Kai Michael’s Story - Congenital Diaphragmatic Hernia

I'm Nicole and the mother of our sweet CDH warrior Kai Michael. Our story began when Kai's father, Tory, and I found out we were pregnant in August 2021. Kai is baby boy #5 for me and #1 for Tory. Our pregnancy was great. Lots of morning sickness, but other than that, it was a great pregnancy! On November 24, 2021, Tory and I were anxiously waiting for our 20 weeks scan and just waiting to find out if he was a boy or girl. My sister Heidi was waiting outside the hospital for the ultrasound picture to rush home and prepare our balloons for the gender reveal. Our family was so excited to see if we would finally have our baby girl or if he would be the 5th boy. Our scan began with a telehealth visit from a specialist in Rochester who was there to focus on the uterine wall issue that I had from the prior c-sections. Little did we know that our scan would not focus on the uterine window, but to be told that our baby boy had a left-sided Congenital Diaphragmatic Hernia. Both Tory and I had no idea what CDH was. I was lying on the bed and listening to the doctor on the telehealth tell us that he was so severe that we needed to find or relocate to one of the seven states that did the FETO procedure as the odds of our baby boy surviving were very slim. I also remember hearing the doctor say termination, and I looked over at Tory and just bawled. I knew that no matter the results, neither of us was okay with terminating. I was so sad and scared about what our baby boy would encounter. For the next 3 weeks, we both researched, cried, and prayed for a miracle. After the scan, we returned home to our gender reveal to find out he was another boy. Tory was so lost that he cried and said he wouldn't ever be the same if he had to bury his first and only biological child.

Fast forward to December, when we were sent to Rochester to see a specialist. When we arrived at the specialist, we were told about two different hospitals that offer FETO, and we had to choose which one we would pursue. During this time, we also had to deal with my older four sons' biological dad passing on Christmas Eve. We ended up choosing Children's in Houston, Texas. This meant that we completely wiped out our savings account and drove 19 hours in 2 days to get an MRI and scans of baby Kai to see if we were candidates for FETO. After we left our first day of scans, the doctor called us to tell us that we did not qualify for FETO. His measurements were not as low as what Minnesota had told us. We then returned home and did weekly visits in Rochester with our specialist.

At 32 weeks, I told Tory I believed I was in labor. He rushed me to Mankato, where they found that I was in preterm labor. I kept contracting, and the doctor didn't feel confident about sending me in an ambulance, so I was airlifted to Rochester to prepare to bring Kai into this world early. Thankfully, they stopped the labor, and we returned home after three days in the hospital on February 8th. I found out I was diabetic and was focusing on that and baby Kai for the next four weeks.

Fast forward to March 8th, I had just left my specialist's office and got home around 2 pm after many appointments that day. We were scheduled for our c-section on March 22. Little did I know, after getting home, my water would break around 4:30 pm, and at 7:06 pm, we welcomed Kai Michael weighing 6 lbs 1.7oz. He let out the tiniest cry and was whisked away. The emotions of not knowing how he would do were the hardest. We got to see him for 5 mins before he was transferred to a level 4 NICU three miles away from the hospital we delivered him. After he was transferred, we were finally able to see him.

The next three days were the hardest. On day three, they called us to have a team meeting to discuss ECMO. His hypertension was so high, and they weren't sure his body could handle it anymore. Thankfully he didn't need ECMO in the end. He was able to come out of the woodwork and fight as a warrior. On March 14th, Kai had his repair surgery. Those hours of waiting to hear how he did were gut-wrenching. He came out of the surgery amazingly! He didn't need ECMO or a chest tube. He was a complete warrior! After 11 long days, Tory and I walked into the NICU to find it much quieter. Kai ended up getting off the vent and was on CPAP. Yay! That was the first day that we were able to hold him. What a blessing! I melted into happy tears. To finally hold this handsome boy of ours was great! From there on out, he thrived. He was making so much progress in such a short time. He nursed like a champ and was quickly getting off the NG tube. After 41 days in the NICU, on April 16th, we brought him home without any additional medical support to meet his brothers! Since bringing him home, we have battled with poor weight gain and nothing more. To think back to November 2021, when the doctors told us to terminate, to now a happy, healthy, thriving little boy is such a miracle. For all of those parents having to endure the same battle we did with CDH, don't lose hope. We have learned that CDH has a wide variety of outcomes. The numbers listed are just that, numbers. These babies we are blessed with are warriors and so much more! CDH will forever be something our family raises awareness and funding for! Prayers to all CDH warriors and angels in this world!