Family Stories

Myla’s Story


Myla’s story all started in June of 2009. My son Drake was finally one and my husband Dan and I started talking about getting pregnant again. I had to take fertility treatments with Drake, so we figured we would have to do the same this time – but by the time we had gotten home from a July vacation I was already pregnant!

I had some minor spotting in the beginning of the pregnancy so I was seeing a perinatologist. After going in for my 25 week check up on Nov. 31, everything looked great. She was even measuring big!

Later that night I woke up to severe pain that would NOT go away. I called the hospital and they said if it didn't go away in a few minutes to come in. The pain got worse, so we sent Drake to a friend’s house for the night and made what felt like the longest ride into Las Vegas from our home in Pahrump. We arrived at St. Rose Hospital - San Martin campus where they admitted me and tried to stop the contractions. It wasn’t until 7:00 AM the next morning that doctors discovered my placenta had ruptured and I had a blood clot. This put both the baby and I in grave danger, and they decided to do an emergency C-section.

Myla June was born at 7:43 AM on Dec 1, 2009. She weighed 880 grams, or 1 lb. 15oz. Within 24 hours of being born, Myla developed grade three and grade four bleeds on her brain. We were informed that the next two weeks were the most critical. The doctors told us that she would probably be severely disabled if she survived and they asked if we wanted them to continue treatment. Our answer was YES!!!

Myla was put on a ventilator and we had to be very quiet and gentle when we touched her. Due to her level of prematurity, simply placing your hand on her gently could cause pain. They gave her Morphine to keep her from getting agitated. On December 7th, Myla suffered a perforated bowel and had to have a drain placed in her tummy to help it heal and she went on the first of many antibiotic treatments.

On December 18th they had to place a port in her brain to drain excess fluid. Myla had developed hydrocephalus – scar tissue from her brain bleeds prevented the spinal fluid from absorbing, so it would build up and put pressure on her brain. There was a little knob on top of her head and they would drain the fluid every few days. The doctors said she would have to be bigger before they could place a permanent one.

On Christmas Eve Myla had to have surgery to close a hole in her heart. Due to her size and all of her breathing problems, the procedure caused her left lung to collapse and she was struggling to survive. Her blood sugars and blood pressure were all over the place and they couldn't keep her O2 levels up. The doctors said she would get worse before she would get better. Her color was gray and she was dying. “Please don't take my baby,” I pleaded, “not on Christmas!”

Christmas morning I called for a check-up and she was doing GREAT! On January 3rd, Myla finally came off of the ventilator. She still needed assistance, but no tubes down her throat. January 7th was the first time I got to hold her. She was 7 weeks old.

On January 16th Myla was placed in isolation because she had the Rota Virus and C-Diff, a microorganism growing in her bowels. Luckily the treatment was just antibiotics.

February 15 was the day she finally had her shunt placed in her head to drain the spinal fluid. All went well and she was doing great. She even started taking the bottle a few days later. On March 17th Myla had a feeding tube placed. After weeks of trying she just couldn't get the hang of eating from a bottle.

We were scheduled to go home on March 28th. Dan and I roomed in all weekend to show the doctors we could care for her and knew how to use the feeding pump, how to hook up her oxygen, how to place and use the monitors and how to administer her meds. We were packed and ready to go when the neurosurgeon finally came in and told us Myla needed ANOTHER surgery. Not all three ventricles were communicating with her shunt and she would have to correct it.

The surgery did not go well and Myla had to have the entire shunt removed. She got a horrible infection and had to go on another set of antibiotics for 10-21 days! Myla was very sick for these few weeks. They placed an external port that drained the fluid off into a reservoir next to her bed. We couldn't hold her because if we moved her the drain would either drain too fast or too slow. On April 5th a central line was placed near her heart to pump antibiotics into her little body to fight off the infection.

On April 19th, Myla had the final shunt placed – this time on the right side of her brain with an extension in to the rear ventricle. One week later, on Monday, April 26th, MYLA CAME HOME!!!

For those of you counting, she stayed 146 days in the hospital and had 9 surgeries in 4 months on her tiny little body. She came home on an apnea monitor for sleeping and a feeding tube with a pump. No oxygen.


Myla has been home now for almost two months and is doing very well. She has started to coo and smile and is trying to hold her head up. The doctors all say she looks great and is developing on track for her adjusted age. We have many more doctor appointments and lots of therapy ahead of us, but at least we have her!

Throughout this entire journey my mother flew in from Michigan to support my husband and I and help take care of my son Drake. We were all able to stay together at the Ronald McDonald House. They went out of their way to listen and really took an interest in our little family. We celebrated Christmas, New Years, Valentine’s Day, St. Patrick's Day, Easter and my mom and Drake's birthdays at the House. In addition to the little things they did everyday, they really went above and beyond on these days to make us feel extra special and bring joy into our lives. We will forever be grateful to the entire staff and our friends at RMH.


The Bemke Family
Dan, Richelle, Drake and Myla

 


“Happy Birthday to Mary!”

Mary Stroud is a very friendly and familiar face at the Las Vegas Ronald McDonald House (RMH). Every morning she can be found in the front room waiting patiently for a ride to University Medical Center (UMC) to visit her granddaughter. While she waits, she crochets. She crochets baby blankets, hats, and booties for her church back home in Moreno Valley, CA.

Mary first walked through the doors of our House on December 17, 2009. Her granddaughter Meco, 21, had been involved in a traumatic rollover accident outside of Needles, CA and was flown to UMC in Las Vegas with life-threatening injuries. When Mary received the phone call about the accident, the officer told her that she’d have to come to Las Vegas to identify the body. This immediately made Mary think that her granddaughter had not survived.

Still in her nightgown, Mary went directly to her church. She had no way to get to Las Vegas. Upon hearing the story, the church’s minister purchased tickets for Mary and her daughter to fly to Las Vegas. When Mary arrived at UMC, she was relieved to find out that Meco was still alive. But the relief was only temporary. Meco had suffered extreme injuries, including several fractures to her skull. She was in a coma, on a respirator, and they did not expect her to live.

At the time of the accident, Meco was returning home to California after a trip to Texas with friends. She was studying to become a registered nurse and was looking into serving in the Army. Mary had raised Meco from the day she was born. She describes her granddaughter as bright, spirited and full of love. Meco also loved to sing and was very active in her local church – the same church that flew Mary to Las Vegas.

Around Christmas, Meco came out of her coma. Doctors told Mary that while her chances of survival were much better, she would never be able to hear, see or speak again. But Mary never gave up hope. She has been by her side every day since the accident, and will continue to be until the day Meco is released. Meco has only recently begun to open her eyes. She can see out of her right eye and hear on her right side. She still cannot speak, but is able to communicate with hand gestures. And while she still has a long road of recovery ahead of her, Mary knows that her granddaughter will one day sing again.

On January 31, Mary celebrated her 69th birthday. She was far away from home and her family and friends, so the Las Vegas Ronald McDonald House staff made every effort to make sure Mary’s day was special. When she came home from the hospital that evening, she was greeted with a bag full of gifts, a homemade cake, and a special birthday tiara. And as RMH staff and fellow families sang a very out of tune “Happy Birthday,” we were all wishing that Meco would be the one to sing “Happy Birthday” to Mary next year.


The Hulse Family


Dear Ronald McDonald House, I have started to write this thank you so many times and each time I find myself at a loss for words to express the depth of my gratitude for your home and the people within it. So, after a year I thought I would just write from my heart.

When you are pregnant you never think that there will be anything wrong with your baby. You find yourself saying things like "We just want a healthy baby," but you never truly believe that you won't have a healthy baby ... the optimism is inherent. Then that picture is shattered, either before birth or right after and you feel like you have just entered into some sort of nightmare and you will wake up and things will be fine ... except you don't wake up.

When the pediatrician walked into my hospital room and said to me (actually I have no idea what she said to me) all I remember was “transport to Sunrise Children's Hospital, rushing discharge papers, transport team will arrive” .... that's it, that's all I remember. That and the incredible dread .... you see my husband had gone home to shower and was coming back to take mommy and baby home. I will never in my life forget his smiling face walking in and instantly falling when he saw me sitting on the bed sobbing. At some point we both went on auto pilot. Dealing with insurance companies and trying to understand what the doctor's were saying, the social workers showing up with books about heart defects ... the social worker literally lead us out of the hospital and pointed us in your direction ... saying that everything had been arranged and that you were expecting us.

When we entered the Ronald McDonald house we were greeted with instant hugs and overwhelming kindness. We asked how much it was a night and the staff just said we don't worry about things like that right now. You can stay as long as you need to. We were given a tour of the house and reminded repeatedly that we were to make ourselves at home and that if we needed anything to just ask. We never thought we would be there almost a month!

The staff was concerned, without being intrusive. Every night when we came “home,” someone asked about our son, Ronald, and how he was doing, and you cared - really cared. What a blessing in such an uncertain time. When we left we thought what an amazing place ...I am glad it was here for us.

I never thought we would be back. Three months later we were back on your doorstep, sad and incredibly scared for our son. Again your staff showed us incredible hospitality and compassion for our situation. Someone always took the time to ask about Ronald and how he was doing and was there anything they could do for us ...it meant a lot! I am pleased to say that since Ronald's last surgery he has been doing fine. His heart is very stable! I hope that we will never have to cross your threshold again, but I know if we do we will be met with warmth and compassion. I believe that we are surrounded by angels, both seen and unseen that lift us up when we cannot get up ourselves. Thank you for being our angels! I am thankful to have walked in your midst.

Sincerely,


Conni Hulse
Mother of Ronald Hulse Sincerely,

Ronald Hulse at his 1st Birthday party -
getting ready to enjoy his cake!

The Hulse family lives in Golden Valley, AZ. They stayed at the Las Vegas Ronald McDonald House for a month following Ronald’s birth in April, 2008, and returned later that summer for a surgical procedure to repair his heart.


The Petersons

When Regan Peterson came to Las Vegas for a work conference, she never expected to find herself at the Ronald McDonald House. She ended up getting sick on the last day of the conference, and her husband Brian and two children, Alyssa (8) and Aaron (3), drove from their home in Phoenix to pick her up. Along the way however, they were involved in terrible rollover accident near Kingman, AZ. Alyssa’s foot was crushed in the accident, and she was brought to Sunrise Children’s Hospital where doctors worked to salvage her limb. As it turned out, they were able to save the foot, but the large toe had to be amputated. Regan later commented that “it’s hard to be sad about a toe when she survived such a devastating accident.” During the family’s week long stay at the House, Alyssa’s grandparents came to help take care of Aaron and provide emotional support to the family. Upon checking out, her grandfather made a generous donation to our Share-A-Night program, which allows families to stay at the House when they can’t afford our $10 a night donation.

“We were so far from home during this difficult time and the House was such a blessing for our family - especially because we have a three-year-old son. Alyssa is recovering well. We are praying for continued healing in her foot. Thank you for everything you did for us. We will never forget it.

- The Petersons


The Paau Family

“My son Trennon Paau’s story begins way before his birth. In the year 2000, I became pregnant. The first three months were considered high-risk, but with the help of modern medicine, we made it through that critical first trimester. Then much to our dismay, my water broke at 21 weeks. On February 1, 2001, I gave birth to my daughter, Faith Marie Paau. Being so premature, she only lived a brief thirty minutes.


Nearly a year later, I found out I was pregnant again. The pregnancy began with the same high-risk concerns, but once again the first trimester went well. We found out about a procedure that could help prolong my pregnancy in the instance of an inevitable premature labor. It wasn’t considered a standard practice of medicine and was a risk, but a risk we were willing to take. I just couldn’t lose another child!


We had the procedure performed, and during my third week of bed rest I started spotting - my baby was kicking me where sutures had been placed! Our doctor prescribed some relaxation medication, and within a few days the spotting stopped. By the next week, my baby had turned and was kicking me in my ribs. Boy, that was a huge sigh of relief!


Unfortunately, the relief didn’t last long. The spotting started again one week later, and contractions followed shortly. The decision was made to fly me by Black Hawk helicopter to University Medical Center (UMC) in Las Vegas. Three days later, in the early morning of November 11, 2002, my water broke. At 9:45am, Trennon was born via c- section. He was born at 25 weeks, weighed only one pound, twelve ounces and was only 11½ inches long. We knew it would be a long, tough road and that the odds were stacked against his survival, but we never gave up hope.


When I look at him now and see his progress, I am overwhelmed with the love that I have for him. He is my salvation, sunshine and my dreams rolled all into one. When I hold him, I cry tears of joy and can’t believe we have been blessed with such a wonderful gift. I know that he is extra special because he has his very own guardian angel - his big sister Faith.


"I thank all of his heroes - Dr. Brizuela, the entire NICU staff at UMC, and our wonderful family at the Ronald McDonald House.”


- Crystal Paau


Little Trennon fought hard through those first months of life and was finally able to come home in February of 2003. Crystal and her husband Chad relocated to Las Vegas, and were thrilled to begin life as a family of three!


The Adams Family

Dear Ronald McDonald House, To us, the Ronald McDonald House was always just that box where we dropped our change at the drive-thru. That changed, as did our lives, in March of 1999 when we were told that our daughter Amber (11) had a severe narrowing in the artery that delivers blood to her lower body. We were sent to the Ronald McDonald House in Las Vegas by her cardiologist and found that everything was all set up and the staff was waiting for us. After her surgery, Amber spent a week in I.C.U., and the Ronald McDonald House took care of me, my wife Robin, and our two sons P.J. and Max by providing us a comfortable, “homey” atmosphere that greatly reduced our stress. In October 1999, Robin, Amber and I were again welcomed by the Ronald McDonald


House when Amber had a heart catheter procedure. We were told that the ends of the graft placed in her aorta in March were closing because of scar tissue and we had to take her to San Francisco for a special procedure. Then on March 2, 2002, one of Amber’s stints shifted and cut a hole in her aorta and esophagus. She lost over half of her blood and developed a severe bacterial infection in her bloodstream. She had emergency surgery that afternoon. As I write this, I am sitting at a table in the dining room of the House in Las Vegas where I have shared meals for the last 45 days with my family, the staff and volunteers of the House. I am not sure how long Amber will be in the hospital, or how long after her release we will stay here. But I am sure that no matter how long it may be, the staff and volunteers will be here for us. These people will forever be in our hearts. We will continue to stop in just to say “hi” or try to help with fundraisers for this miraculous team of people. I cannot think of any words that express it as deeply as we feel it, so I must simply say “Thank You.”

- Minor M. Adams


The Gerling Family

In October of 1998, Dean and Erika Gerling stayed at the Ronald McDonald House for 13 days when their son Christopher was born 6 weeks premature. Erika delivered Christopher on the roof of ValleyHospital after arriving by helicopter from Beatty, NV. The nurses then gave him the nickname “Chopper,” which is what he is known by today.


Over the years the Gerlings have faithfully supported RMHC by collecting pop tabs and donating their spare change into the canisters at McDonald’s restaurants. Chopper is now a student at BeattyElementary School, and in 2006 his class collected the most pop tabs out of the whole school. As their reward, the class had a Happy Meal lunch with Ronald McDonald here at the Ronald McDonald House.


It truly warms our hearts to know that this family still thinks of us and is continuing to pay forward their gratitude. The Gerlings were one of the first families to stay at the Las Vegas House, and we look forward to knowing them for many years to come.


The Pulcinella Family

We always love hearing from families who have stayed with us, and no one has kept in touch like the Pulcinellas. Tony and Jennifer Pulcinella stayed with us for four months in 2002 when their daughter Claudia was born three months premature. At 1 pound and 4 ounces, Claudia could have fit in the palm of their hands.


The Pulcinellas felt overwhelmed. When a newborn is that small, the first three months are “touch and go.” They risk brain bleeds, organ failure, respiratory infection, and because their immune systems are so fragile, the simplest germs can cause a fatal illness. On top of which, the Pulcinellas were far away from friends, family and their home in Delaware.


When the Pulcinellas’ left the Ronald McDonald House in February of 2003, their journey was far from over. Claudia was transferred from Las Vegas to the Children’s Hospital of Philadelphia for further treatment. Finally in May of 2003 Claudia arrived at her home in Lewes, Delaware for the very first time. She was still on a breathing machine and required 24 hour care, but in-home nursing and regular therapy sessions helped take some of the burden off of Jen and Tony.


In an article written this past September by Patricia V. Rivera of The News Journal in Delaware, Jennifer talks about her experience in Las Vegas:
“‘As I was losing my mind, feeling sorry for us being so far away, with such a small baby, and none of the creature comforts of home, a mom came up to me and gave me a hug. She said to me ‘They all grow. Come see mine, he has the biggest feet, they look like flippers.’“


They laughed and bonded over several months. “I was empowered,” Pulcinella added. “Just knowing you’re not alone gives you the security to face the next obstacle.” She remembers homemade dinners at the Ronald McDonald House, nurses who introduced her to someone else from the East Coast, a therapist who she found singing to Claudia as she gave treatments. “Those simple gestures can change everything. I can’t pay forward enough for what they’ve done for us,” she said.”


Over the past few years, the Pulcinellas have included us in their lives and allowed us to watch Claudia’s incredible journey through life. In June of 2005 she reached a huge milestone when doctors removed her trach tube, allowing her to breath on her own for the very first time. In October 2005, Claudia celebrated her third birthday, and it seems as though life for the Pulcinellas is finally getting back to normal.


In a recent e-mail, Tony wrote, “I just wanted to say thanks for showing us how wonderful the Ronald McDonald House can be...you guys have a special place in our hearts.”


The Cox Family

Early in July of 2005, Mr. and Mrs. Panteleeff walked through our doors with the weight of the world on their shoulders. Their daughter and her family of five had just been airlifted to UMC trauma center after a terrible car accident on I-15. After two weeks, dad and the three boys, ages 13, 8 and 4, had been released from the hospital. Their mom, however, was still in critical condition.


Over the next three weeks, dad spent most of his time at the hospital, and grandparents Josie and George Panteleeff took excellent care to keep the boys busy and upbeat while they waited for good news. The boys were extremely well-mannered, considerate, and able to entertain themselves without disturbing the House. Each afternoon they serenaded us on the piano and spent many hours creating “Get Well” cards for their mom.


Mrs. Cox was released from the hospital August 1 and the family flew home to Kamuela, Hawaii the next day. It was inspiring to see how strong and positive this family was during such a traumatic time in their lives. They greeted everyone with a hello and a smile, and often asked if there was anything they could do to help around the house. When families like the Cox’s stay with us, it fills the House with wonderful feelings of warmth, togetherness and hope.


Princess Kimi

In March of 2005, Clark and Hazel De Los Santos found themselves in need of a place to stay while their 2 year old daughter Kimi received treatment at Sunrise Children’s Hospital. Kimi was diagnosed with an aggressive form of cancer in April of 2004. She had just been through a major surgery and was looking at months of chemotherapy treatment.


Shortly after leaving the House in May, Clark and Hazel were given the horrible news that Kimi had just a few short weeks to live. We worked closely with Make-A-Wish to send them to Disneyland, where Kimi personally met all the Disney princesses. When they returned, RMHC invited Kimi’s family and friends to a birthday party that all little girls dream of, even though her birthday wasn’t until October. We had a petting zoo with furry and exotic animals, a pony ride, two cakes, and lots of presents.


On June 23, 2005, Princess Kimi lost her battle with cancer. There was no way of knowing how much we would be affected by Clark, Hazel, and especially Kimi. With her high pitched "I love you," beautiful smile, and perfect pink dresses, she warmed the heart of everyone who met her. Even though we only knew Kimi for a few short months, she will live in our hearts forever.