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!!! 🙏🏽❤️‍🩹

01/25/2026

Just an update on miss Millie since it’s been a minute! Millie is doing fairly well, today she’s just very very tired and a bit grouchy. :/ I also wanted to get on here and give a huge shoutout to Mitchell’s drugstore on the blvd! The man running the place personally delivered Millie’s medicine due to us being snowed in,and potentially saved her from horrible withdrawals! She could’ve had seizures,delirium,hypertension, ect. This man drove out in the weather to deliver her meds personally and we are very very grateful for him! We missed three doses due to children’s mercy accidentally not sending her any, so he really saved us! To whoever you were THANK YOU!!! On another note ,Millie has a couple of big appointments coming up due to missing her last biopsy from us being pretty sick. Millie also has not been tolerating her feeds or gaining weight. We will figure out what’s going on regarding her rejection during the next appointments, and more updates will be posted then! Thank you guys so much for the continuous support and prayers for Millie Lou 🥰

01/14/2026

Small Millie update: we are currently sick, Millie had a fever this morning which has gone away, but she’s still puking,has a runny nose, and is coughing. Due to this happening she will be missing a heart catheter and echo appointment we were supposed to have tomorrow! Though she will miss that appointment we will still be getting labs done tomorrow in our hometown! Despite being a bit under the weather Millie is as happy as always watching her favorite shows and playing with her older brother 🥰

With only 4 days left till we are supposed to officially be released, heart failure decided it was okay for us to be hom...
01/08/2026

With only 4 days left till we are supposed to officially be released, heart failure decided it was okay for us to be home completely! Millie still will have weekly appointments and blood draws, and she is still actively rejecting but all they can do for rejection as of right now is prescribe her steroids. With that being said Millie is allowed to “reject at home” and we no longer have to be in the Ronald mccdonalds house 😊

So far we have no big updates! Millie’s tacrolimus levels went back down so her new med adjustment has been working grea...
01/06/2026

So far we have no big updates! Millie’s tacrolimus levels went back down so her new med adjustment has been working great for her tacro levels. Besides that, Millie’s just enjoying her life and bugging her brother as much as possible 🥰

12/31/2025

Happy New year’s Eve from Millie Lou! 🥰

Small update on Millie: we are home for new years, though not favored by heart failure Millie shouldn’t have to miss out...
12/30/2025

Small update on Millie: we are home for new years, though not favored by heart failure Millie shouldn’t have to miss out on every single holiday just to sit in the Ronald mccdonalds house while her heart rejects, she deserves a life outside of the hospital and Ronald Mccdonalds house atleast every once in a while🤷🏼‍♀️ on Friday she has an appointment and we will be back in KC for a while like we are supposed to be. Her tacro levels were higher so they lowered her tacrolimus medication and they want to recheck it again on Friday! Hopefully by January 12 we can officially be home and done with Ronald mccdonalds house atleast for a while. Millie is as happy as ever at home playing with her brother 🥰

We broke out of the hospital! Millie’s body is still actively rejecting her new heart, but the team started her on a hig...
12/27/2025

We broke out of the hospital! Millie’s body is still actively rejecting her new heart, but the team started her on a high dose of steroids hoping that will help her. They said it really depends if they caught it early enough whether or not steroids will make a difference, but Millie gets to “reject” at home. We are still stuck at Ronald Mccdonalds house until the second week of January, and in two weeks Millie will have another heart catheter/biopsy to see if the rejection has improved or not, if it improves or stays the same she can go home,but if it gets worse they will admit her in the hospital again. Right now we just are hoping for the best possible outcome so Millie can live a life as normal as possible, happy and healthy as she can possibly be. Thank you all for continued prayers as always ☺️

12/24/2025

We got some bad news regarding Millie’s results from her biopsy/heart catheter. Her body is rejecting her heart in two different ways. She has what’s called ACR and AMR rejection. ACR rejection is acute cellular rejection, this means her T-cells are attacking her hearts cells. AMR rejection is antibody mediated rejection, this is when the antibodies attack and injure the blood vessels in the heart hindering blood flow. She is getting admitted immediately to start her on medication to try and help rejection. We are hoping they have caught this early enough, and that she can be back with us home. Please continue all prayers for Millie especially right now. ❤️‍🩹

Sweet girl had a rough night🥺. The hospital ended up sending her to ronald mccdonalds house instead of keeping her due t...
12/24/2025

Sweet girl had a rough night🥺. The hospital ended up sending her to ronald mccdonalds house instead of keeping her due to brother not being allowed to stay overnight with us and because most g-tube patients are good to go home after surgery. Millie Lou threw up every feed last night,and she’s been up since about 3am trying to sleep. She’s finally asleep now and has so far tolerated her morning feed! We are still waiting on her heart catheter results to see if we can go home for Christmas. Fingers crossed we get results soon 🤞🏼😩

Millie’s officially awake (in and out) and will stay overnight in the hospital! She will get discharged in the morning s...
12/23/2025

Millie’s officially awake (in and out) and will stay overnight in the hospital! She will get discharged in the morning so we can go home for the holidays instead of tonight like we had originally thought, she’s in a lot of pain but doing well!

Millie’s officially done! She’s headed up to recovery now and the doctor said if the feed from her G-tube goes well we a...
12/23/2025

Millie’s officially done! She’s headed up to recovery now and the doctor said if the feed from her G-tube goes well we are good to go home for the holidays! The heart catheter results we will not know until tomorrow morning and the results will show us whether or not Millie’s heart is being rejected by her body! I will give an update on those results whenever I receive them! Thank you all for your prayers ☺️

Heart Cath is done! Now time for the G-tube!
12/23/2025

Heart Cath is done! Now time for the G-tube!

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Neosho, MO
65850

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