lives, that today is happy and thriving.
Children like Max and families like ours will benefit greatly from the NICU that is being built at American Family Children’s Hospital. The specialized rooms that are planned will allow for the space needed for the equipment to support critically ill children and allow their families to spend those difficult days and nights at their sides.
You never really expect to be the family that needs American Family Children’s Hospital, but if you do, then you realize that sick kids truly can’t wait.