MIllies HEART Journey

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! 🥳

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 🥰

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!

11/24/2025

EDIT: due to high tachro levels we will not be discharged until Wednesday morning!

Millie says “Good morning! ☀️” it’s baby girls last day/night in the hospital until discharge to Ronald mccdonald house tomorrow! 🥰

11/21/2025

Millie’s ready to be released 🤣♥️ sweet girl was bed bound while on her feed and ready to get out! She’s feeling good and doing great for having having a GI bug! She also is in the happiest mood today ! 🥰

11/20/2025

Baby girl is on the go! She did test positive for c-diff which is a GI bug, but she’s doing well for having it! She’s been in a great mood and hopefully if everything goes well we can be released to Ronald mccdonalds house on Tuesday of next week instead of Monday! 🥰

11/19/2025

Baby girl has a GI bug and it will be affecting when education training can be done and changing her date of being released. Please keep her in your prayers so she feels better soon, and so we can get discharged as soon as possible in the healthiest way possible ❤️‍🩹

11/16/2025

Just a little transformation video of our little fighter! Only 1 week until we are released to the Ronald mccdonald house and then our 3 month journey there starts 🥹♥️

Check out Stephanie Michele🦋’s video.

11/13/2025

So sorry for the delayed updates,but we have some amazing news! Millie is doing very very well and will be discharged on November 24th! We are still not allowed to take her home, but she will be out of the hospital and with us in the Ronald mccdonald house for the next three months! Millie will be discharged on antibiotics that are still treating her pseudomonas, so she will unfortunately have a piccline. The piccline should only have to be on her for 6-8 weeks though and after that she will only have her NG tube! Miss Millie also had her MRI and biopsy done the beginning of this week and both came back looking great! Millies biopsy showed that as of right now she has 0% rejection! 🥳 There will be a lot of big changes for our family and we couldn’t be more thankful for all the love and support from everyone here,and not to mention all the prayers!! Oh, and Millie’s been trying to run out of the room every chance she gets! This baby has been limited to so many cords for so long that she finally gets to walk with some freedom! Life is looking up for baby Millie right now and we couldn’t be more happy! 🥰

11/07/2025

Small update on Millie! She will be getting her heart catheter,piccline realignment, and her MRI done this Monday! Currently mom and brother both have strep throat, as well as brother has a double ear infection so we are all quarantined till hopefully Monday! The hospital is trying to get it approved for big brother to be up at the hospital atleast for a couple days a week too so we can all be up there together, so please pray that gets approved! On another note Millie has been slowly acting more like herself, starting to play and interact a bit more than she was before! Thank you to all for your continuous support and prayers always 🥰

11/05/2025

We have an update on Millie, but it’s not necessarily the news we were wanting to hear. Heart failure team and neurology said on Millie’s MRI they spotted the pseudomonas covering her brain, they also have no idea how long the infections been on the brain or what it can potentially look like for Millie long term. Her heart is thriving and doing great,all lab work looks great,but Millie herself was fairly lethargic today,hasn’t wanted to stand up,get out of bed, or really do anything for that matter. At this point we are just hoping and praying she can recover from this and get back to feeling like herself. Due to Millie’s immunity compromised, it’s a lot harder for her to fight off infections, especially one covering her brain. The team will let me know later whether or not they decide to change her antibiotics or not for the pseudomonas to try to help get it more under control. We will update as soon as we can. Thank you all for continued prayers. ♥️