Life with Cystic Fibrosis means daily medication and treatments to prevent lung damage and other prescriptions to treat existing symptoms. Going into our daughter’s first clinic appointment, I was worried that I would be overwhelmed by all of the information and instructions for care that I received.
Less than a week after our daughter was released from the NICU, we were scheduled to visit our local Cystic Fibrosis clinic. Our clinic is located inside one of the city’s children’s hospitals. The idea of bringing our Chronically ill newborn (who was just released from the NICU) into a hospital during a pandemic was enough to induce panic for me. Then, I learned that my husband could not come with me. I was a wreck inside, but I didn’t want anyone else to know.
On the day of our appointment, I packed my diaper bag with the essentials, put our daughter into her car seat, and made the 45-minute drive to the hospital.
When I got to the hospital, I clumsily unloaded the stroller and wrestled the car seat out of the car. I finally got everything put together, and I was ready to make my way to the clinic floor. As we entered the lobby, our temperatures were taken, we were asked what floor we were headed to, and someone let us onto the elevator.
The elevator doors opened on our floor, and we were greeted by bright murals on the walls. I stepped out of the elevator, keenly aware of anyone around me, and I headed to the check-in desk. We were called back immediately. Our clinic nurse greeted us and asked us a few initial questions. After my daughter’s length and weight were taken, we waited for the pulmonologist to see us.
Our doctor arrived and began to explain what he was doing. He checked our daughter’s lungs, felt her belly for any distension, and made sure we didn’t have any other questions. He was kind and understanding. He made sure that we knew that we could contact the clinic with any questions at any time. Before he left the room, he introduced us to our daughter’s dietician.
The dietician had a bag full of medication and other helpful tools. As our nurse used a long swab to take a sample from the back of our daughter’s mouth, the dietician began to explain the things we would need to do to help our daughter grow.
Because of the CF mutations our daughter has, she will be pancreatic insufficient. This means her pancreas doesn’t work well enough on its own to absorb all the nutrients from her food. The dietician explained that we would need to give her pancreatic enzymes before every feeding. These enzymes help absorb the nutrients her body would have otherwise missed. To give her these, we put some applesauce on a spoon, open each capsule, and empty it onto the applesauce. She was less than a month old, and we were to feed her with a spoon. That was counterintuitive, but I knew it was necessary.
In addition to pancreatic enzymes, we were to give her an extra 1/8 teaspoon of salt each day. People with CF lose salt a lot faster than others. This can easily lead to dehydration and other complications. So, adding salt to their diet helps protect muscles and organs from permanent damage.
The last “medication” we were given is a multivitamin. Even with the enzymes, people with CF can still miss some essential nutrients. So, a good multivitamin is fundamental.
Before we left, our dietician gave us a scale to bring home. Many babies with CF struggle to grow and gain weight. So, the clinic wanted us to be able to quickly weigh our daughter and make sure she was on the right track. They also often need to know her weight to adjust her enzyme dosage.
As I had expected, it was a lot of information. My head was spinning, and I could hardly process everything I had learned. I left the hospital with a stroller full of medication, vitamins, and equipment. I knew, at that moment, our lives would never be the same.
If I could give new parents of chronically ill children any advice, I would say, take things as they come. Just take things one step at a time. After our first clinic visit, I knew we weren’t done with new information. I would be too overwhelmed to handle the things we needed to do right then if I worried about that. So, we took it one step at a time.
Here We Go Egan 