In 2000 I found out I was pregneant. Months went by and she was growing fine until the 3rd trimester. She began to fall back. My due date went from Sept. 15-18, to Oct. 3-5. I had a difficult time during the pregneancy. I was hospitalized many times even passing out while I would be out shopping or stood for to long. Docs didn't know why.
When I got close to my first due date I began having contractions which when I got to the hospital was told that I was not having any and that it was all in my head. Hours later I was sent home. Less than three hours later the pain was back. Unsure what to do I laid in bed for a few more hours until my crying woke my husband. He convinced me to go to the hospital. She was on her way out but the nurse wasnt comfortable delivering her so we waited for the doc. One push and she came.
She seemed fine but she couldnt keep her glucose level stable so they took her to NICU. Hours later a doctor comes and says" Do you know what down syndrome is, we think she has it." I was by myself so I immediately called my husband and told him to come back to the hospital. A couple more hours later we saw Alexus. She had tubes and IV's everywhere. They told me Alexus wasn't thriving and she needed to stay in NICU because according to my due date #2 she was early.
Checkout came and we left alone. I bought a breast pump and would go back to the hospital to try and feed her. We tried to get just an ounce in her that would take about 45-60 min. To long for their expectations. Oct 3rd came and they let us take Alexus home IV free. Weeks went by feeding was every 2-3 hours with not much more success. Then I noticed that she was dusky.
My mother in law and I went to the ER. Where I was asked "ARE YOU STARVING YOUR BABY?" "NOOO!" I told them. Next thing im being asked all sorts of questions not pertaining to why I initially brought her for. They eventually sent us to another hospital. Where more tests were done, spinal tap, gastro, x-rays, blood cultures. Nothing.
Then a doc came in just getting back from the east coast. He ordered a specific test. A week or so later the results. Zellweger Syndrome, prognosis death time not sure. One day later we took Alexus home she had a nasal tube that feed her continuosly and an oxygen tank. By now I realized I needed help. We got a night nurse to help with caring for her. A week later.
December 3, 2001 Alexus passed away.