Heart Hero of the Month & Omaha Superhero Heart Run Ambassador September 2023
Story by, ❤️Karissa & Matt
Hello! We are the Folcik family! We live in Hastings, NE. My name is Karissa, and my husband is Matt. We have three children: Lydia-5, Micah-4, and Ezra-2. Matt is a pharmacist and before having Ezra I worked full time as a labor and delivery nurse on nights. After having Ezra, we made the decision for me to stay home with the kids and only work PRN. We felt if we were able to make it work, it would be better to not have the kids in daycare.
We found out about Ezra’s heart defect at our 20-week ultrasound in January 2021. He was later diagnosed after multiple fetal echos with complete AVSD, DORV, pulmonary valve stenosis, dextrocardia, heterotaxy with asplenia (a complex heart defect). This was then confirmed after birth. No parent ever wants to hear those words, “Your baby has a heart defect.” We took it upon ourselves, with the help of Children’s and our amazing MFM team at Methodist, to get prepared as best we could over the next few months. We talked to multiple doctors, surgeons, social workers, and others beforehand. We planned for the worst and hoped for the best.
Ezra was born on May 19, 2021. We made it full term, but we did deliver in Omaha, so he could be transferred to Children’s right away to be monitored closely. Ezra did great, we were only in the NICU for 9 days and then got to go home so he could grow before having to have any surgeries! We were so thankful for this! Although, it was a little nerve-wracking. We were constantly watching for signs of respiratory distress or hypoxia. We had oxygen at home for night use and then for “just in case.” We were told to not let him get too worked up to try to prevent any “tet-like spells.” This was very challenging as we also had a 2- and 3-year-old at the time.
When Ezra was 1.5 months old (early July 2021), his oxygen level was dipping from time to time. We notified cardiology and they wanted him seen, so we packed up and drove the 2.5 hrs. They did an echo and found that his pulmonary stenosis had worsened. They did a heart cath and valvuloplasty that night. He stayed 2 nights as he lost quite a bit of blood during the procedure. It helped for a couple of weeks, but then he started having more and more blue spells. On July 15th, 2021, in the middle of the night, he had an episode where we couldn’t get his oxygen levels up. His O2 sats were in the 40s. We took him to our local ER, where he was transferred via fixed wing to Children’s. A few days later he underwent his first open heart surgery, where they placed a central shunt. He had some complications with clotting during surgery, but he did make it through and to the floor to recover. That night he went into cardiac arrest where they coded him for 45 minutes and emergently placed him on ECMO. This was the scariest night of our lives, and we truly did not think he would make it. We relied on God and our faith and that is why we believe Ezra is with us today. A true miracle! Ezra was on ECMO for 4.5 days and continued to slowly improve every day. He had a few setbacks but made a full recovery! We were in the hospital for 33 days.
Ezra ate and grew well at home, being monitored closely during this interstage period. We recorded how much he ate, weighed him daily, and gave Lovenox shots twice a day. He had his scheduled Glenn surgery in January 2022, and had a much better recovery! We were only inpatient for 5 days!!
The past year cardiac-wise, Ezra has been doing well. We see his cardiologist every 6 months. Because Ezra does not have a spleen, he is considered immunocompromised and whenever he has a fever, we must take him to get labs drawn and treat him with prophylactic antibiotics. If he ever has a certain type of bacteria, he could decline very fast. We had to take him to the ER a couple of times due to it being in the middle of the night and the clinic being closed and therefore got transferred to Children’s and observed inpatient. We would much rather be safe than sorry and are always so appreciative of the great care we receive at both hospitals!
Ezra continues to do well at home. He is hitting all his milestones and is trying his best to keep up with his older brother and sister and copy their every move! He is VERY ornery and likes to push the boundaries!! He knows his little smirk usually gets Mom and Dad to say yes!
We are so grateful for Heart Heroes. And although we didn’t ever plan or think we would be in a support group for CHD, or “heart parents,” this community is so awesome and so unbelievably helpful to not only the heart warriors but their families as well. We love all the special events that they put on, and so grateful we get to cherish them with Ezra, because unfortunately not all “heart parents” get to do that with their warriors.
