Ian Frey Ian the Heart Warrior

First post: Mar 23, 2018 Latest post: May 17, 2024
Dear family & friends,

As many of you know, our family is excited to welcome our second baby boy in mid June 2018. We want to keep you up to date about some new developments that have come up in this journey.

During our routine 20 week ultrasound, the doctor identified an anomaly with our little boy's heart, and we were referred to specialists in Minneapolis for further imaging to identify the issue. The cardiologist diagnosed a "single ventricle heart defect", meaning our baby does not have all four chambers of his heart necessary for circulating oxygenated blood through his body.

This is definitely not a good prognosis to receive and there are no guarantees of success, though outcomes have improved in recent years. Thankfully, this issue was identified early on, so we have some time to prepare and are already connecting with the phenomenal medical team who will be helping our little boy get his best chance at navigating the complex challenges ahead.

So what does this mean right now? Not much actually changes during the pregnancy at this point. I'm still healthy and baby is growing right on schedule. The goal for this phase is simply to keep baby growing all the way up to full term like normal. Currently I'm still seeing my regular doctor, with intermittent appointments with the specialists to check on baby's progress and keep an eye out for any other issues that could develop or become apparent as we go. During the last eight weeks leading into 40 weeks, we will shift over to just seeing the specialist group on a weekly basis. 

After the birth is where it gets more complicated, as baby will need immediate medical intervention and a series of surgeries following birth to survive. The first heart surgery is usually performed within a few days of birth, and the first few months of baby's life are the most uncertain as far as achieving a good outcome. (If all goes well, subsequent heart surgeries are usually done around 4-6 months, and again around 2-4 years old.) In a best case scenario we are looking at around 5-6 weeks in the hospital following that first surgery, but it could be much longer if we run into other complications. 

We are praying, know that God can work a miracle for our baby boy if it's His will, but trusting that He is with us regardless of the outcome. Our family has felt such a deep sense of peace that defies our circumstances, and we covet your prayers most of all at this time. As other needs and situations develop, we will try to keep you all updated here. And if you feel led to help us financially, here's a link to our Go Fund Me page https://www.gofundme.com/57i7rlc/. We're so grateful for your support!

Love, Adam, Melissa & Tristan Frey