Our Clefie PRS warrior is up for her next fight

Hey y’all,

Emily is back in the NICU again except this time we are Downtown. We went to her appointment yesterday for the cleft team. Emily has Pierre Robin Sequence which consists of a small chin, palate and tongue that sits further back. The surgeon told us she needed to be admitted to NICU because her airway is severely obstructed. They told us we are lucky. Emily will be having surgery within the next few days. The mandibular distraction will extend her jaw forward with hardware in place.

This is completely unexpected as we just did a 41 day stay in the NICU with her after I delivered. She is still destating on oxygen and has color changes (blue spells is what we nicknamed them). We are being told we will be here through Christmas. I did a great attempt and pushed for transfer on 11/07. We were told “she would grow out of this”. We placed our trust in them as we didn’t have experience with her conditions before. We are being told here that’s not the case. As a Mama, I wish I could take her pain and discomfort away.

The gofundme is to help set off medical bills, lodging, food, gas and parking. If you are unable to donate, we appreciate if you could keep her in your prayers or thoughts. We love her very much. I know we will get through this. Emily is our sassy warrior. I’ll keep y’all updated.

Thank y’all very much,

Jennifer