Nevaeh Rae’s Heart journey

Hello, my name is Amanda Regnell. My beautiful family and I have gained another blessing on February 14th 2024, Nevaeh Rae Regnell. For those who don’t know us, My sweet Nevaeh was born with a congenital heart defect Called Hypo-plastic Left Heart Syndrome. In the simplest of terms, this defect means that the left ventricles, valves and chambers are incredibly small. The left side of your heart is responsible for pumping the good healthy oxygenated blood throughout your entire body. Luckily for us, this was all caught at our 20week ultrasound and monitored throughout life in the womb. We were informed that miss Nevaeh would have a series of 3 open heart surgeries before her 4th birthday! As you can imagine we were devastated. Thinking the worst and realizing the very real risks that could come. What would her life look like? Would she survive her first big surgery? Where would our family go? What would we do?

Fast forward to February 14th: Nevaeh was born 8lbs 18 1/2 inches, via c section at 9:48am, In Philadelphia pa at CHOP. Since birth Nevaeh has made great strides as our little heart warrior. Before surgery she eliminated many scares and risks we were prepared for. She was eating well with moms milk through bottle and we even got to breast feed a few times as well! It was beautiful to see all her progress. And we got lots of snuggles in.

5 short days later on February 19th she had her first surgery. Went back to the OR at 730am, was prepped and the first incision was made at 900am. They called with hourly updates letting us know how she was doing and where she was in the process. By 2pm she was out of surgery and just doing some finishing touches to get settled in her room on the cardiac unit. The surgeon told me “she is one of the quickest I’ve ever done and now she’s just showing off” she did incredible!!!

A lot of things have happened since then. She’s come off a bunch of meds, had dressings removed, been taken off a breathing tube, started on tube feeds, chest tubes removed etc etc. she has a long way to go but the docs and nurses have reassured us all that she’s doing terrific and is an above average patient. She’s strong, she’s brave and she’s proving to all of us that miracles can happen with trust in the Lord and a good team of people to back you up.

We have truly appreciated all the prayers and well wishes coming from people we know personally or only know because of family and friends. Thank you so much for reaching out. I've been asked by many what we need. At this time, we have been told that Nevaeh could potentially be in the hospital for another 6 weeks(I have been out of work since the 27th of January). That means another 6 weeks or more of me being unable to contribute to the household. So as much as I absolutely hate to say it, financial assistance is honestly what we could use right now. If you are unable, we understand and continue to appreciate your prayers and love. It means the world to us. Thank you and God bless!

Ways to give:

GoFund me

Venmo: @Amanda-Regnell last four of phone number 5494

Check by mail:

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