I have not posted an update in quite some time (since January)! What better time than the one year anniversary of when Maeva’s heart journey began. I get asked often “Wow, Maeva looks to be doing so good! She must be all better?”. My response to that is something like “Yes, she is definitely thriving! But, we are not through it yet.” 

It has been one year since that awful nightmare of a day. We think about that day frequently which causes us to praise God frequently for preserving her life. A year ago today we would have never imagined the journey we would go on and still be navigating. It has caused us to trust God daily when we don’t have all the answers or when we are caring for Maeva to the best of our abilities. 

This past year has brought many highs and lows. The highs stick out to me more though because there have been so many wins! Maeva has seen the cardiologists in Des Moines every month for EKGs and heart echos. She’s also worn a 48 hour heart monitor every month to get a snapshot of her rhythm and heart rate. Within the last year, we’ve been able to continue to completely suppress all arrhythmias with medication which is amazing!  The heart echos (an ultrasound of her heart- which Maeva is a pro at sitting through as a 2 year old) have continued to show dilation of her left ventricle. It has improved some but lately has not gotten any better or worse (2 standard deviations from normal). We are so thankful for a wonderful pediatric cardiology clinic here in Des Moines that works closely with our U of I cardiology team so that we don’t have to drive to Iowa City for appointments!

As far as caring for Maeva at home, within the past few months we’ve been able to wean her from 4 medications to 3! At our most recent appointment we’ve decided we are going to move forward with weaning another medication! This is both nerve-wracking and exciting. Our prayer is that as we wean this third medication, we don’t see any arrhythmias come back. This leaves her with 2 medications that she takes around the clock (yes, still waking at midnight to give her medications but thankfully she is a champ and literally sleeps through it😴). One is for her heart muscle and the other is for vtach. It will be many more months or even years until those are completely weaned. Our prayer is that she has grown out/will grow out of every heart issue by the time she is weaned from everything! 

Overall, Maeva is a happy, kind, sweet, smart, brave little 2 year old and we thank God constantly for her life. Maeva does so well with everything we do to care for her. She isn’t even slightly bothered by wearing the heart monitor, takes her medication effortlessly (even reminds us when it’s med time), sits through scans, and loves to listen to her own heart with the stethoscope. Maeva loves to read, go to the library, pool, and parks, take care of her baby dolls, and play with friends. She fills our lives so full of joy and all we can do is praise God for her.  

Thank you for your continued prayers for Maeva. Please continue to do so! Our constant prayer is that God would completely heal her heart of every issue. ❤️