Hope and Healing for Baby Allie

Hello. Our names are Nick and Grace. This is our story. I am a union worker, and she works in medical records for a nursing home. We found out back in July and that we will be expecting our first baby together. We were beyond excited. The more appointments we had, the more we found out. At 20 weeks, we found out she had clubbed feet. Then at 24 weeks, we found out our sweet baby girl had clenched hands. Grace was having a lot of pregnancy complications, so I made the decision to take an on-purpose layoff from work in the middle of December to make sure I could be there for anything she needed.

Fast forward to a couple of weeks ago, we got transferred from Saint Luke's to Children’s Mercy where we found out Allie did not have any movement from her knees down. Her due date wasn’t until March 26th, but sweet Miss Allie decided she couldn’t wait that long and arrived on March 3rd. As soon as she was born, she was taken into a room, put on oxygen, and taken into the NICU. The following day, we were told she was having a bunch of seizures. They had an EEG on her for 2 days and found out that she was indeed having seizures. After the EEG was taken off, they were able to take her for a brain MRI, and that’s where we unfortunately found out that she has inflammation and lack of volume in her brain. It won’t be life-threatening but will be life-shortening. Neurology said they are very concerned. Genetic testing was done but we will not know the results until early April.

We are going up to the hospital every day and spending as much time as we can with our baby girl all while raising my 3 year old daughter and still being the best dad and stepmom we can be to her. We are being very hopeful and know that God has a way of working miracles.

Little update. We got some pretty devastating news yesterday. Long story short, they won’t have genetics back till April but whatever is going on is causing her to lose brain cells and causing more seizures. They said she will have weeks to months to live we are working on trying to bring her home and have a 24 hour in care nurse rotation so we can enjoy the little time we do have at home and more family members can meet her. Will know more about that shortly. 

Little update. Baby girl is struggling with her breathing. They had to change her cpap apparatus to give her more support. She is a fighter, but she is tired. Please continue to pray for Grace and I. We are hurting so bad. We all are. We love her so very much! Once again, if you’re able to donate and help us get through this horrible tough time, we’d greatly appreciate it. If not, prayers are always welcome.❤️❤️