On March 9th, 2023 our son Eli Christopher Kirchner was born weighing 5 lbs. 8 oz. Shortly after birth the Dr. realized that Eli was born without an anal opening, which led to him being rushed by ambulance to the St. Paul Children’s Hospital only a few hours after he was born. The Hospital staff informed us that he would need to have a colostomy surgery the following morning to allow Eli to pass his stools. Surgery went great and he recovered very quickly. During his first few days at the St. Paul Children's Hospital we were told Eli’s next goals were to show the ability to bottle feed and be able to pass his stools successfully through his brand new stoma. Eli was a rockstar for those first several days with both of these tasks. We were loving all of the positive news we were receiving about Eli and felt our days at the Children’s Hospital were starting to become fewer. He was starting to breathe better on his own and they decided to try taking him off oxygen. That next morning we were informed that his oxygen levels were dropping and that he would need to go back on oxygen. The doctors did start to realize that Eli wasn’t gaining the weight that they were expecting him to gain based on the amount of milk he was able to consume. They decided to schedule him for a swallow test the next day and the results that came back from the test showed that while bottle feeding he was aspirating milk into his lungs. Eli's next step was to receive a feeding tube (g-tube) which would help him gain weight and mature a little faster.
After genetic testing we were informed that Eli was diagnosed with having Trisomy 21 (Down syndrome). With this diagnoses we knew that coming home with an infant on oxygen, using a feeding tube, and having to change on an ostomy bag every 3-4 days was going to be very difficult to juggle, but we were welcoming the challenge. His NICU stay lasted 3 weeks before we were able to take him home on March 29th. Since coming home we have had our challenges, but are finally starting to get a system down to help our little guy and reduce the stress around our house. My husband has been able to return back to work full time as a 5th grade teacher. Due to Eli's needs and numerous follow up doctor appointments I have decided to only return part time for the remaining part of the school year as a Kindergarten teacher. The majority of Eli’s appointments are scheduled in the Twin Cities which is an hour and half away from our home. Eli will also be returning to the Children’s Hospital in September to have another surgery to give him his anal opening. After about 3 months he will need to go back in for another procedure to replace his stoma back in his body and hopefully be able to pass his stools through his new anal opening.
As medical bills start to roll in we know that may be a stressful situation for us. Eli still has a long journey and we are excited to help him through it. Any financial support we could get at this time will go a long way to ensuring Eli gets the best care he can get and help him to continue crushing his goals along the way. Thank you for taking the time to read Eli’s story and helping us in any way possible.