MIllies HEART Journey

11/01/2025

Still not to baseline, but with the power of prayer Millie is acting way more like Millie 🥺. Baby girl is still not feeling good at all and has a lot of healing to do, but today she was able to walk 20 feet with a little bit of help due to a few cords on her and because she’s still in a lot of pain and she even got to try a popsicle!Hopefully soon we can get this wound vac off of her so she has more room to walk when she’s feeling stronger ♥️

11/01/2025

Small update on Millie today. Mom made a trip down just for the day to take older brother trick or treating, but we still have good news! Millie is still having neurological issues we don’t know the cause of entirely, but she was able to go up to the 4 Sutherland floor and out of CICU. For the first time ever last night as well we seen Millie smile. She hasn’t done it since that one time but it’s a step in the right direction. Thank you all for your continued prayers for Millie as always they’ve definitely been working! Sorry for the delayed updates it’s been hectic at the hospital and on today’s holiday. I’ll have more update’s on Tuesday mainly since she will receive her MRI on that day instead of this coming Monday! Happy Halloween & we love you all ♥️ 👻

Side note: Millie hated her costume and we were unable to get any pics of her in it today given her current condition. So sorry in advance for no Millie Halloween outfit pics 😅

10/30/2025

Miss Millie had a very rough night last night. She has been crying and throwing up consistently,and has been in a lot of pain. She received her EEG last night and the neuro team said it looked normal. Originally Millie was supposed to get her heart catheter done on monday along with her MRI, but due to the pseudomonas the team decided to wait so they don’t risk getting the bacteria in her heart, though she will still get her MRI done that day. Millie’s biopsy came back as well with a bacteria called Panniculitis. This bacteria formed because of the pseudomonas and is what’s in the nodules Millie has covering her body. The team also believes Millie has ICU delirium and will start her on a medication tonight to try to help with that. We know for sure right now neurologically something’s wrong. Whether or not it’s physical or mental we have no idea but the team does think another possibility for Millie’s odd behavior and inability to speak is from encephalitis. The last update I have right now is Millie’s heart function was at 63% and she does have fluid surrounding her heart. Millie can use all prayers right now possible. Thank you all for the continued support for Millie 🥺❤️‍🩹

10/29/2025

This morning Millie was taken down to OR to get a biopsy done on her nodules and due to neurological concerns she will be getting a spinal tap done as well. Prayers for some answers on both please ♥️

10/28/2025

Today Millie will be getting a biopsy done and she’s scheduled to get an MRI done on Monday. From a heart perspective Millie’s looking great, neurologically however there’s concerns. Millie will have her biopsy done for the nodules that have been forming all over her body. The MRI they have scheduled is to try and figure out why Millie isn’t neurologically even close to baseline yet 😣. Thank you all for prayers as always, we will give more updates when we can.❤️‍🩹

10/27/2025

Small afternoon update on Millie:
Today the team looked more into Millie’s nodules that has formed under her skin,and noticed they haven’t been getting better at all but worse. Millie will need to have a biopsy done to try to figure out what they are. They no longer think it’s related to the pseudomonas. Please pray for them to figure out what’s causing these mystery nodules and why they have been growing & spreading so rapidly. On a more positive note, Millie was able to be held for the first time since sending her back for her transplant and was finally able to get some decent sleep.🥹

10/27/2025

✨Millie update✨:
Though Millie’s having a pretty hard time fighting the pseudomonas her echo today came back great! Her heart function was 65% which is higher than they expected. When Millie got put on her Berlin heart her heart function was at 12%! The team is very very happy with how her heart looks right now. Currently, we just need to get her chest to stop bleeding and get this blood infection fought! She is on one heart function medication that by tomorrow should hopefully be completely done! Millie has been on this medicine specifically since she was 6 months old and it’s called milrinone. When she’s off milrinone Millie will be done with all her Iv medicine (besides her antibiotic for the pseudomonas)! They said hopefully about two more days or so in the CICU and then we might be able to go back to the main floor Millie’s been on for the past year! Today we’ve had mainly complete good news, thank you everyone always for your prayers! ☺️♥️

10/27/2025

Late night Millie update for everyone:
Today Millie was really struggling to get any sleep. This baby is a complete belly sleeper and she can’t sleep on her belly just yet due to the transplant and pain she is in. She also had to have her dressings changed twice today because she keeps on bleeding where her VAD used to be. Due to the bleeding tomorrow the surgeon with stitch Millie where there’s an opening so she doesn’t bleed as much. She’s been in a lot of pain and still no smiles at all yet. The doctors said they are looking into a topical cream for Millie’s sores from the pseudomonas to help them heal and she is getting new antibiotics for the bacteria as well. Hopefully by tomorrow we will have results from a new echo and more updates since the heart failure team will be back on Monday! Thank you all for your prayers as always and thank you to those who have been donating to Millie’s go fund me and to kicks bar and grill! You guys have been such a huge support for us and we appreciate you more then you know 🥰

10/27/2025

Huge thank you to Kicks bar and grill!! They have helped so much on this journey & has never stopped ♥️

Misty and I just got a message about all of the awesome people that came out for the annual Rusty Knight memorial jam. Bobby DeGonia and the boys brought the crowd and celebrated one of our best friends. We are disappointed that we couldn’t be there in person but we were watching and listening via cameras. Thank you to all the musicians that came out along with our amazing customers.

Also, there were donations made to Millie. We had a benefit for her back in January with an amazing turnout. We would like to thank everyone that donated to little Millie, you are awesome!!!

Thank you

Bryan and Misty.

10/26/2025

Little Millie update:
Today Millie’s platelets were pretty low and her blood pressure was pretty high. She also has been very restless so they gave her some medicine to help her get some sleep. Millie was able to just now get her oxygen taken off so she’s fully breathing on her own. The team is trying to figure out if they need a cream for Millie’s blisters from the pseudomonas as well. There still hasn’t been another echo done on her heart so heart function wise we have no idea of just yet, but we should know by tomorrow. Right now Millie’s very uncomfortable but watching miss rachel trying to take a nap! Thank you all for continued prayers for baby Millie, we will give more updates as we get them 🤍