Rainn’s Story

Site created on September 6, 2020


Baby Rainn is going to have his heart customized. Why? Because he has a single ventricle heart or what is called Hypoplastic Right Heart Syndrome. This is a sporadic and rare congenital heart defect. Basically, his heart formed with the right chamber being to small to support his life. After he was born he had non-surgical procedure to put what is called a PDA stent in to support blood flow of his heart. He was hospitalized in the NICU for 11 days after birth. 


After two months, he was rushed to the ER due to an arrhythmia staying 5 days in the hospital. Then 11 days later he went to the cardiologist for a routine checkup. Then Rainn was admitted and given an emergency procedure. This procedure was a larger stent placement to keep his PDA valve open until his scheduled open heart surgery. 


At 4 months of his life he will need a surgery  called Bidirectional Glenn. Then another surgery called Fontan at age four. Yes, that is 2-3 heart surgeries by age four. 


He will hopefully go on to live a perfectly normal life like most kids. The journey getting there is going to be difficult. We are going to need lots of love and support from friends and family. Normally, we don’t like being open about our problems but this is the exception. We need our community. We love and appreciate you. Your prayers, kind words and the simplest of reach has helped us so much. 


Thank you. 

Newest Update

Journal entry by Anna Bass

Throughout this experience in PCICU, we have had many wonderful friends and family reach out to us asking what they can do. This has been so very touching and appreciated. If you would truly like to do something for us, please contribute to our cardiac community.
 
Spending an extended amount of time in the cardiac unit, there is something we’ve noticed. Many other families are there day after day also... some children alone without family, for one reason or another.
 
One nurse created a closet space full of things for our cardiac children to make life feel a tiny bit more normal. This closet is full of clothes, toys, blankets, lovies and other gifts to comfort these kids. All donation based. We have been given many gifts and want to do our part to give back. If you would like to join this effort please consider donating to Margaret’s Closet. Below I am leaving a link to her Instagram account that has links to Amazon and Target. You can donate, send a sweet note and have these ideas mailed directly.
 
Thank you. We love each of you.
 
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