Please Help The Milton's Get Their Baby Girl Home

On October 22nd, 2021 Susan and Nikko Milton welcomed their firstborn beautiful baby girl Ava Grace “Gracie” into the world 11 weeks earlier than expected via an emergency c-section. Although some time spent in the NICU was expected, after weeks of testing and monitoring, at 9 weeks old Gracie was diagnosed with Beckwith Wiedemann Syndrome (BWS) which is an overgrowth disorder that affects different parts of the body. In Gracie's case, this disorder is affecting her tongue and is known as macroglossia. Due to her enlarged tongue, she struggled very much to breathe on her own, to breastfeed, and to swallow. After many more weeks of testing, monitoring, and visits from doctors and nurses, after 83 days in the NICU at the Yale-New Haven Hospital, Gracie was transferred to the Children’s Hospital of Philadelphia (CHOP) where they specialize in BWS and can better assist and address Gracie’s enlarged tongue and the complications it was causing. On January 19th, 2022 at 87 days old, Gracie had a tongue reduction surgery with hopes that it would solve her breathing, sucking, and swallowing issues. As Gracie continued to heal from her surgery, Susan and Nikko gained hope that they would soon bring their beautiful baby girl home to finally meet their family, friends, and Gracie’s fur brother Duke.

Gracie is now past 4 weeks post tongue reduction surgery and although the surgery was successful, Gracie is still in need of respiratory support. A bronchoscopy was done to see exactly where the obstruction was occurring and showed that there is not enough space behind Gracie’s tongue which is causing her continued breathing difficulties. Because of this obstruction, Gracie now needs a tracheostomy and a gastric feeding tube which drastically changes what life at home and everyday life will look like for this family. These interventions, as of now, are expected to be required for at least 2 years with the hopes that as Gracie grows, she will grow out of her obstructions and will be able to have the supports removed. This also means that Gracie will need daily at-home nursing services as well as other interventions, medical equipment, training for Susan and Nikko, and will require them to travel to Philadelphia frequently. They’ve spent over 100 days now in the NICU and Susan and Nikko haven’t left Gracie’s side. They haven’t been home or able to work in months and are now hoping to head home near the beginning of Summer. As first-time parents, this was nowhere near the experience that Susan and Nikko expected and it has been exhausting and trying.

On behalf of their family and friends, I am asking for donations to help this young family on their journey home and to start their lives together. All donations would help the Milton family with medical expenses, expenses related to Gracie’s care, and helping the family once they return home. Please keep Gracie, Susan, and Nikko in your thoughts and prayers and consider donating to help them during this very difficult journey.