My daughter Annalise was born prematurely at Rochester General Hospital at 36 weeks and two days. At that time, we started to do the genetic testing for Down Syndrome. We spent five weeks in the NICU there and she had a lot of different feeding issues. A few weeks after we came home, she had a reaction to her two-month shot—she started vomiting and going downhill. At this point, we had been diagnosed with her heart condition and we knew something was wrong, so we took her to Strong.
We had our consult with the GI, pediatric cardiology and the entire team. At that point, I was in a room with her, but we were notified of the Ronald McDonald House because they knew we would be there for a couple of weeks. They did the testing and that is when her Hirschsprung disease was diagnosed. We spent three weeks in the hospital and that was when we started using the Ronald McDonald House. We have a 2-year-old son, Braxton, so he was able to use the sibling clubhouse and I usually stayed with her in her room, but Ronald McDonald House was great—they brought meal vouchers to the room so we didn’t have to worry.
My husband and I would just go up there and sit and eat dinner and watch TV away from the wires and everything. We spent three weeks there and then we went home—that was about August or September. Annalise ended up back in the hospital for another few days and then we came home. In November, she had her open-heart surgery. That is when we used the House Within the Hospital the most. It made it a lot easier—she was directly underneath me, and I could go upstairs one floor and take a nap and know she was right there. Anytime she’s been at Strong, I have never left the hospital.
The first time I walked into Ronald McDonald house, I didn’t feel like I was in a hospital anymore. When you’re in the hospital, even in the cafeteria, it feels like you’re in a hospital. It’s all around you, like you can’t escape it because it’s surrounding you. I walked in and it felt like somewhere I could breathe, and I didn't feel like I was in a hospital anymore.
I know specifically one week during our stay in November, I was sick, I think it was 10 at night and I felt so crappy and my husband had left already and the cafeteria was closed and all I wanted was soup, but I had no way to leave the hospital and so I went to Ronald McDonald House. I was talking to them to find something to snack on and the woman told me they had soup, and I had no idea that would be something they would have. I think that was the moment for me, as stupid as that sounds, but I felt so crummy and having them stop me and help made such a difference that night.
If I had to describe RMHC in one word, it would be compassion. One of the things I am most grateful for is that if Annalise was having a bad night, I didn’t have to worry about getting food. I had somewhere I could run to really fast and grab something good enough and they could call me to come back down. I also really appreciated having a room to just sleep and not hear machines beeping or alarms going off.
I knew what RMHC was before Annalise started having her issues, but I didn’t know in-depth what it was. Now that we’ve gone through it, the one thing I think about them is that they helped me stay with my daughter when she needed me the most. I didn't have to be away from her. When we were at one of the hardest times in our life, I could be close to her and I didn't have to worry about being away from her. It gave us the opportunity to keep our family together. At RGH, either my husband or I could be with her, but they didn't have a sibling club house, so one of us would have to stay with my son. So the ability to have my husband with me during a procedure for my daughter, and someone we know is taking care of our son—it was a tremendous help.
I just want to thank everyone there because they actually cared about our children. The doctor’s focus is our daughter and everyone’s focus is our daughter, but Ronald McDonald House not only cared about my daughter, but they made sure they cared about me, my husband and our son. They took care of us when our job was to take care of her. It was like having friends you never expected to have who became sort of a family. I just want to thank everyone because there’s no way we could have gotten through what we did without Ronald McDonald House.
No one wants to be in the hospital with their 8-month-old daughter having open-heart surgery. In such a horrible situation that’s terrifying and scary, we have been able to meet incredible people who genuinely care about our family. It’s one of the silver linings of going through this horrible thing—look who we have met because we did.
Annalise is 9 months old now. She is doing very well. She is having outpatient surgery soon for her hernia repair, but heart-wise and intestinal-wise, she’s doing remarkable. She is stronger than ever—she’s on to solid foods, is starting physical therapy to learn how to crawl and just said her first word last week, “Dada.” She is a completely different baby. She is just hitting milestones and it’s so great to watch her personality flourish. She’s my little hero. I have no idea how she’s gone through what she has and still smiles and giggles.