BaeLeighRayne

Update on Baby BaeLeigh

Today the doctors did an ENT scope and found that BaeLeigh has an obstruction in her upper airway that is causing her to struggle to breathe at times. The next step is a sleep study to determine whether she also has sleep apnea.

If she does have sleep apnea, she will likely need a trach so she can always get the air she needs. If she doesn’t have sleep apnea, there’s a possibility of doing another surgery to remove the excess tissue that’s blocking her airway.

This has been a lot to process. It breaks our hearts to even think about her possibly needing a tube in her throat, especially since she already pulls at the tubes and wires on her face. But more than anything, we want her safe and able to breathe, and we will do whatever is necessary to make sure she gets the air her little body needs.

Please keep our family and sweet BaeLeigh in your prayers as we continue this journey. Your love, support, and prayers mean more than you know.

✨ BaeLeigh Update ✨

With preemies, the standard goal is usually for them to be home by their due date. For BaeLeigh, that date—November 18, 2025—has come and gone, and she is still fighting hard in the NICU.

Right now, BaeLeigh is on 3 liters of oxygen, but she needs to be down to 2 liters before she can go home. Because of her syndrome and airway structure, she doesn’t have the same oxygen reserve most babies do, which makes every decrease a challenge.

She had been making steady progress, but then suddenly developed NEC (necrotizing enterocolitis)—an inflammation of the intestines that also reduces oxygen levels to the gut. This setback meant we had to stop all feedings and oral medications. She is now back on IV nutrients and one IV heart medication to help keep her arrhythmia controlled while her intestines heal.

Once she is stable enough, the team will begin slowly reintroducing feedings at a controlled rate. The hope is to get her back off the IV and onto her feedings again. If she can safely reach 2 liters of oxygen, we may be able to try feeding by mouth. The next big hurdle will be monitoring her acid reflux and making sure she doesn’t aspirate into her lungs again.

This entire journey has been overwhelming and exhausting for Courtney and Joey. They continue traveling back and forth to Fort Worth, and they spent Thanksgiving at the hospital—grateful for the family who were able to visit. We are all praying they can bring their baby girl home before Christmas, but right now, it’s uncertain.

If you’re able, please share or donate to help support them through these incredibly difficult days and the upcoming holidays. Every bit of love, prayer, and help truly makes a difference.

Thank you all for lifting this family up. 💜

From Courtney:

So they think she might be in the hospital more than a few weeks. She currently is on multiple meds for reflux which they though was causing the oxygen levels to be lower along with the heart rates however the new doctor thinks it's because it might be due to sleep apnea so they are consulting the pulmonologist to see if they can conduct a sleep study. Please continue to pray for Bae and her family as they are still having to travel and don't know exactly the trouble that she is facing. 

BaeLeigh will still be in the hospital for a little while more two weeks or so more most likely. At this time she is one two heart medications and the inhibitor medicine for her arrhythmia. The doctors think it's helping so much but they might still have to increase the inhibitor. She was able to be moved from a CPap to a high flow oxygen mask. She is on a lot of support for that machine though. Currently on 10 liters the goal is to wean her down one number each day until she is able to breath without any support. Until she can do that they want to keep her in the feeding tube that is placed in the top of her small intestine because the discovered she suffers from GERD meaning the reflux from her stomach was getting into her lungs and had caused a lung infection which they were able to treat with antibiotics and steroids. She will have to be on a permanent stomach medication for the acid reflux and may never be able to feed normally. They may try to let her but most likely will be placed on a permanent feeding tube that will be able to connect on her stomach and unconnected when done making this easy for at home health. Please continue to pray for Bae and her parents as they still make weekly trips to and from Tyler and Fort Worth. We thank everyone who has been able to donate without you guys Joey and Courtney would have struggled so much more due to expenses and only one parent being able to work. BaeLeigh has applied for SSI and the process will be along wait but hopefully when granted will help with at home nurses and expenses BaeLeigh will need throughout life. This is a day by day syndrome and she will always need the 6 specialist throughout her life followed with checkups every 3 to 4 months. Again we thank you for your support.