Team Ari

Arianna was born May 6th 2018, she was born with Trisomy 13. We brought her  up to Akron Children’s Hospital to have cleft lip and nose repair surgery. On the way to the hospital doctors called, and said we are postponing surgery so they could look to make sure that Arianna wasn’t having any infantile spasms, so they wanted us to stay overnight for a 24 hour EEG. That 24 hour turned into 48 hours, to then find out she was indeed having infantile spasms, and started her on medication. Getting ready to go home they decided to draw her blood one last time, where they found out she had low blood sugar’s. They started pricking her feet and her fingers for about a week to find out she was having thyroid issues so they started her on a medication to help with her blood sugars. She spiked a fever one night, so they did a chest x-ray to find out that Arianna had aspirated and there was pneumonia in her lungs she ended up getting an NG tube and was put on oxygen and IV anabiotic’s. After 10 days of being on anabiotic‘s Arianna was finally acting like her normal self and we thought things were looking up, then her father and I were watching her one night, and it looked like she was having a spasm or a seizure, so we called the nurse. The nurse came in there and watched it, and had someone call the doctor, then the doctor came up and they watched my daughter have a seizure for 45 minutes before administering IV Ativan. After they administered the Ativan not even three minutes later my baby girl code right in front of my eyes, they ended up taking her down to the PICU where she then coded again and her father’s arms. After that they intibated her and she was on a vent for about a week. They took her off the vent and they put her on BiPAP, and she was doing OK for a while, then she randomly destated and they ended up intibating her again. The doctors told us that there was nothing left they could do for our baby girl. It was either to give her a trach and she’ll be ventilated at home, or to let her go peacefully. Her father and I told them we would like a second opinion from Cincinnati Children’s Hospital, they are the second best children’s hospital in the world and third and pulmonary. We just got approved by insurance, because they have to fly her to Cincinnati. Now we’re just waiting for a bed to open up in their PICU.  We are doing this fundraiser for people who can’t attend our Dine to Donate  at Quaker steak and lube in Austintown on December 4. I’m thanking everybody who does donate, you guys are awesome, we love you, and thank you so much for all your kind words and prayers! you guys are amazing, please keep Praying for my sweet baby girl. Ari is such a tough little baby, and she’s fighting so hard to tell everybody that she can do this! we feel like the doctors up here just giving up on her because she has trisomy 13.