Everything for Eleanor

I have decided to raise money for Tasha and Stewart at this time for Baby Eleanor while she is in the Nicu at USA women’s and childrens. Tasha’s income is a major source for their household and she will now be bedside with Eleanor for the foreseeable future learning how to care for her under this condition. Please help me help them during this difficult time with anything they need. Anything donated will go straight to them. And most of all please continue praying for them!

FROM TASHA:

So I’ve been debating on posting this but I really need some help and would like yours prayers. And I know it’s long, so if you take the time to read I thank you. While some know and others might not but after I had Everly in Feb 2023 I got my tubes tied. About 5 months after getting my tubes tied, my tubal failed. We were in total shock. I was mad, sad, terrified. Most people know that my pregnancy with Everly was very rough. I was very very sick for 9 months with multiple hospitalizations and then my labour was extremely traumatic for me. In my head I could not even wrap my head around how I could do it all again with a 5 month old. We decided that obviously this new bundle of joy was meant to be. As weeks went along we found out we were having another precious baby girl. The pregancy itself was so much easier. I felt better. We became excited and everything was going well until about 26 weeks. I had a routine anatomy scan that showed our baby femurs were curved and they were showing around 10 weeks behind. We were immediately referred to high risk clinic and there we confirmed that she had bowing of the lower extremities. They told me her hands and feet were abnormal. Her brain was enlarged. And wanted to run some tests. About 4 weeks later they came back saying that they believe she has a rare disease called osteogenesis imperfecta. About 1 in 15,000 babies have this. They call it brittle bone disease. Osteogenesis imperfecta is caused by defective genes. These genes affect how the body makes collagen, a protein that helps strengthen bones.

The condition can be mild, with only a few fractures during a person's lifetime. In more severe cases, it can involve hundreds of fractures that occur without any apparent cause. It’s more of a clinical disease meaning we really couldn’t say how bad it is until she got here. They continued to watch her grow. They watched for broken bones in the womb. They prepared us for the chance of her passing at birth. And also said they were cautiously optimistic that she possibly could have a milder version and not such a lethal one. But we wouldn’t know until she was here.

For about 2 months I prayed harder than I ever prayed. Probably cried harder than I ever cried, and was more scared than I ever have been in my life.

April 17, 2024 at 10:03 am

We brought Eleanor Faith Butler into this world. She was 7 pounds and 13 ounces!

She is so precious with the cutest chubby cheeks.

Eleanor was born with a broken arm in two places. They said a few of her ribs broke while she was in my stomach but the did heal. And they believe her legs broke also and healed but healed in a c shape which caused the bowing.

BUT let me tell you what odds eleanor has already beat in just 2 DAYS. Eleanor is already proving she is a fighter! She is breathing completely on her own. Her lungs and chest developed just like they needed to! Her heart looks beautiful. Her brain is in fact not enlarged and perfect. Her hands and feet are normal!!! She is in the 43 percentile for growth while they told me she was 10 weeks behind and measuring extremely small. She is already an absolute miracle.

I know what community can do, and all I’m asking is please whisper a prayer for my baby girl. Please pray that she continues to get stronger everyday. Pray for her not to be in such pain. That her bones react to the infusions and the medicine helps strengthen them. That we can find the best pediatric orthopedics to help us. And please pray for our family as we endure this challenging journey.