From Alumni Families

I live in Beaverton, OR, with my 15-month-old son, 9-year-old daughter and husband. My son was born in November 2015 with something called Peter's Anomaly, rendering him blind at birth and with pulmonary valve stenosis of the heart. After multiple visits with the eye clinic here, we were told that Carson's eyes were too malformed to try surgery and that, although he could see light, the doctors were not sure how long that would last.

Fast-forward a few months and I met a lifelong friend online (through a support website) who led me to Dr. Aquavella at the Flaum Eye Institute. After sending him Carson’s records, they were confident they could potentially give our son sight. As a result, in mid-April 2016, we flew into Rochester for a 10-day stay and here we are almost a year later with a few Rochester visits under our belt, and my son has vision—great vision, actually!

When I first saw Ronald McDonald House, it was so welcoming and felt like home. The first day, I was met by other parents going through similar things with their children and it just put my nerves at ease before Carson’s surgeries.

My friend who led me to Rochester and RMHC in the first place was there during my first stay, so she introduced me to some pretty amazing women who helped me through our stay. Bonnie and Cher were my go-to gals in my time of need and could answer any questions I had about the house or the town itself. Not to mention, they loved my baby and made me feel like... Read More

I have twins, Charlie and Kadymarie. When I was 26 weeks, I went into labor. Charlie’s water broke, and I didn’t even realize it was happening. Being a first-time mom, I didn’t necessarily know what to expect. I was told I wouldn't be able to have children and four months later I became pregnant with twins naturally.

I had called my doctor at 26 weeks because I was having bad back pain. When I went in, I honestly expected her to come back and say, “This is normal, you are pregnant with twins, you are 26 weeks and they are lying on a nerve in your back.” But then she told me I was dilated and in active labor. They stopped the labor, but then it became a waiting game because I could have gone back into labor at any point. Luckily, we got to stop it and I lasted exactly a month. I was hospitalized the whole time because my son’s water was broken and that becomes risky with infection. I went into active labor at 30 weeks and they were born the next day.

Once the babies came, the biggest issue was being near my kids, as I knew they would be in the NICU for a period of time. The doctor told me that I needed to get in Ronald McDonald House because I lived an hour away, and my husband had to go to work. Plus we only have one car.

My son was in the NICU for 37 days and my daughter was there for 43, and unfortunately, they did not come home together. That was worse than leaving the hospital with neither. My whole mind was “they have each other.” That is what... Read More

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... Read More

I went in to labor at 29 weeks. Until that point, the pregnancy was going well—there was no sign of history, no sign of anything, and I just spontaneously went in to labor. We live in Canandaigua and I was planning to have her at Thompson Health, so I started there and they said she was probably coming that day, so they sent me right up to Strong. They were able to give me the steroid injections for her lungs to develop and they did an ultrasound—they said she was probably around 3 pounds.

They were able to hold off Arie being delivered for three days, just to keep her in there as long as possible. However, it got to the point where it would be more beneficial to deliver her—with my water being broken for more than 48 hours and I kept dilating, but nothing was really happening. I had her November 19, and she was just 3.5 pounds and 14.5 inches long.

I remember they immediately just took her away. They wheeled her out in her little incubator. We never had anyone in our family with a baby who had to be admitted to the hospital, so the NICU was a completely brand-new experience.

I had heard about Ronald McDonald House, but I didn’t know what it was about. Once we were discharged, we went over there. Someone showed us around and I just remember the warmth of the person. We immediately got set up with a room, she showed us the kitchen and the layout of everything. I think the next day we just went home and packed a suitcase and came back and we stayed... Read More

When I was early in my pregnancy, week 26, I found out that Barrett had cystic fibrosis. As a result my OB wanted to transfer me up to the doctors at Strong so I could deliver there. Then, during my 34-week checkup, the doctors immediately sent me to the hospital for preeclampsia and told me I was going to be delivering my baby. Barrett was born six weeks early.

After he was born, he was sent to the NICU. I was still in the hospital because of the C-section, and when I found out that he had to stay, I panicked. Then the nurses told me I already had a room set up at RMHC because I lived two hours away.

When we arrived at the House, they took us on a tour with my husband and step-son. I was impressed—I really didn’t think the House would be like it was. I had heard of the Ronald McDonald House, but I didn’t really know what it was all about. They showed the kitchen and told us we could help ourselves if we were hungry, and we were really impressed. We were glad in the morning that we could get up, have breakfast and a cup of coffee, and then go to the hospital for the day.

Because I wasn’t familiar with RMHC, I didn’t expect volunteers to come in to make food. I figured I would just come back from the hospital, go to the pantry and find something to make for dinner. Then the first time we came back from the hospital and saw this big group of people making food, it was amazing. It really struck me that people wanted to volunteer their time to do that... Read More

When Kyle and I had Lilly, they did her bilirubin test at 15 hours old. They normally do the rest around 24 hours old for a baby, but Lilly was looking very yellow so they moved hers up. For a baby that is 24 hours old, the results shouldn’t be a 5 or higher, but hers was a 26. So she needed to be seen right away.

I delivered her in the Newark hospital, so we stayed there for a couple of hours because they were trying to do everything they could before they transferred her to Rochester. They had her underneath the lights and were getting the tubes ready for the blood transfusion. When we finally got the ambulance, Lilly had to go in a separate one because she had doctors, nurses and EMTS filling hers.

She had the blood transfusion starting at 11am, but we couldn’t see her until 5am. After the procedure, she spent six or seven nights in the NICU. I was able to spend two of those nights in the hospital because I was still post-partum and they needed to keep checking on me. However, after two nights, I was transferred over to RMHC.

When we arrived at RMHC, the woman greeted us with open arms and was so friendly. She answered every question we could think of and showed us where everything was located in the House. My first impression of the House was how beautiful and big it was. I had heard of RMHC before because a couple of my friends had used other houses, but going into it, I didn’t know what to think. However, when I arrived, I said “Wow, this is... Read More

My daughter, Layla, is 1 year old. From 7 or 8 months old, she was experiencing rashes on her tongue. They said it looked like thrush, but it kept getting worse, so we knew it was something more severe than that.

She developed an ulcer on the right side of her tongue that started changing colors; it was black and purple, it would puss and bleed, so they sent her to a specialist in Rochester. The doctor determined it was something called hemangioma, or a tumor in the tongue, which would have to be surgically removed. They reconstructed the tongue and shaved it down to try to fit in her mouth. Basically, it was a birth defect, so they didn’t know if it would take months or years to grow back.

While she was recovering, we had to stay a few days at the Ronald McDonald House Within the Hospital. Since the tongue swelled so much, they had to keep her on a ventilator so she could breathe because her tongue was blocking her airway.

We live over an hour away in Bath, so it was really convenient that we could be somewhere right above her. The people who worked there were very nice and helpful—they gave us a lot of information. They were great at catering to our needs. We didn’t have to eat a lot of the hospital food.

I didn’t really know what RMHC was until we stayed there. Since our experience, I have described Ronald McDonald House to quite a few people. It means a lot to our family. We were going through a hard situation and I didn’t know we would... Read More

My daughter was born February 19, 2016, with opaque corneas. After receiving the devastating news at home in Africa that no operation would be able to give her sight, we started to look abroad to find out if there were any possibilities for her to be able to see.

 

We were referred by doctors in Baltimore to the Flaumm Eye Institute at Strong Memorial Hospital in Rochester. Mariana’s first eye operation was scheduled for September 20 and the second eye for the October 11. In total, we stayed 55 days in the Ronald McDonald House. After surgery at Golisano Children's Hospital, Marianna can now see!

When we arrived at RMHC, we did not know what to expect. It was our first time so far away from home and away from our son. We had no friends or family—we were scared but felt right at home.

So many people helped us through our journey. Just to mention a few:

  • Cher during the day—always friendly, rocking Mariana to sleep, always willing to help.
  • Bonnie during the night—Mariana’s “grandma” spoiled her rotten, as did Theunis, always making a new pot of coffee.
  • Debbie—searching and Googling for us places to see and visit while staying in Rochester.
  • Jeanette and Gwen—volunteer family on Thursday, lending a fishing rod for Theunis to try to catch fish in the canal.
  • Bill—driving us around and dropping us off.
  • The families who stayed at the house—we made so many friends.
  • All the other... Read More

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... Read More

On July 25, my son Cody was born at Strong at 25 weeks gestational. He was 1 pound, 14.7 ounces. There was no reason for his early birth, but it was life changing for us all.

We got to know the Ronald McDonald House because I was discharged from the hospital myself, but emotionally I could not leave—not knowing hour by hour if he was going to survive. Our social worker, Jessica, made a call and got us into the Ronald McDonald House for a couple of days the first time, and then when my son had his hernia surgery, I was able to stay once again.

RMHC means a lot. It will always be in our hearts because they were there when we needed the care and a step away from the crisis and life. It was so refreshing and just something that helped us—seeing something so beautiful at such a horrible time in our life.

It was just a wonderful experience. Every employee was there to talk when you wanted to. Sometimes it was nice to just express our thoughts and feelings with someone who was not our family, because they are all involved emotionally.

If I had to describe RMHC in one word, I would choose loving. We loved it so much that when I had to leave my job, due to my son’s needs, I felt like I needed to be a part of the Ronald McDonald House. Now, I am employed in the House Within the Hospital—so the House is helping my family once again.

... Read More

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