My daughter BaeLeigh was born at just 32 weeks, arriving far earlier than we expected, and was diagnosed with a rare genetic condition called Costello syndrome.(Costello syndrome is a rare genetic condition that causes cells to divide and replicate faster than expected. This causes both cancerous and noncancerous tumors to form. Costello syndrome also affects the brain, bones, heart, muscles and skin. Treatment addresses symptoms of the condition and there's no cure.) Her original due date was November 18, 2025, but that day has come and gone while we remain in the NICU at Cook Children's in Fort Worth. We spent Thanksgiving by her side in the hospital, and as the holidays continue, we are still hoping for the day we can finally bring her home.

BaeLeigh had NEC and was on antibiotics and IV nutrition for awhile but she beat it. She had a upper airway obstruction and we were scared she was going to have to have a trach but she ended up having a supraglotoplasty though they are not sure if this has fixed the problem 100% or not yet we are hoping to go to a less oxygen flow and not have to still do a trach. Because of her syndrome Bae is just having so many tummy issues. Tons of acid reflux and problems with digestion and diarrhea. She still is on a feeding tube and we will eventually be working in feeding by mouth when we can get her oxygen flow to 4 liters which hopefully won't be too long. This has been a long and exhausting process but I am just thankful to have my daughter alive and fighting to be better so we can go home. Cook Childrens hospital is a great hospital and I am glad that she has had the best care.

The support we have received so far has been incredible, and we are so grateful for everyone who has helped us along the way. The holidays have now come and gone With still no clue on when we will get to go home. We are reaching out for extra help to cover travel, gas, and food expenses while we stay close to BaeLeigh in the NICU. Our vehicle broke down a few weeks ago so any funds given are helping us pay for the other car we just had to get. Thank you for your continued care and support—every bit of help means the world to us as we navigate this journey with our daughter. Please continue to pray. God has for sure been holding us through these trying times.