We found out around 13 weeks that they suspected something was wrong with our baby. I don’t remember the time frame but we did go ahead with the amnio. Waiting for the results about killed me. We got a call and were told she did not have a chromosomal problem. Our daughter was ok. I remember falling down to my knees. The relief was overwhelming.
5 days later we got another call. They were wrong. They were sorry but the additional test from the amnio came back positive. Of course we were told many times we could interrupt the pregnancy. That was never an option, never even a consideration for us. If our angel was going to die it would be in God’s time. I was told she wouldn’t make it to term, most likely be still born. We had monthly ultrasounds complete with videos. It would give us memories of her life if that was all we got.
I had had previous c-sections, so one was scheduled for Charley….because she did survive! 3 days before the scheduled delivery date my water broke. Amazing because I hadn’t had this happen with the others. Charley was born and showed everyone what a fighter she was. She came home with me, on time, with no medical intervention.
We were told she had a heart defect. One that is commonly seen in babies with Down Syndrome. We were told it was an easy fix, but that they wouldn’t do it for Charley. And they told us that would be what she died from. That would take her first. We were told to not even think of going anywhere else because they all felt this way. (The pain from believing them will forever haunt me)
About 2 weeks before she died she was hospitalized. We found out then that there was another hospital that would have helped her with her heart. They had a palliative fix they could do. (the full fix would have been too hard on her) The one they would’ve done would have been easier on her, made her more comfortable and gave her more time. But they needed her stable and she wasn’t stable anymore.
Charley lived for 3 months and 3 days. She had went in for weekly weigh ins, and made it up to 6 lbs. She had her hearing checked. It was perfect. She had genetic testing. She was 97% Trisomy 18. I have always believed in God. But Charley was my actual proof of him. I prayed constantly for her. We had prayers around the world being said for her.
All the doctors were sure she wouldn’t make it. I believe God postponed his plans for her so we could show her love. We got to know her, love her, hold her, feed her, bathe her, smell her, touch her, talk to her, push her in a stroller, hear her. That was over 4 years ago now, and I can honestly say this pain does not get better with time. A little over a year ago our daughter Danielle was working at her job at a Sanders candy store. An old man came in. (Danielle said he was so old she was surprised he came in alone) He placed his order and went and sat down to eat. She was the only one in the shop and they don’t wear name tags. He got up to leave and walked to the door. At the door he stopped. He did not turn around. He said “Charley really enjoyed her time here”, then he left. HOW????? OMGOSH!!!! This was my PROOF of heaven. :o)