Ezra’s Story

Site created on October 3, 2022

Thank you for stopping by. This site will be primary means of keeping everyone updated on what is going on. 

Back in June at our routine ultrasound they discovered abnormalities with the heart and we were referred onto a maternal fetal medicine OB several hours away. Unfortunately they confirmed the abnormalities as a single ventricle defect at that appointment in July.

Since then we have had more appointments both with that ob and in Omaha where we will have the baby and receive treatment for baby. The diagnosis has changed a bit, however it’s always remained single ventricle. As of now we await the echocardiogram after birth as that echo will be the most clear and precise regarding what is going on with the heart.

As of now the diagnosis stands as DORV with a Hypoplastic left ventricle.

Current plan is induce on October 27th. Baby will be monitored for a time ≈ a week, as pressures go down. At which point baby will likely go into surgery to band the pulmonary artery. Some time after that we will be discharged home and begin interstage care at home coordinated between several doctors’ offices.

Then we will come back to Omaha for a surgery at roughly 4-6 months—exact timing depends on baby, could be sooner or later but generally within that range. With an anticipated 2 week hospital stay. Then we go back at 2-4 years for the final of the staged surgeries.

This will rewire the blood to flow from heart to body to lungs and back to the heart. With only one ventricle it doesn’t work to send the blood to the heart twice to get pumped as baby only has one good pumper.

Michelle and kids are already in Omaha in advance of the birth. Ben will be joining them soon.

Newest Update

Discharge and a Special Birthday

Journal entry by Michelle Venteicher —

We did leave the hospital on August 17th. Our cardiologist commented that he was glad to see I was happy with discharge. He had tried to discharge us when we were there in the spring but I wasn’t convinced that he was ready and the day they were trying for discharge was the last time they sent him to the cath lab before coming home two weeks later. 

We weren’t home very long before we came back to Omaha to celebrate his Great Grandma’s 100th birthday! My (Michelle’s) whole family came out for the celebration and we got to see lots of aunts, uncles, cousins, and grandparents. It was good to see everyone again!

We’re all thankful to be home again now. Going from 7 days in the hospital right into a bunch of time with family was hard with a clingy baby. Now that we’re home we’re starting to see just how good this little guy is feeling. He’s had none of his GI symptoms return and is turning into quite the active and talkative 10 month old! He hit 10 months on the 26th. 

Today we met with people from our local school district to finish getting set up with head start. We’ll primarily be focusing on motor skills with a physical therapist that will come to our house a few times a month. We will also continue to see a feeding therapist. We’re hoping to start making some actual progress with feeding now that he’s feeling better. 

One of the best developments of our hospital stay was finding a formula he tolerates, allowing me to finally wean from pumping. I had wanted to quit a couple months ago but he could only tolerate breast milk. Pumping has consumed our days so it’s wonderful to have breathing room in our days again. 

Thanksgiving:
  • Ezra’s GI system is feeling better!
  • Weaning from pumping. 
  • Time with family. 

Prayer Requests:
  • He continues to do well as we wean off a medicine. 
  • He doesn’t pull his button out in the first 12 weeks of having it causing an ER visit (we’ll learn to place it after 12 weeks).
  • He starts hitting motor skills milestones.
  • We get our school year started with good attitudes!
  • We stay out of the hospital for quite a while, going in every 3 months is getting old!
Read More of the journal titled "Discharge and a Special Birthday"
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