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12 Days of Giving
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If the walls of OSF HealthCare Children's Hospital of Illinois could talk, what would they say?

They would tell stories of four-year-old heroes and disease villains. They would start a slow clap for every staff member that, day after day, gives everything they have to make a difference. And above all else, they would spread the message that when WE all come together, the impossible is possible.

To see all of the 12 Days of Giving stories as they’re released, follow us on the Children’s Hospital of Illinois Facebook page.

 

12 Days of Giving

Harper

Patient

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On the outside, she looks like a healthy 6-year-old, but she has to fight hard every single day against the disease in her body.

-Shannon, mom

Harper is a fighter. She takes about 20 pills a day and does 2 treatments with her shake vest and nebulizer to manage her cystic fibrosis. She hates doing treatments. It’s hard sometimes not to think the worst, but a cystic fibrosis diagnosis today isn’t the same as it was 20 years ago. I still remember a doctor at Children’s Hospital telling us she believed there would be a cure in Harper’s lifetime. We have hope that she can live a full, happy life. We’ve been fortunate she hasn’t had many hospitalizations. But we also wonder if the other shoe will drop. The Cystic Fibrosis Center at Children’s has prepared us for that, though. They are like our family. She has an entire care team behind her helping us fight.

-Jason, dad

 

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12 Days of Giving

Brittany

Patient

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I found out I had pediatric cancer when I was 19 years old. I kept having problems with my sinuses and it turned out to be a large tumor. The surgeon told me it all had to come out. It scared me a lot because it meant my eye and my jaw would be taken out. I lost half of my face.

I went into remission for a while, but in 2014 I started to have a lot of trouble breathing. Every time I took a breath, I could feel something – it was lung cancer. I’ve been in and out of the hospital for 5 years now. Just when I think I’ve beat cancer, they find something new.

This year, the cancer spread to my hip, and I’ve gone into renal failure. I’m worried because I know what it means. I worry for my parents and best friend. I’m scared they will have to make end-of-life decisions. I don’t want them to have to do that.

Usually after a round of chemo, I get sent home to heal. But almost every time, I get so sick that I end up right back here. I’ve spent more time in the hospital than I have at home. That’s why having this hospital in Peoria is huge for someone like me. There’s a big difference between being in the car for 45 minutes versus 6 hours, especially when you are so physically sick.

This place has become my second home in a way. I love the nurses. We like the same things. I actually even went to high school with a few nurses on this floor. Because they are younger, it is easier to connect. They’re my friends, and it’s nice to have someone to talk to.

One of my favorite things to talk about is country music. Brantley Gilbert is my favorite. He’s my No. 1 always. Concerts make me feel alive. I love going. That’s where you can find me outside of the hospital. A country music concert.

The hardest part is trying to keep the faith and believing that it will get better. But my faith in Him is what keeps me going every day.

I have to believe that God has a plan, and He’s either going to make me better down here or He’s going to take me home so I can be with my grandpa. I’m OK either way. One way or another, I’m going to be with people that love me.

-Brittany, patient

 

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12 Days of Giving

Dee

Special Visitor Coordinator

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I still remember my first week here 28 years ago. I was just a teenager. I met this little girl named Britney. She had a lot of deformities. One day I was going by and I heard a cry. So I went in. She became my baby from then on. She couldn’t speak, so she communicated with me through moves and actions. She is the one who taught me to look at each person as an individual. You don’t know what a person has been through, what they struggle with, but each needs a little happiness and someone to watch over them. She’s stayed with me all these years.

I’m not saying I’m gospel all the time, but I believe in the power of my God. This is my mission. He put me here to make a difference. I love connecting with the patients and families. If you talk to anyone long enough, you find a connection. I don’t have a script because people can spot fake a mile away. I’m happy and loud, so I just walk in and be myself. Sometimes people ask me why I do this, why I come in on my days off. I do it for the kids. My philosophy has always been that if I can make one kid happy, then it is all worth it.

We do so much more than physically heal. We make the kids smile. We give them something to look forward to. You’ll find me popping into their rooms all day long, just being goofy and playing around. These patients are kids first, and whether they are sick or not, they should get to celebrate every milestone just like at home. So we throw birthday parties to make them feel special. If they lose a tooth, the Tooth Fairy visits. Every year, kids worry Santa will miss them. But they’ll wake up on Christmas morning to presents at the end of their beds. For that moment, they are like any other child.

If you spend a day in this hospital, you will see a miracle. But you’ll also experience terrible heartache. How do you comfort a parent who is losing their child? But I have to believe that everything has a time, a season and a reason. I can’t do this job without that belief. I spend a lot of time in our chapel. That helps. I also lean on my coworkers. They’ve become my family. We rely on each other when it becomes too much or we have a difficult case. We see a lot of abuse and neglect of kids, and that never gets easier. It’s hard not to be angry about it. But every day before I leave for work, I look at the quote, “I can do all things through Christ who strengthens me.”

-Dee, Special Visitors Coordinator

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12 Days of Giving

Katie

Mother

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Sometimes you beg God to give you an answer. You think that if you just know what you’re fighting, it will be better. And then you get it, and you beg Him to take it back. I’ve had a few of those moments with Lane. When I was told he had a severely abnormal MRI, and needed emergency brain surgery. When Dr. Lin called me and told me he had Williams Syndrome. Those two days will never leave me. Falling to my knees, crying and screaming no, hoping none of it was real. I’ve always been a Christian, but there were moments where I lost my faith. It felt like every ounce of what I had inside of me was gone. When you raise a terminally or chronically ill child, you lose so much of yourself. But as a mom, I couldn’t let myself fall apart. I had to fight because my son needed me. It’s easy to get lost in all the bad things, but you have to make a choice to put one foot in front of the other.

We’ve been in the hospital so much it feels like a second home. At one point, when Lane was 2 years old, we’d spent every single holiday he ever had in the hospital. There were times we were in isolation for months. We’d think he wouldn’t make it, and then he’d recover, but 2 months later we were back in. Now my friends are the nurses and doctors at this hospital because after a while no one else knows what to say to you anymore. But with the hospital staff I don’t have to explain anything. They get it. No one feels sorry for us, they just understand. On his 3rd birthday we were in the hospital and the nurses felt so bad we were there again. So they took his oxygen tube and connected as many as they could. They called maintenance and told them to disable the fire alarm in the stairwell for one minute. My mom and dad brought in a cupcake from the cafeteria. We all stood in the stairwell and let him blow out a candle. It wasn’t the birthday I had hoped for, but it worked.

Life with Lane has been full of every emotion you could have. I remember very early on. someone at the hospital telling me to enjoy the good days because the bad ones would be really bad. I didn’t understand the full weight of that then, but now I do. I want to cherish every day we have together because we can’t count on the future. We live each day hour by hour. We can’t plan anything because if he wakes up sick tomorrow. his compromised immunity means we will spend weeks in the hospital. It’s crazy and stressful, but I wouldn’t trade this life for anything. Life with Lane is special and unique and full of laughs and love. Children with Williams Syndrome are very happy. Lane doesn’t know a stranger. He can look at the ugliest thing and find the beauty in it. He has so much empathy for people. He brings the most genuine and innocent love to our lives.

I can never let Lane see how hard this is. I don’t want him to ever think he is the reason why I couldn’t have a certain job, or that we couldn’t take a vacation. I have to make sure that when the kids are looking, I am smiling and happy and thankful. And I am all of those things, but there are a lot of cracks too. Lane will sometimes say, mommy what’s wrong. And I always say, just a bad day buddy, but not a bad life. He’s my angel on Earth. It’s like he can sense when I need a pick me up. When I am at my lowest, he’ll randomly come over and give me a hug and say, I love you momma, thank for always taking such good care of me. And you realize how incredibly special he is.

The hardest part is knowing what is to come. We don’t know how much time we have. Children with Williams Syndrome have no elastin in their bodies. So life is all about maintenance, to sustain the best quality of life possible. The artery that runs from his heart to his kidney is our big problem right now. His heart is doing well, but his kidney condition is on the brink. If they deteriorate, there isn’t anything we can do. People will say, oh he should have a kidney transplant. But he can’t. Our bodies have elastin; his doesn’t. So it will reject the organ. We just found out that his kidneys can no longer process soda. It might sound small, but it was a big deal to Lane. It was his special treat and now it is one more thing that is gone, that we have to change.

Tucker is a great big brother to Lane. Sometimes I don’t know how he turned out such a great kid because he saw so much sadness early on. They are very close in age, so Tucker doesn’t have a memory without him. They have a bond unlike anything you’ve seen. He is very protective of Lane. Tucker is a type-A personality, a perfectionist. Lane loosens him up, makes him not so serious. But, it is also a lot for Tucker to handle sometimes. People with Williams Syndrome don’t have a filter. They say whatever they think. You can imagine that for an 11-year-old boy, he’s had many mortifying moments. My big worry is that Tucker is a little too grown up. He takes on so much responsibility. He feels fatherly towards Lane. But, that worry is also my peace of mind. If I wasn’t here or down the road, I know Tucker will always take care of his brother. Even now, whenever Lane is in the hospital, Tucker calls him every day during lunch to check in on him.

-Katie, mom

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12 Days of Giving

Danielle

Charge Nurse

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As the charge nurse, I am responsible for a lot of things that happen behind the scenes. I am the communicator between the units, help facilitate discharges/transfers, do all the staffing, escalate concerns to management and follow up with any issues that patients, parents or staff may have.

I have to look at the bigger picture and make plans in advance because you never know how your day will go. I have learned it is better to be prepared because it allows you to stay one step ahead. We have a diverse patient population which can be challenging. One child may have a time sensitive medication such as chemotherapy at the same time a patient is having breathing difficulties in the next room. Our nurses are always juggling priorities throughout the day, which make them so good.

I love the adrenaline rush. I’m never bored. From the very first day I spent on the Pediatric Intermediate Care Unit in nursing school, I knew it was for me. We deal with a lot of tough diagnoses and really sick patients. No matter how sick they are, they always want to play though. It makes my work never really feel like work, and I love that.

I do miss being a bedside nurse. I like to be on the floor providing direct care so that I can stay sharp and on top of new techniques. It also reminds me to appreciate the bedside nurses and everything they do.

-Danielle, charge nurse

 

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12 Days of Giving

Brandon

Patient

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I was in PE running around those cones they always line up and I tripped over another kid’s foot. I landed wrong. My right foot actually touched my chest. I didn’t feel anything at first, but then I looked down and my knee cap was over to the right and I started screaming. That was 3 months ago. As a kid you think you are invincible. But then something like this happens and it shatters you. My friends and I used to do stupid stuff all the time. But now, I know I could get hurt. It makes me think twice, even though this was just a freak accident.

-Brandon, 15

He’s gotten hurt in PE before, so I didn’t think it was a big deal when the school called. Even after they took him by ambulance and we were in the ER, I didn’t realize. The doctor said he had dislocated his knee. It sounded minor to me. But so quickly everything changed. After they popped the knee back into place, they noticed he was bleeding inside the leg. His foot was turning blue and they couldn’t find a pulse on it. The dislocation ruptured the popliteal artery, and when they popped it back in place, the artery pinched and cut off blood flow. They had to life flight him to Children’s Hospital from Bloomington. I remember the staff looking at me and saying we had a four-hour window to get blood flowing. They were worried he would lose his foot or part of his leg. I just remember saying, he is 15, and he needs his foot.

-Jennifer, mom

They put him on blood thinners hoping to avoid surgery. But because of the trauma to his leg, he developed compartment syndrome. I hadn’t heard of it before, but it’s very serious. There was so much pressure built up in the muscle compartments in his leg that they were in danger of bursting. He was rushed into emergency surgery. They had to open his leg up from ankle to knee to relieve the pressure, and also fix the artery that was damaged. It was all such a shock. One day your son trips in PE, and within a matter of days, you have to deal with him being airlifted, major surgery and talk of amputation. We honestly thought we would be home in a few weeks, you know. We’ll have the surgery, repair the artery and we’ll be good. But the compartment syndrome has kept us here.

-Jennifer, mom

There is a lot of free time in the hospital. I’ve watched just about everything on Netflix and YouTube. I started building Lego sets. I even started making 3D geometric shapes out of tape. I got pretty good. The nurses have also helped. They don’t just come in and order you to take your medicine and stuff. They’re really nice. I’m older than a lot of the kids here, so they joke around with me a lot.  I’ve played a few pranks on them too. One time, I hid silly string and when one of my favorite nurses turned her back, I sprayed her. We both laughed really hard. Another time I hid fake finger snakes under my sheet, and when the nurse got close, I threw the snakes up. She wanted me to do it again and scare another nurse.

-Brandon, 15

We try to make the best of it. We laugh and joke around a lot. But it gets frustrating. You might take 3 steps in the right direction, but you look up and realize you have 75 more to go. I’m still trying to find a balance between being here with him and at home with his younger brother and sister. It’s a 45 minute drive from our home in Bloomington. Some days I only stay 4 hours and am driving an hour and half. I feel guilty if I’m not here, but then when I am here I feel guilty I’m not at home. The injury happened September 1. I thought we’d be home by Halloween, but that came and went. Then I thought Thanksgiving, but we aren’t sure. Now we are planning for Christmas. We’ve both looked at each other and said, no excuses, we have to be home by then.

-Jennifer, mom

The hardest part of being here is that I can’t be home. Yeah, the pain and the physical therapy hurt, but I can’t see my family whenever I want. I don’t get to be in my room or have the same lifestyle. I really miss my dogs. I grew up with them and it’s hard not to have them. I’m also the oldest, so I like to make sure that my younger brother and sister are okay and nothing is happening to them. I can’t do that here. I’m not that worried about going home. I think it will be better because I am familiar with everything. My mom worries more. I know I will have to get used to a whole new normal and I’ll have a lot of appointments, but at least I will be home.

-Brandon, 15

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12 Days of Giving

Dr. Hanson

Hospitalist

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As a medical student, you try everything. But when I got to the end, pediatrics really stood out. Each age is different and unique. We see a broad spectrum of life and each has its own rewards. One day, it’s a baby that’s adorable and sweet, and the next day it’s a teenager that I can joke with. One of my favorite parts of this job is getting to interact with the kids and families. When I walk into a room, I want them to see I care about their child beyond the illness. We also get to have fun. That might sound strange because they are sick, but they are still kids. We have toys, special visitors in superhero costumes, celebrities. It’s important to make them smile, so we do it all.

I’m a hospitalist. So my whole job is caring for complicated hospitalized patients. My best days are when I send patients home and they feel better. But, I also have really tough days. Mentally, I take these kids home with me. If a patient is getting sicker or really in trouble, I log in all night to check on them. For me, I can’t just turn it off. It also impacts how I am with my own family. I hug them harder when I get home and I have more patience about the little things.

The other day I was out with my family at a community event and I saw a former patient. She was laughing and running around. I couldn’t stop smiling. That is the biggest reward for me. I see these kids at the store or the children’s museum having happy kid moments outside of the hospital. That’s why I do this. That’s how I get through the hard days.

Pediatrics is not a money making enterprise by any stretch of the imagination. A lot of our patients are on Medicaid. I also don’t think people realize how underfunded pediatric programs and research are in our country. Children don’t have an advocacy group. They don’t vote; there’s no AARP for children. They don’t always have a voice. That’s why fundraising is so important. We don’t turn people away here. We see every walk of life. Things many of us take for granted are burdens. Families don’t have enough money to fill their cars with gas or buy bus tickets home when they are discharged. It seems like every week we’re trying to solve those kinds of issues, too. Recently I bought a child’s prescription at CVS because his family couldn’t afford it and I couldn’t let him go home without it. Those are the day in, day out things no one sees.

-Dr. Hanson

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12 Days of Giving

Whitney & Dustin

Parents

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Sometimes I block memories…not all of them are good. Numerous times we’ve been told Reid had less than 24 hours. Each time she’s made it, though. The most important thing to us is that she isn’t suffering. She’s the toughest little girl I have ever met.

-Whitney, mom

We never expected we would be doing all this. Our 2-year old daughter, Reid, has Alpers syndrome. We were here for 9 months last year. This is the best hospital for her. We love the care and nurses, but it is tough. We live outside Geneseo. I was driving an hour and half to work in the mornings just to be able to spend nights with my girls.

-Dustin, dad

 

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12 Days of Giving

Harlan

Patient

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We met on a blind date almost 4 years ago. He likes to joke that he had an escape plan. He suggested appetizers and drinks at a local restaurant, and then if it didn’t go well he could slip out without committing to dinner. We ended up closing the place down and talking all night. The rest, as they say, is history.

He’s a huge Packers fan, so when I found out I was pregnant, I wrapped up this little Packers bib to tell him. We were excited and nervous like all first-time parents. I had a really rough pregnancy, though. Because of all my complications, we had a maternal fetal appointment at 17 weeks. We went in just expecting to find out if it was a boy or a girl.

Hearing the words that something was wrong with our baby was heartbreaking. Our little boy, as we found out, was diagnosed with congenital diaphragmatic hernia, or CDH. I just started bawling. Matt and my mom didn’t understand what it meant. CDH isn’t super common but it isn’t super rare, either. I’m a pediatric nurse here at Children’s Hospital, so I’ve treated kids with it before. I tried to keep myself together so I could prepare them for what it meant. Basically, our son’s diaphragm had a hole in it, so his abdominal organs were in his chest cavity. His lungs wouldn’t be able to grow because everything was on top of them.

-Sam, mother

It was a somber moment. We didn’t say much. We had a gender reveal party planned. I remember driving home wondering if we should cancel it. The rest of that night was spent researching. What is CDH, how long do babies stay in the ICU, what do we expect. I wanted to know all the stats. I was trying to prepare myself. I found out survival rate was just 50% at birth, and if he ended up on the ECMO machine, it went down to 30%. For Sam, it was different. She saw pros and cons with the numbers. As a nurse, she relied on them, but as a mom, everything was taken with a grain of salt.

-Matt, father

The day Harlan was born, I was excited and scared. I had carried him safe for 9 months, and I knew when he came out, it was going to be hard for him, that he would experience pain. When I saw him for the first time it was awesome, to realize you created that, that we had a son. It was overwhelming. Harlan had surgery at 5 days old. His liver, intestines and stomach were on top of his lungs. Since then, it’s become a waiting game. We try to do everything we can to get him strong, to grow his lungs, to make sure he has enough oxygen. This journey is so hard and upsetting sometimes, but I know that God will get Harlan through. It’s tough because one day we can make great progress, and the next, we take two steps back. In his first month of life, he’s already survived 3 surgeries, being on the ECMO machine, 5 different feeding tubes and 5 breathing tubes. I know we aren’t out of the woods yet, but we have faith.

-Sam, mother

We can’t look at the big picture. You see all these bags, machines, drips—everything, and it can wear you down. So instead, we think about the little steps. After he got off ECMO, we had to get him stabilized in the NICU, then we needed to wean his oxygen and so on and so on. All these little steps get us to our big goal of going home. We know Harlan’s challenges don’t end when we walk out the doors here. But we’ve chosen to enjoy the little things in life. I lost my mom 3½ years ago, and now going through all this with him, I know that life is precious and about enjoying our time together and having good experiences. We have a whole new perspective. Nothing will ever be taken for granted with him, not even one smile.

-Matt, father

This hospital saved Harlan’s life. He wouldn’t be here without them. When your child is sick and fighting for his life, it is the worst thing you ever have to go through. I’ve always been proud to work here, to be a part of this, but now it has new meaning. When you take care of kids, you take care of the whole family. I have so much more empathy for what they go through on a day-to-day basis. The lows are so hard. Being able to relate to them and help them through it will make me a better nurse.

-Sam, mother

 

 

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12 Days of Giving

Deb

Librarian

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In our hospital, families get bad news every day. They are facing new diagnoses or conditions. We never want them to Google first because they won’t always find accurate information and often times they just see the bad. This Family Resource Center is a place right here at the hospital where they can get the information they need. I have books on so many things. I pull research from consumer health information databases and patient education guides for families. I also have entire shelves full of supportive materials. Maybe you need to explain something difficult to a sibling or to a child that is a patient. We have books in here that help you do that. I also keep fun children’s books and coloring pages and crayons so that kids visiting can have a moment away if needed.

People often come through my door during the most difficult and painful time in their lives. Usually, their child is in the hospital. Sometimes they just need to use the computers to do something quick for work, check email or figure out something with insurance. But, often they are looking for a distraction. They might have been here for months and just need a temporary break from all the heavy things going on. Reading is great therapy. So, I put together an entire collection of adult books that they can choose from. I’m not sure why, but people usually want a mystery or romance. I might not be able to do anything medically for them, but I can provide an escape. As they browse the books, many of them start to open up. They are looking for someone to listen. People often feel like they have to edit themselves with family and friends. But with me, they have a safe place to cry or let it all out. I’ve become a confidant for many people during their tragedies. It can be difficult, but it is also the most rewarding part of my job to be able to give them some peace.

-Deb, librarian

 

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12 Days of Giving

Nicole

Mother

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It was very difficult for my husband John and I to get pregnant, but we wanted it more than anything. It was the piece missing from our lives. When we found out we were pregnant with twins, it was the greatest day of our lives up to that point. He was scared to death at the prospect of having two, but we were excited. At my 19 week appointment, John couldn’t be there. So my mom came and we kept him on speaker phone so he could find out what we were having. We saw our little girl first and then our boy. We cried happy tears. To have one of each seemed beyond perfect. And then the doctor came in and our world fell apart. Our little girl was already head down and ready to come out. They immediately put me in a wheelchair and took me to the antepartum floor to be on bed rest. We were devastated because we knew it was too early. The first few days, all I could think was that I was going to lose them. I couldn’t fathom it. We’d wanted this so badly. But as it sunk in, my stubbornness came out. I knew I could do it. Our goal was to get to 24 weeks, but our hope was 28. We had an amazing doctor during that time. She gave it to us straight, which is what we needed. We were so out of our element. Everything was so new and daunting.

I was 23 weeks and 4 days. Things seemed to be okay. But when I got up to use the bathroom, I was bleeding. I yelled for my mom in the hallway. It was immediate chaos. I’d heard magnesium horror stories, but we had no choice. We had to stop my preterm labor. I was sobbing the entire time. I still wasn’t 24 weeks, the point of viability. The chances of survival were very low. They gave my husband and family a sheet with statistics. I have never looked at it. It had survival rates and complications that happen. Those next few days were devastating. Hour by hour, we didn’t know what would happen. I reached 24 weeks on a Sunday. One of my favorite nurses, Sue, came in and washed my hair and painted my nails. She was a true blessing. She helped me so much. And then on Monday, surrounded by what seemed like a million people, our little Madelyn entered the world. I remember seeing her. She was 1lb 7oz. She looked like a baby, but also not. We didn’t know anyone who had even used the Children’s Hospital, let alone a baby this early. They immediately intubated Madelyn and took her to the NICU. Then they cranked up my magnesium and I was out again.

The next few days are gone for me. I woke up on Thursday and a friend was sitting next to my bed praying. My back immediately started hurting. I was in labor again. Our little boy had turned around the wrong way. I was wheeled in for a C-section. It was more violent than I thought it would be, but they got our Jake out. John left right away to go with him as he was rushed to the NICU. The doctor stayed with me. I was terrified. There was so much rushing and running. After some time had gone by, I remember them wheeling my bed through the hallways to see him. My whole family was there sobbing. He almost died that day.

I had never seen babies that small before. I had no idea what I was walking into with the NICU. I didn’t know what the machines meant, what the tubes were doing, what was next. The staff didn’t overwhelm me at first. They just wanted me to be a mom. I didn’t dare ask to hold them because I was scared to. I didn’t even think it was an option. Jake was 7 days old when I first held him. I have this amazing picture of him laying on me for 2 hours. And like magic, his stats got better. It was the first time I felt like I was doing something as a mom. We craved anything that was normal like that. We cherished those firsts because we didn’t know if we would have any more. I would spend all day at the hospital and go home to sleep. The first week was just learning bits and pieces. A new word, a new medication, a new scar, a new diagnosis for us to learn and face. It turned into a bit of a blur. If the hospital called and it was the middle of the night, we were immediately there. Madelyn was our slow and steady. She took forever to get the next step, but she continued to improve. I remember Dr. Hocker looking at her and saying how amazing she was. Jake had all the stuff preemies deal with. His first week was the honeymoon period, as they call it. But he had stomach issues and had a blood transfusion early on. He also developed brain bleeds. It was grade 4 on both sides, the worst it can be. There was no positive info out there for that diagnosis. The statistics were horrible. His head started getting bigger because his cerebral fluid wasn’t draining. One specialist talked about putting in a shunt. I remember throwing up in the bathroom afterwards. Later, Dr. Hocker came in and told us that things were starting to shut down and there wasn’t anything we could do. He cried with us that day because he couldn’t fix it.

The next day was Father’s Day. John hadn’t held either of them yet. They placed Jake in his arms. He wanted to hold him before anything. We hoped it wasn’t the only time, but things just kept getting worse. Jake was 23 days old when he died in my arms.

Our nurse, Theresa, was a God send to us that day. No one could have done more to make that day less painful. When John was holding Jake she cranked everything up so he was comfortable. She let us give him a bath and then stay with him as long as we wanted before going home. She took pictures of him after we left for us. Theresa told me she would take care of Madelyn if we needed a day or two. As I left Jake’s room she hugged me. She reminded me that I was still a mom and had a little girl that needed me to help her fight. She said go home and sleep, but that I still had work to do. From that day forward, Theresa always cared for Madelyn when she was on shift. She became part of our family forever.

After Jake, everything became a bit more high emotion with Madelyn. There was no way I was losing her too. I wanted to be involved in everything. The next month, I had to be forced to go home and rest. I was terrified. Dr. Javed was a blessing to us when he came on rotation. He had a different approach with her and it worked. We started having a lot of firsts. First bottle, first time my parents could hold their grandchild. She was 10 weeks old when we gave her a bath for the first time. Some moms might not remember that, but we have an entire photo album. It was so normal and fun.

After we lost Jake, I worried that the some people might not want to take care of the family whose child died. But the staff was amazing. They checked in on us in different ways and always encouraged. They took care of our whole family just as much as they took take of Jake and Madelyn. They took every call from me in the middle of the night asking for an update. They told me congratulations when I had my babies, even when no one else did. We didn’t have a bad experience with anyone. There is nothing I would change or ask for that could have been better. These people truly became our family and gave us the greatest care possible.

Being up here on the floor is healing for me. Some parents never want to set foot on this floor again and I get it. But this is the only place I had Jake. My only memories are here. So yes, it is heartbreaking, but it also heals me. When we got out of the NICU it wasn’t even a month before I was looking for ways to get involved, to give back, to help other parents. This place is so personal to me because I have a miracle in my life and I also lost a child. I know how hard and painful it is and if I can help even just one family, have one better day, then I will do it. One Sunday every month, the NICU family advisory board provides a family dinner to the floor. We meet with parents living this right now. I remember when we were here I could never picture Madelyn as a normal little girl. I always saw the tubes and machines. I would have done anything to be able to picture it. So when Madelyn was two, I started bringing her with me. The first time I did, a family with twins born at 28 weeks cried. Madelyn was eating crackers and throwing a fit like any other two-year old. I saw them breathe a sigh of relief. They needed the same thing I did. That is why I do this.

I love everything about Madelyn. Her smile can light up an entire room. She’s four years old now and continues to amaze me. She defied every odd in front of her and always will. I love experiencing all the new things with her. Everything is a wonder. She immediately loves new places and experiences and doing those things with her makes me happy. That is why I became a mom. Riding a bike took a lot for her, but the day she found out how to work the pedals and get down the street, she was screaming that she was doing it. In our house we never say can’t, because she can do anything. I’ve seen it.

-Nicole, mom

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12 Days of Giving

Chris

Flight Nurse

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When I was 20, a friend of mine had a heart transplant. I remember sitting out by the landing pad, watching the helicopter come down and the flight nurse carrying the heart off and thinking, I want to be one of them. Doing this is my dream job. How many people get to say they provide medical care in the back of a helicopter? It’s exhilarating. But it’s also incredibly hard because we see people on their worst days. Recently, I did a follow-up on a young woman we brought in who had extensive injuries from a car accident. We weren’t sure if she would make it. Her mother hugged me. She was so grateful. She told me her daughter was alive because of us. I mean, how does it get better than that? Those moments are why I do this.

One of the best parts of this job is the people I work with. You have to be a certain kind of person to want to do this. I look up to the other flight nurses. We all come from different backgrounds, so we’re always learning. At the start of every shift, we talk about our stressors; how much rest we got, if we are sick, even personal issues at home. It might sound weird, but our lives and our patients depend on us being 100%. I never could have imagined how tight knit of a group this is. But, we have become family. We laugh together; we cry together and we hold each other up. A win for one is a win for all. When you have the stress and danger of this job and see the things we do, you have to find ways to cope. We are kind of a crazy group. We love to have fun and joke around. We have a really warped sense of humor, but it helps us deal and keep things light.

My kids joke that when I come home, I always say, you can never do this or that again. You don’t want it to, but this line of work changes your perspective. Especially when it comes to transporting pediatric patients. It’s hard not to look at them and see your own kids. Having to look parents in the eye and say, trust me, is one of the hardest things, because I know how I would feel as a mom. Nothing is easy when it comes to kids. From the smallest preemie babies to respiratory and neurological issues. If they are awake, they are so sad because they are hurting. They are frightened too, especially if it was an accident, they might be worried for mom and dad as well. We do our best to not only take care of them medically, but emotionally. We try to always call their parents when we land so that they can have some peace of mind.

I don’t think most people know what it takes to get us in the air. There are a million moving pieces. Our first priority is safety. We hold ourselves to the highest standards imaginable because we aren’t interested in being just any medical flight transport, we want to be the absolute best. Each of us truly feels called to do this work and make a difference for the patients. This isn’t a one person operation. To do my job, I have to rely on other people. You should see our mechanics. They could take the helicopter apart and put it back together again no problem. Our flight communications team can figure out where we are going, even in rural areas without exact coordinates. And there is no one I would rather fly with than our pilots. I feel really proud to be on this team. Every single one of us helps save lives

-Chris, Flight Nurse

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12 Days of Giving

Laura

RN Case Manager

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I like working with children, but I really love working with the whole family. I like being able to get them home, to see them walk out the door and back to their normal lives. I work with a lot of Peds ICU, trach, oncology and cystic fibrosis patients. As a case manager, my job is to help these families navigate the diagnosis, the hospital stay, going home and everything in between. I always leave all my biases at the door. I learned very quickly you can never judge anyone until you’ve walked in their shoes. Someone might see a child alone in a hospital room and rush to judgment. But, I know that the family lives 45 minutes away, and mom is working day and night just to keep the utilities on and can’t afford to miss a day.

No matter the circumstances, it can be very overwhelming for any family to be here. I check in with them twice a week. If they need a note for work, I get it; if they need resources, I help. It’s also common to get “hospital brain” where parents forget things they need to know. Some doctors talk fast and move quickly. I help them recap some of those important meetings, and even pull the docs back in and let them know these parents didn’t understand what was just said. If our patients didn’t have case managers, a lot would slip through the cracks. Right when a child is admitted, I’ve already started planning and working through the details of discharge items that I know might present a problem, whether it be with insurance, resources or anything else. Today I have 11 or 12 kids on 3 floors, but during our busiest time I can have 30 different kids that I am managing.

There are some amazing days here. Even just getting to send a family home ahead of schedule, and the fact that they can now watch the Cubs game at home, that means something. But, the bad days are pretty dark. In the last few months, we’ve had to bring in Gift of Hope for organ donation a few times. Those aren’t things you ever want to talk to parents about. I have a gym bag packed in my car at all times. Sometimes, I just need to get away for an hour and physically work through everything in my mind. My teammates help too. We take turns handling difficult cases. We have outings as a group so that we can connect outside of work. We go to dinner and talk. There is a lot of responsibility that comes with this job, but I wouldn’t want to be doing anything else.

-Laura, RN case manager

I just had to run over and give her a hug. We’re going home today after two and half months, and she knows how big of a deal that is for us. I’ve known Laura since the first time we came here. She’s amazing. My 17-year old son has complex medical issues. She is always there for us no matter what. She shares in our ups and downs and everything in between.

-Patti, patient mother

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12 Days of Giving

Kelly

President

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We recently had a family who lived over an hour away. Their child needed the resources at our hospital but because of circumstances they couldn’t get here regularly. We sent an email out asking employees if they could help. Almost immediately we had 7 people respond with how they could help the family.

That’s why I’m passionate about this place. We have amazing programs and specialists who I could brag about all day, but it’s so much more than that. Every person here cares. These patients become our family. We cry with them, laugh, pray and help in any way we can. I firmly believe each of us were called here to serve and provide the greatest care and love to these patients and families.

-Kelly Nierstedt, president, OSF HealthCare Children’s Hospital of Illinois

 

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12 Days of Giving

Champain

Patient

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There has been a lot of sad days and a lot of bad days. We pray a lot. When they told us our daughter had cancer, I was scared. It is a lot to handle, but her life is more important than anything else. I don’t think we realized all the emotional changes and side effects of the chemotherapy and medicines. There were times she didn’t remember things. She hallucinated a lot. It was horrible. She would say she just wanted to be back in the hospital and that was heartbreaking to hear. She’s just now getting back to herself, but she still takes between 12 and 13 medicines a day. I’m proud of her though, she’s been really strong.

-Tamika, mom

The hardest part at first was the physical changes. The first time I took my ponytail out and hair fell to the ground, I cried. My nails turned black and I didn’t have an appetite. All the chemo and steroids I was taking made my hips collapse, so I was in a wheelchair. I had to have both replaced. But I healed fast so I can walk again. I was in 9th grade when I was diagnosed. I’m supposed to be a senior now, but I’m a junior. With everything going on I fell behind in school. I can’t get as much work done as I used to. Every time they do a spinal tap, they shoot chemo up your spine to your brain and it sits there for awhile, and those effects last a long time. It’s been hard for me to remember stuff and to focus. I used to love to read and now it’s hard for me to do it. A lot of people don’t understand that.

-Champain, patient

Cancer is the worst of the worst. One day you are in a restaurant eating as a family and the next, Champain’s diagnosed. Just like that, everything changed. It’s been a struggle, you know. I’m always telling her to be strong. She’s very smart, always has been. I’m most proud of her for going through all of this and not jumping off the roof because I know there has been a lot of days where she wanted to. We dealt with it and prayed on it. God’s got us through so far.

-Demetrius, dad

Most of my life, I‘ve been bullied and suffered from depression—and for me, cancer has been a thing that brought me closer to people. I love the nurses at the hospital. They are my friends. I have social anxiety and don’t always have good interactions with people, but the nurses make me feel good about myself. They even stay in my room with me when I am in isolation to keep me company. It’s hard to stay positive though, especially when I was already going through bullying and had a lot on my plate. I’ve had a lot of bad thoughts, and still have them. One thing that calms me down is color. I love looking at colors. My counselor at the hospital gave me beautiful pen markers to use when I get stressed. They’ve helped.

-Champain, patient

My brother Orlando has been amazing. I can talk to him about anything and everything. He’s been through it all with me. I can’t talk to everybody without them saying what they think. Sometimes you just need someone to listen and Orlando does that. He doesn’t call me crazy. He doesn’t tell me not to say certain things. It means a lot to me. He helps keep me positive. When I started losing my hair, he cut his off too. We made a bet on whose would grow back faster…mine did.

-Champain, patient

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12 Days of Giving

Khloe

Patient

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It was just like any other day. We were at an uncle’s house for a cookout for Mother’s Day. Our twin girls, Khloe and Zoey, were having fun and left on an ATV with friends. I got a call shortly after that there had been an accident down the road. My brother and I hopped in the car. When we pulled up, I saw Khloe laying in the ditch and Zoey holding her sister’s neck straight, keeping her airway open. I used to be an EMT, so I’d always told the girls what to do if they came upon an accident. My brother said I let out a horrible scream. I honestly thought Khloe was dead. I saw her lying there and I thought she was gone. I was afraid to get closer. But, I also knew I was the only one who could help her if she was alive. Zoey was in shock and hurt herself. I sent her away so she wouldn’t see everything. I did a sternal rub on Khloe and she responded, so I started assessing her injuries. I knew she had a traumatic brain injury because there was spinal fluid coming out of her eyes, nose and ears. I also found broken bones in her face and she was bleeding. I knew it was bad. Life flight was called in and Khloe was flown to Children’s Hospital. I made the difficult decision to go with Zoey in an ambulance to another hospital. I just kept thinking I needed to be there for her. I didn’t know if Khloe was going to live. I had to make sure one of girls was okay. My husband drove to Peoria to be with Khloe.

-Jamy, mom

It was hard to have the twins separated at different hospitals. My husband and I didn’t know how the other was doing. There was so much worry and fear. Zoey had severe road rash on her body, her front teeth were knocked out and she had a small brain bleed. But thank God, she was okay. Once I knew she didn’t have life threatening injuries, I raced to Peoria. I hated to leave her, but I had to get to Khloe. When my husband got to Children’s Hospital, they put him in a small waiting room. A priest came in and told him they were preparing her for surgery. They prayed together and then they brought Khloe by for him to see her one last time. It was the hardest thing he’s ever had to do. He told her he loved her and that we would be right here for her. They told us they were doing their best, but they didn’t want to give us false hope. It was the longest hours of our lives.

When we saw Khloe again, it was a shock. We knew it was her, but it didn’t look like her because she was so swollen and they’d shaved her head. They had to remove half of her skull because her brain had swelled so much. The negative thoughts were all there, but I had to push them out of my mind. For days, it was just a waiting game.

-Jamy, mom

I feel like I’ve missed some important things that I can’t get back. I didn’t get to go on my 8th grade class trip or graduate with my sister. I was sad. I didn’t get to have a summer. We were in the hospital the whole time. I didn’t even get to light sparklers for the 4th of July. We just sat in the hospital. And even when we got home, we had to be very careful. Not seeing my cat, Mochi, was the hardest part I think. I didn’t cry once, until I saw my kitty again. I guess I was trying to be stoic. I also couldn’t process all of it. I don’t remember a lot, so hearing everyone talk about it is weird.

Since my traumatic-brain injury, I have some trouble with my short-term memory. My taste and sense of smell also changed. I used to have long red hair, but they had to shave it all off. Now, I don’t want to look at myself or what I used to look like in pictures. I don’t think I’m beautiful anymore. Sometimes I still think my hair is there, and I go to fix it or run my hands through it, and there is nothing. But I can’t change it now, so I’ve just accepted it.

-Khloe, patient

My sister is my best friend. We’ve done everything together since the day we were born. I’ve always felt like her protector. I’m always telling her not to do something, or holding on to her, making sure she doesn’t fall. The first time Khloe ever responded after surgery was to my voice. I wasn’t there yet, so my mom held up the phone and told me to talk to her. I said, “Khloe you are going to be okay.” Khloe immediately tried to sit up and reach for me. Even though I was hurt too, I couldn’t wait to be by Khloe’s side. We’ve never been apart more than 3 days.

I don’t think I’ll ever be able to forget that day. When you see your best friend, your twin sister, laying in a ditch like that, it ruins your whole life. It haunts me. I’m not sure how to deal with it. Some people want to talk about it, but I don’t want to. I just want to move on.

-Zoey, twin sister

I’m thankful every day that she was brought to Children’s Hospital. Their team of neurosurgeons saved her. They were so amazing throughout everything we had to deal with. As Khloe got better, the nurses would sit and talk with her, just to get to know her better. They took care of Zoey too, even though she wasn’t their patient. As a mom, it meant the world that the people caring for my daughter and family weren’t just there to do a job, they cared about us. The hospital also let me be a part of her care. Everyone here included me in her medical decisions. They listened when I had opinions and answered every question I had.

It’s been almost 7 months since the accident. It’s been a long road full of moments of hope and setbacks all mixed together. Khloe just had her last surgery on Nov. 1. We hope we can move on now. As a family we feel closer than ever. My husband and I make sure we tell our girls how much we love them because you never know what tomorrow will bring. We’ve learned that life can change in the blink of an eye.

I know Khloe and Zoey just want to put it behind them and live their lives. But it’s hard. As a mom I can’t stop reliving everything. Especially the day of the accident. There are things you shouldn’t ever have to do or see as a parent. But I had no choice. I don’t think anyone can fully understand. This past year, I’ve tried to make the most of every moment. Everything feels extra special now.

-Jamy, mom

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12 Days of Giving

Jeanette

Respiratory Therapist

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The hardest part of my job is knowing there isn’t a cure for some of the diseases I treat. They will progress. But on the other hand, we are seeing less complications, longer life spans and better quality of life. Every day we make strides. I’ve been here almost 38 years. So much has changed in how we treat our kids. Now we look at the big picture, like how aerobic activity and nutrition make an impact. Our specialty clinics are keeping a lot kids out of the hospital. My patients are so appreciative of the work we are doing, and that brings me incredible joy. This place and these patients are my heart.

-Jeanette, respiratory therapist

 

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12 Days of Giving

John

Concierge

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My faith is really important to me. I’m Catholic and I—I know that God is present here. He’s doing miraculous things back there. I believe in His plan. That doesn’t mean it gets any easier. I’ve found that I grieve along with the families. I think seeing the heartache is the hardest part.

Many of our families are here for days, weeks, even months. I work really hard to get to know them and the visitors that come in. I feel like I am part of the Sister’s Mission to provide the greatest care and love. With that, I have to be very observant in this position. All our floors are lock down units. We can’t have anyone back there who shouldn’t be. Everyone has to sign in with me. I have to enforce the rules, so that can be a challenge. One of the best compliments I ever received is that I run a tight ship.

I’m a retired Jr. High teacher, but I still needed and wanted to work after retirement. I started in the adult unit as a guest services concierge. I have been with Children’s for 2 ½ years now. I am on the 4th floor. Some people say I have a calming effect. I try to be someone who is positive. You know, for me that means smiling and treating everybody with love and care. I’m separated from the unit by the door and it could be an isolated position. But, I determined from the start that I was going to get to know the doctors, nurses, everyone. I worked hard to learn their names. I have a role to play here—a ministry I guess. It’s more than a job.

-John, 4th floor Concierge

 

 

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At times it will be hard to read, because childhood illness and disease is one of life's greatest injustices. But keep reading - because it is important that their voices are heard. As we learn these stories, we are trying to raise funds to help the team at OSF HealthCare Children’s Hospital of Illinois as they work tirelessly to help patients and their families.

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