Amber’s Story.

It was December 7th 2017 my daughter started to struggle to breathe to the point she would completely stop. My husband and I weren’t sure what to do. Especially since we had no one we could call for help. We decided the best option was for me to take Ami to the hospital. My husband stayed at home with the other four children. That car ride over was the scariest time for me yet. Winter season takes the lives of many babies with Down Syndrome especially the ones who were smaller and didn’t have heart repairs yet. I cried and prayed to God the whole ride over for him to please not take my daughter away. I kept stopping to check is she was still breathing. I kept thinking I just have to make it to the hospital, I just need to make it to the hospital. Finally, making it to the hospital’s parking lot Ami’s colour was terrible. I knew they could see it in my eyes as I enter the door of the hospital carrying my limp daughter. The only words I could say was, “She has a heart defect.”

They quickly put I and Ami in a room. Once again her clothes were cut off and Ami was hooked back up to all the machines. They started ruling things out but she was definitely in heart failure. I just sat there helpless and alone again. Finally the next day test results show she had Respiratory Syncytial Virus. RSV also takes the lives of many typical babies. I so was worried beyond belief. It was again so hard because I was alone without my husband but he was taking care of the other kids. He still had to work because the medical bills were stacking up. I caught it earlier and the doctors told me it would get worse before it got better and they weren’t kidding.

Since being in the hospital and because each breath was a struggle they gave Ami a Nasogastric Intubation feeding tube so she didn’t have to work for her food. (before she exclusively nursed and had never taken bottles.) Also less work for her heart. They also gave her ANOTHER diagnosis. This one ripped my heart out. Failure to THRIVE. I couldn’t and wouldn’t believe it. She was doing amazing. She’s just sick. She will get through this. I have never shed as many tears as I did that day. When I replayed those words over and over in my head. Not to mention while our stay in the hospital. Moms and Dads of babies with Down Syndrome all over were passing away right in left. I just knew God wasn’t ready to take our baby girl away at four months old. Twenty days and after celebrating our first holiday Christmas in the hospital. We were released to go home. Ami stayed healthy with a feeding tube and made it through heart surgery. That meant six months of a clean bill of health.

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