Update 6/8

New plan is to start a medication that very few people need in the United States. It will come from a specialty pharmacy and come with a team, weekly testing, and risks. But we're still hopeful it works. Then we're homebound. Ella is TOUGH! And showing no signs of giving up any time soon. Shes had a great weekend, full of new coo's and smiles! She really wants to roll over and sit up! So soon she'll be more free to explore!

Update- 6/5

Date to go home is now unknown. One step forward, two steps back. Thank you all for the support.

*Update 5/21/25

We won't be here as long as we thought! Things are getting better and smoother!

I appreciate all of the support and love we have gotten from all of you!

Please keep Ella in your thoughts! We'll be heading home eventually!!

Hello everyone!

I'm Stephanie, Ella's mom. Ella is a single ventricle miracle! She was born in November 2024 with only half a heart (hypoplastic left heart syndrome) ❤️. I was only 33 weeks pregnant and terrified. 3 lbs 9 oz of pure beauty. She needed time to grow before they could do any surgeries to help. Ella has had 4 open-heart surgeries, an infection washout, a G-tube placed, and now 2 cath lab trips. She spent the first 128 days of life in the hospital. Then she got what's called the Glenn procedure done. That complicated things. She coded the day after Mother's Day. She was just in my lap seconds before. They got her back, intubated her, and put her on drugs to sleep for a while. That's where we are now. Waiting for a big meeting Tuesday (May 20) to see what our options and next steps will be.

I'm starting this GoFundMe for multiple reasons. I can't get back to work until I go home. Dad has been laid off due to needing to be here with us. So income isn't there. Rent, bills, and life don't pause no matter how hard you wish for them to. I know we've asked before and can be a pain, but know I will make it up to all of you, one way or another. Please feel free to share far and wide. I'm probably going to be here away from home for another 3-6 months...