Baby Charlie/Willis Rimmer Benefit
Donation protected
My dear sweet Charlie baby;
She was conceived of love, and like any new parents to be, we went to the doctor. The doctor performed a sonogram early on and told us that Charlie showed a couple markers for Down Syndrome. Joreida (Charlie’s Mother) and I discussed it and decided that we were pro-life and would accept and love any child God provided. Some of the later sonograms showed no signs of Down Syndrome. The day Charlie was born July 12, 2016, she was beautiful! Charlie scored an 8 on the apgar scale. Later that night I was holding her skin to skin when I asked if she had pooped yet. The nurse took her from me for a closer look. Charlie did not have an exit. We were rushed to St Josephs hospital in Denver where it was quickly discovered her lower intestine was not extended all the way to her bottom and there was no exit if it were. Emergency surgery was performed when she was 1 day old putting an ostomy bag in place. Charlie spent the next 29 days in the NICU. The third day in the hospital genetic testing was performed where we learned that our baby has a third chromosome called trisomy 21 or Down Syndrome. I think this endeared her to me even more, if that is even possible. I will also add that this was the least of our concern. When she finally got home nearly a month after birth we had some other follow up cardiology tests performed. These tests showed that Charlie has a normally formed heart, though it does have a PDA and something else I cannot recall at this moment. Basically these are openings that normally close a few weeks after birth, hers remain open. This will need to be addressed in the future but not urgent. The immediate plan was to have 2 follow on surgeries correcting her lower intestine exit. On October 12, 2016 at 3 months old we had the surgery to form an exit and connect her lower intestine to the newly formed exit. Many tests were performed prior to this surgery indicating that she has everything in place, making her a great candidate for this operation. The surgery took 4 hours and by all accounts seemed to be a success. We only spent 1 day in the hospital. Back at home Charlie was miserable and not her usual kind loving self. We attributed this to the surgery. When she did not get better the following week and was in constant pain we went back to the hospital. Her white blood count was very high indicating an infection, though it still hasn’t been determined from what. What we do know is that Charlie is no longer passing urine on her own. We spent 7 days in the hospital this time. Charlie is at home now and we must catheterize her every 4 hours. We are planning on a third and final surgery to reverse the ostomy in late December. She is a tough little girl that hasn’t known many good days, we love her and believe in her, she will make it.
All of this has caused a tremendous emotional, physical and financial impact upon our family. We are fortunate to have insurance through my work. Still, the bills keep us up some nights wondering how to make ends meet. Not only do we have the deductible, and max out of pocket expense. Living in a hospital for so many days has been expensive and will continue to be with additional work to be done. Joreida, also receives no pay when she is not able to work due to being with Charlie. Our baby will not stay in the hospital alone. Children’s hospital Denver has been most gracious and understanding of this.
She was conceived of love, and like any new parents to be, we went to the doctor. The doctor performed a sonogram early on and told us that Charlie showed a couple markers for Down Syndrome. Joreida (Charlie’s Mother) and I discussed it and decided that we were pro-life and would accept and love any child God provided. Some of the later sonograms showed no signs of Down Syndrome. The day Charlie was born July 12, 2016, she was beautiful! Charlie scored an 8 on the apgar scale. Later that night I was holding her skin to skin when I asked if she had pooped yet. The nurse took her from me for a closer look. Charlie did not have an exit. We were rushed to St Josephs hospital in Denver where it was quickly discovered her lower intestine was not extended all the way to her bottom and there was no exit if it were. Emergency surgery was performed when she was 1 day old putting an ostomy bag in place. Charlie spent the next 29 days in the NICU. The third day in the hospital genetic testing was performed where we learned that our baby has a third chromosome called trisomy 21 or Down Syndrome. I think this endeared her to me even more, if that is even possible. I will also add that this was the least of our concern. When she finally got home nearly a month after birth we had some other follow up cardiology tests performed. These tests showed that Charlie has a normally formed heart, though it does have a PDA and something else I cannot recall at this moment. Basically these are openings that normally close a few weeks after birth, hers remain open. This will need to be addressed in the future but not urgent. The immediate plan was to have 2 follow on surgeries correcting her lower intestine exit. On October 12, 2016 at 3 months old we had the surgery to form an exit and connect her lower intestine to the newly formed exit. Many tests were performed prior to this surgery indicating that she has everything in place, making her a great candidate for this operation. The surgery took 4 hours and by all accounts seemed to be a success. We only spent 1 day in the hospital. Back at home Charlie was miserable and not her usual kind loving self. We attributed this to the surgery. When she did not get better the following week and was in constant pain we went back to the hospital. Her white blood count was very high indicating an infection, though it still hasn’t been determined from what. What we do know is that Charlie is no longer passing urine on her own. We spent 7 days in the hospital this time. Charlie is at home now and we must catheterize her every 4 hours. We are planning on a third and final surgery to reverse the ostomy in late December. She is a tough little girl that hasn’t known many good days, we love her and believe in her, she will make it.
All of this has caused a tremendous emotional, physical and financial impact upon our family. We are fortunate to have insurance through my work. Still, the bills keep us up some nights wondering how to make ends meet. Not only do we have the deductible, and max out of pocket expense. Living in a hospital for so many days has been expensive and will continue to be with additional work to be done. Joreida, also receives no pay when she is not able to work due to being with Charlie. Our baby will not stay in the hospital alone. Children’s hospital Denver has been most gracious and understanding of this.
Organizer and beneficiary
Ginger Foy Pratt
Organizer
Crestview, FL
Willis Rimmer
Beneficiary
