Tommy Lloyd

We found out Tommy had a congenital heart defect called Transposition of the Great Arteries during my 20th week of pregnancy, anatomy ultrasound. He was very stable during pregnancy, but it was extremely important that I deliver him in Milwaukee for him to have immediate care by the NICU and cardiac team. Tommy’s condition is one in which the two main arteries of the heart are “switched.” Instead of one artery bringing blood to the lungs to get oxygenated, and one to bring that oxygenated blood to the body, his heart was a closed circuit. Oxygenated blood circled through his heart and back to his lungs, never being pumped out to his body, basically incompatible with life. I was induced at Froedtert at 39 weeks so the team from Children’s could immediately intervene after surgery. 30 minutes after birth, he had a procedure where a small hole was created in between the chambers of his heart to allow some of that oxygenated blood to pass. This “bought some time” before he needed to have his complete open heart surgery. At 5 days old, Tommy had open heart surgery. His recovery went smoothly, and we were in constant awe of the amazing team at Children’s. Not only were they concerned about keeping our child safe, comfortable, and in a healing environment, but they took care of us as a whole family. We left the hospital for home after 20 days. He did amazing and had no residual effects. At his 6 month check, his cardiologist gave us the devastating news that his pulmonary artery was getting too stenotic, or tight, making his heart have to work too hard. She thought this could be opened with a catheter, but when this procedure was attempted, it was too severe. We have to schedule another open heart surgery. Approximately 1 week after the 1 year anniversary of his first open heart surgery, he went in for the second. This surgery was long, and complex, and the surgeon had to actually open up his pulmonary valve and create a patch (unanticipated). Luckily, Tommy had another smooth recovery and we were out of the hospital in 4 days! 

Tommy’s prognosis is very good. He has to have cardiology check ups and echocardiograms every 6 months to ensure everything is stable. He will eventually need to have a valve replacement, as the patch that needed to be placed causes some “leakage.” We are hoping to get him to adulthood before this happens!

We can never thank the team at Children’s enough for giving us our child’s life back. Instead of grief and sorrow, we are able to celebrate his life with joy and hope for the future. 

Simon Ford-Gustafson

It all began with a 911 call. . 

On Sunday, February 28th 2010 our son Simon was born, prematurely at 26 weeks and weighing at 1 pound 15 ounces and a mere 13 inches long. He had difficulty from the beginning with feeding issues. He couldn't coordinate his eating with swallowing and breathing at the same time. This caused Simon to stop breathing and stop his oxygen flow to his intestines and other organs. When he  was four days old he needed an emergency surgery to repair a hole in his bowel/intestinal area.

The surgery was a success. We thought that was the last of surgeries for Simon. But as days and weeks went  on he still had issues with feeding and digesting his food and breathing. After 7 weeks at Aurora Hospital  in Green Bay we were transferred to Children's Hospital of Milwaukee. From there Simon was put on  TPN, a protein in his IV to help get nutrients. Many children never get off of TPN, but luckily Simon eventually did. Simon had many more surgeries in Milwaukee for his stomach, intestines and hernias.  When Simon was in the hospital he had a hard time eating from a bottle and we were told he may need  a feeding tube. We didn’t care. We just wanted him healthy and strong enough to come home. The nurses at Children’s Hospital also stated he may have issues with speech as he became older. 
Simon came home in July of 2010 with a feeding tube and a month after we came home we had to go  back to Milwaukee due to Simon having an infection from one of his sutures from his last surgery. It was  meant to be to go to Milwaukee since he was then given the Mickey button and to start feeding him by  mouth to see if he could handle that. He did! A year later, in September of 2011 his feeding tube was removed. 
Today he still has issues with his intestines but is tube free and an active 10 year old boy. He is currently  in fifth grade and has help with speech and occupational therapy at school. He loves to be outside, play baseball, and football. He also likes to take long bike rides and find adventure wherever he can. With the Covid-19 outbreak our adventures kept us home and we didn’t travel out of state like we  normally would have this year but still managed to have fun and make good memories. 

The Hardwick Twins

In July 2017, Tom and I (Michelle) were thrilled to learn we were pregnant! At 10 weeks pregnant, we learned we were expecting TWO babies! A week later, it was confirmed that our twins were monoamniotic monochorionic (mono mono) twins. Only 1% of twins are mono mono. What makes mono mono twins special is that they share an amniotic sac and placenta. Our babies umbilical cords were certain to tangle and there were risks of entanglement, compression, strangulation, TTTS, and certain premature birth. We were determined to do everything we could to ensure we would overcome the 50% survival rate for mono mono twins. 

At 26 weeks pregnant, we moved into ThedaCare hospital for constant monitoring and to ensure our babies’ safety. We were planning to deliver at 34 weeks-the time it was determined it would be safer for our babies to grow outside rather than remain in my belly.

We were scared, knowing our children would be born premature, and likely face challenges bigger than themselves. The wonderful doctors at Children’s Hospital met with us several times to help us prepare for our anticipated stay in the Neonatal Intensive Care Unit (NICU), and they showed us care and compassion before our family even started to officially be under their care. 
On New Year’s Day, at 30 weeks and 2 days pregnant, my water broke….and the girls’ birth via c-section was quickly planned ahead of schedule!

January 1, 2018, 9:29a.m., Baby A-Paisley Meadow Lippart Hardwick 3lbs 11oz and Baby B-Hazel Hedda Lippart Hardwick 3lbs 1oz entered the world. 

Being born 10 weeks early, Paisley and Hazel were tiny and couldn't breathe on their own, so we had to wait to hold them. They moved to Children's Hospital NICU within minutes of birth, while we remained in ThedaCare hospital. 

Paisley and Hazel had to fight for life before and after they were born. They were challenged with jaundice, NEC (Paisley), chronic lung disease, bradycardias, regulating their body temperature and other health issues because they were born prematurely. They were brave little troopers through every needle poke, scan, breathing apparatus and feeding tube.

Paisley and Hazel had the best nurses and doctors care for them (and us). One of the hardest things we’ve ever had to do is leave our newborn children at the hospital with complete strangers, after I was discharged, but we knew from the beginning that our girls were in the best hands. And the doctors and nurses who were strangers at first, became our second family during our long NICU stay. 

Paisley and Hazel’s due date passed on March 10 and they needed a little extra time to learn to eat on their own. Learning to feed from a bottle is hard stuff for preemies!
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After 73 days in the NICU, the girls had grown over twice their birth weight, no longer needed oxygen and were able to drink from a bottle. We were finally able to bring our bundles of joy home! Our journey continues but thankfully we just now visit Children’s Hospital for doctor’s appointments and have no more hospital stays. We are eternally grateful for the exceptional care Children’s Hospital provided for our family and appreciate having this level of medical care available in our community!

Joey Rubin

As a parent you are never prepared for a doctor telling you that your child may have a brain tumor but that is what happened seven in a half years ago to my son, Joey a student at SNC. 

At first, Joey was treated at a hospital near our home, which is about 25 miles north of Chicago. The doctor was abrupt and had zero compassion for our situation.  

A few days later, a friend of mine recommended a neurologist, Dr. Douglas Nordli, Jr. and neurosurgeon, Dr. Tad Tomita at Ann and Robert H. Lurie Children’s Hospital of Chicago at Children's Miracle Network Hospital. We had an appointment to see Dr. Nordli that following week.
The care and compassion we received at Lurie was amazing Within minutes of Joey meeting Dr Nordli he felt an instant connection.  Dr. Nordli treated Joey like a family member. The feeling was mutual and Joey began calling him "Dr.D".

When we greet Dr. Nordli and his staff it is always with a hug hello and good-bye.  In beginning I would call the staff at his office several times a month with various questions and each time I was treated like a member of the family rather than a patient. The care and compassion that the various teams within the hospital give our family is unbelievable!

My son had a total of three brain surgeries at Lurie: one brain surgery in July 2013 and two brain surgeries in June and July of 2014. 

Joey has been through more in this past seven years, than most people go through in a lifetime.Joey’s attitude and determination inspire me daily.  He takes everything in stride and always has a smile on his face and a positive attitude.
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I am forever grateful for the care and compassion my son receives at this CMNH. Thank you, SNC Dance Marathon Team from the bottom of my heart for your hard work!!!

Michaela Tisdale

     My name is Michaela Tisdale and I am a recent graduate from St. Norbert College. I was able to participate in Dance Marathon’s Miracle Day all four years. I owe even the ability to be at this event every year to the talented and knowledgeable professionals at not only Children’s Hospital of Wisconsin but Cincinnati Children’s Hospital.
   Due to developmental delays and challenges, I became a patient of CHW at a very young age. Then, at the age of five, I came down with pneumonia and empyema (infection in the chest cavity). This resulted in a chest tube and a nine-day hospital stay.
   At age 13, I developed a cough and breathing difficulties. After many doctors and doctors’ appointments, I was diagnosed with a rare disease called ISS – Idiopathic Subglottic Stenosis. This means that my windpipe closes down for unknown reasons. It is like breathing through a cocktail straw all the time.
   I have had approximately 28 surgeries, with two of them being major. I have had my windpipe reconstructed with part of my rib, which resulted in three months of normal breathing before the disease came back. My doctor then sent me to Cincinnati Children’s Hospital to see the “guru” of airways. That doctor treated me with many surgeries and medications before my windpipe would not stretch anymore. I would need to have part of my diseased trachea, and as it turns out,
and cricoid removed. It was an eight-hour surgery, which required numerous days in the PICU and living in Cincinnati for almost a month as a senior in high school.
Ever since the last major surgery, I have not had any dilations. Today, I have a new doctor at UW-Madison since my doctor in Cincinnati has retired. I was told at my latest appointment that I only have to see him if I feel that my trachea is closing again.
   There is no definitive cure for this disease because they do not know its cause. In the meantime, I will dance when I can and keep Children’s Hospital in my heart and prayers.

David Gelb

Our son – David Wayne Gelb – or Super Dave as he’s known by many ;) – was born December 27, 2010 at Froedtert/Children’s Hospital of Wisconsin in Milwaukee.  Prior to birth, David was diagnosed with a congenital heart defect known as transposition of the great arteries (technically Pulmonary Stenosis - Ventricular Septal Defect – dextro Transposition of the Great Arteries (or PS-VSD-dTGA)), as well as a cleft lip and palate (technically Unilateral (Left) Cleft Lip and Palate). 

We – Matt and Katie Gelb, and our 8-year old twin daughters Ella and Megan – feel so fortunate to have been blessed with such a wonderful gift from God in our little David!  He was initially diagnosed – if you can believe it – when his heart was only 2 cm big about 20 weeks into Katie’s pregnancy. We had the opportunity to spend the next four months or so being able to learn more about David’s diagnosis and prepare for his upcoming birth and medical needs. 
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Nearly five years later, those who meet our super hero David for the first time (and let us tell you – he’s not one to shy away from introducing himself to nearly everyone he meets) may not initially realize all he’s been through.  The scar on his chest from his two open heart surgeries (a Rastelli procedure to repair his transposition at five months and a recent replacement of the conduit from his Rastelli at four and a half months), a few smaller scars from his pair of septostimies, his cleft palate repair, and the scar under his right arm that runs from his arm pit to elbow – as well as the scars on the top and bottom of his forearm – are typically not visible to the public.  David’s new friends may be so enamored by his shiny and smiley personality that they miss his barely-visible cleft lip scar and the glint that comes from his bionic smile (13 stainless steel caps due to dental surgery one week prior to his most recent heart surgery.)