When I was pregnant, my first trimester screen came back higher risk for Down Syndrome, and when I was 28 weeks pregnant, we went for the fetal echo and found that our Sophie had a heart defect. My OB preferred that I deliver at Strong, just in case she needed surgery right away. She didn’t want me being separated from my baby. We live in Vernon.
When I was 34 weeks pregnant, I started not feeling well. I was in so much pain that I could barely breathe. I went to the hospital in Oneida and they thought it was my gallbladder, so I stayed there through the day and night. Monday morning, they told me they wanted me to go to Rochester to be seen at Strong and sent me to triage. When I arrived, they were waiting for me and the secretary knew exactly who I was. I thought, “This is not good.”
Within a few hours of arriving, they told me that I had a lot of defining symptoms of HELLP syndrome and severe pre-eclampsia. This means my liver could have burst. I was 34 weeks. When your baby has a heart defect, every day being pregnant counts. They admitted me to a high-risk, anti-partum unit in late February and told me they wanted me to make it to 36 weeks because of her heart. I only made it until Thursday, March 3.
Sophie was born at 9:24 pm. She was five weeks and one day early. She did great, but had to go to the NICU for being so premature. They did bloodwork on her and we found out about a week after she was born that she did have Down Syndrome, on top of her heart defect, so we ended up being in the NICU for about two months.
When I was staying at Ronald McDonald House while Sophie was still under care at Strong, my husband came on the weekends to be with us. It was 58 days all together that she was in the NICU and I basically lived at the Westmoreland House for that entire time.
The Ronald McDonald house was what I called home for two months. I don’t know how to thank everybody for being there and for having a place to come home to after being at the hospital for 10-12 hours and having a home-cooked meal ready for me.
We were finally able to come home on May 1. Because of her heart defect, they wanted her to come home and gain weight—the doctors didn’t want to do surgery right away. We had to wait for her to be older and stronger.
When she was ready, her surgery took place on October 20, 2016, at 7:30 in the morning with Dr. Alferi. He said things went better than expected and they fixed her heart.
We were in the hospital for eight days. While she was in the ICU, we stayed right at the RMHC at the hospital. I was moved to the Westmoreland House when she was more stable.
I cannot thank everybody enough. You’re there for your kid and don’t care what else is going on. You don’t care about cooking, that’s not on your mind. The staff was so friendly and loving. They were always right there if you needed to talk, especially if you were staying by yourself. The houses were very clean, very well kept and very homey. There’s no place like home, but when you need a place to stay in a situation like ours, it was definitely home for us.
I want to thank Bonnie and Cher at the Westmoreland House because those two helped me the most and I just want to recognize them. Bonnie was always there in the evening when I’d get back from the hospital and there were nights when I would just sit and talk with her and she was always a shoulder to lean on. They’re all amazing and all have big hearts, every one of them.
When Sophie is older, we will definitely be coming back to cook a home-cooked meal for the families because we want to give back.