MIllies HEART Journey

MIllies HEART Journey This is Baby Millie! She’s on the search for a new heart! Sweet Baby’s fighting for her LIFE! ❤️‍🩹 Lets share her Story and show her all our Love!!! 🙏🏽❤️‍🩹

Small update on Millie Lou:She has not been tolerating any of her feeds lately and still has not been sleeping at all! W...
12/17/2025

Small update on Millie Lou:
She has not been tolerating any of her feeds lately and still has not been sleeping at all! We are scheduled to meet with a surgeon on December 22nd to get Millie scheduled in to get a G-tube placed so we no longer have to mess with the NG! We are hoping that when her NG is out and her G-tube is placed she will be more interested in eating and tolerate her feeds better. Also, miss Millie got approved for a day at home! She did very well in the car and took good nap 😴 🚗

12/16/2025

Millie’s first time playing outside 🥰

Appointment day so far has been hectic, Millie Lou threw up her entire feed and the meds she was given. She also had no ...
12/15/2025

Appointment day so far has been hectic, Millie Lou threw up her entire feed and the meds she was given. She also had no NG tube due to it flying out while vomitting, but heart failure said all her labs came back great from a heart standpoint,and prescribed her medication to help her sleep due to her not sleeping since leaving the hospital from some night terrors. We are now back at the Ronald mccdonalds house with a new NG and she’s happy as ever 🥰

12/13/2025

Despite the occasional throwing up and lack of sleep from teething, Millie’s been doing pretty well and we finally get to have brother up with us since he’s no longer sick🥰

12/12/2025

Millie’s ready to start the day! 🤩 Sweet girls tacro levels where fairly low so her tacrolimus medication was upped a little bit, besides that she’s doing great! 😊

Incase anyone was wondering how Millie’s day ended, she’s out like a light😅
12/11/2025

Incase anyone was wondering how Millie’s day ended, she’s out like a light😅

So far so good! Millie’s loving being out of the hospital 🥰
12/10/2025

So far so good! Millie’s loving being out of the hospital 🥰

We finally got discharged! We get to stay at Ronald Mccdonalds house for a while and have lots of appointments, but we a...
12/08/2025

We finally got discharged! We get to stay at Ronald Mccdonalds house for a while and have lots of appointments, but we are officially out of the hospital! Counting down the days until we get to actually be back home for good! Thank you all for prayers always, also disregard Millie’s facial expression she was very confused given she hasn’t been in a car seat or car for a little over a year, and yes as you can tell mom also needs to adjust it 😅♥️

Update on Millie:She will not be released until next Monday due to her testing positive for rhino enterovirus,we also ar...
12/01/2025

Update on Millie:
She will not be released until next Monday due to her testing positive for rhino enterovirus,we also are not allowed to be around her due to illness we have had so she isn’t at risk for getting more sick. On the plus side, Millie has been tolerating her feeds a lot better and she will not have to go home on the piccline due to it being removed the 6th of December! That means less time stuck on cords for miss millie and no needles inside of her at all! 🥳

Happy thanksgiving!! 🦃🍁 This year we have more than ever to be thankful for! This was the year our sweet baby girl recei...
11/27/2025

Happy thanksgiving!! 🦃🍁 This year we have more than ever to be thankful for! This was the year our sweet baby girl received the blessing of a new heart. We will forever be extremely thankful for the family that by the grace of God decided to donate life to our girl. Though they don’t know us,and we don’t know them hopefully one day we can meet to let them know how thankful we are! Unfortunately this year thanksgiving isn’t exactly what we had hoped for due to illness mom and dad both have ,and due to Millie still not tolerating feeds. We are unable to spend thanksgiving with Millie and with our family back at home due to our sickness. Millie’s been in a great mood today according to the team and is having a great day so far. If things go as planned and Millie starts tolerating her feeds we will be able to get discharged to Ronald mccdonalds house Monday! That also depends on whether or not we are no longer sick too. We hope everyone has a great day today, thank you guys for endless support and love always, we are forever thankful for every one of you as well 🥰

Small update: Millie is in recovery now watching miss rachel and trying to nap! Her biopsy and heart catheter both went ...
11/25/2025

Small update: Millie is in recovery now watching miss rachel and trying to nap! Her biopsy and heart catheter both went well, but due to Millie’s continuous vomiting/inability to tolerate her feeds yesterday, the team is not comfortable sending Millie home until Monday (that is if all things go well).

11/25/2025

Miss Millie had a rough day yesterday, but was in an amazing mood all day! She didn’t tolerate any of her feeds and was throwing up like crazy,she also face planted and busted her lip open. Besides that, she was in an amazing mood all day and night. This morning they took millie down to OR to sedate her and perform a biopsy & heart catheter. As long as everything looks good, and her tachro levels are down again we will be getting released tomorrow afternoon!

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Neosho, MO
65850

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+15802775136

Website

https://cash.app/$Bpotter88, https://venmo.com/u/Becky-Potter-20

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