Support Remi Rae Through Her NICU Journey!

•To anyone who has been asking or willing to help our new little family: 

Remi Rae Rogers was born 07/10/24 at Woman’s Hospital and has been in the NICU ever since. As of now the doctors are estimating she will be here for a few months based on her conditions. 

On the day Remi was born the doctors noticed they were completely unable to get her jaw open and her right nostril was closed off. Immediately she was brought to surgery to get a tracheostomy. (A tube in the neck to secure an open airway) Remi is currently relying on a vent to get oxygen to her lungs and keep her stable. 

A few days after Remi was born she had to have a feeding tube put in through her left nostril because of her jaw issues not allowing her to get feedings through the mouth. Before coming home she will be undergoing a surgery to have a gastrostomy tube put in. (A small tube on her belly going directly to the stomach)

After further examination the doctors have noticed a few other issues she is having as well. Such as a cleft palate in the roof of her mouth, club foot, and possibly some neurological issues.

So far genetic testing has been done and came back normal. She is scheduled to have a number of other test done such as, a MRI and visits from multiple different specialist to try to determine exactly what is going on.

Remi’s medical team has been closely monitoring her conditions and although progress is being made, the road ahead remains uncertain.

•Updated Story: As of 8/23/24

So far all test have come back normal but the doctors have clinically diagnosed Remi with Moebius Syndrome. Moebius syndrome is a rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius syndrome are born with complete facial paralysis and cannot close their eyes or form facial expressions. As far as the trach goes she is still on the vent with low settings but she still needs the extra support to help her breathe due to her jaw being locked. Over the past week Remi has been super sick and we couldn’t figure out why. That was until a rash showed up on the side of her face and the doctor took a culture of it. When the culture came back she tested positive for MRSA Staph on her face and inside of her trach. The doctors are currently giving her an antibiotic to help fight it off but we are waiting on the blood culture to come back to see if it’s in her blood stream. 

Updated Story: As of 10/19/24

At this moment Remi has been doing great overall with the trach, vent, and g-tube. She just made it to 11 pounds and the doctors have ordered her home vent. With that being said we are getting into the talks of discharge very soon here. After 3 long months of uncertainty, excessive training, and sleepless nights we never thought this conversation would come about. There is still no set date yet but we are so excited to know it’s coming in the near future. The doctors are waiting for the vent to come in and make sure Remi will tolerate it well. Most importantly they want to make sure we are comfortable taking care of her and fully prepared. We will continue to give updates as we get them!

Updated Story: As of 11/26/24

Since our last update Remi has reached 14 pounds. She was put on the home vent, 10/31/24, for about 3 weeks weeks before she developed hypertension. Hypertension is essentially high blood pressure, it’s continued to get worse so the doctors decided to put her back on the hospital vent. They said she might not have been ready for the big change just yet. Remi has been doing a lot better since being transferred back to the hospital vent. The nurses noticed she was starting to get sick again, with test results coming back for staph in her trach. Plans of coming home have since been delayed with an unexpected discharge date. Other then all the changes Remi has been developing very well becoming much more active and alert. We love watching her grow everyday and pray she can come home by Christmas! Thank you to everyone who has followed along the way. (Updated pictures below)

•We are reaching out to anyone who is willing to help out with funds throughout these tough times. With us being a single income family anything helps. The donations will go towards time missed at work due to learning how to care for Remi, as well as additional expenses traveling to and from the hospital and daily needs.

Your donation and prayers will be greatly appreciated. Thank you and God bless.

For Direct Donations:

Cashapp- $PresidentialLyfe

Venmo- @WrldFamousLucas

#TeamRemi

Updated Picutes: As of 8/23/24

Updated Pictures: As of 10/19/24

Updated Pictures: As of 11/26/24