My Nonprofit Reviews

While we focus each and every day on finding the joy and being grateful for all we have as we navigate this new part of our life- taking care of a critically ill child, the Starlight gown contest added a lot of fun, novelty, and joy to our lives. We met their amazing team, had incredible experiences, and most importantly felt so much pure joy and fulfillment in our hearts making a difference for other hospitalized children, because we know how much it means when someone brightens your day.

One February afternoon, I was waiting for Everly to wake up from one of her 28 minute naps and for Grandma to drop Jack off back home from school. I was flipping through the high risk clinic binder we were given a few days after she was born. In it contained a section entitled “support/resources for families” that I had never had time to really dig into. There were lists of websites. I typed Starlight Children’s Foundation in and up popped the gown contest. Because of Everly’s fragile state, we spent most of the winter months at home, finding ways to have fun around the house. Jack enjoys arts and crafts. This was the perfect activity for a cold, wintery Chicago weekend coming up. I was immediately drawn to the contest because it was win/win. Jack and I would have fun doing an art project together and some kid somewhere was going to get a gown donated from Michaels because of us designing and submitting a gown. We encouraged our family and friends, especially friends Jack’s age, and also people who followed my blog about Everly’s health to design and submit gowns because what an easy way to get a gown to a hospitalized kiddo somewhere, thanks to Michaels. We never imagined that Jack would be finalist, let alone the winner. But we couldn’t be prouder of all he’s done to raise not only awareness to people about bringing joy to hospitalized kids but also the prevalence of childhood illnesses, like CHD.

The first time we noticed a real need for a change in hospital gowns was a few months before Everly was born. Jack had just turned 5 and was having a tympanoplasty which is a skin graft in your ear to fix a hole that hadn’t closed from ear tubes when he was younger. Jack’s two big complaints were about the taste of the sleepy medicine and about the hospital gowns. He just could not get over how he couldn’t wear underwear and how his rear end was sticking out. Afterwards when people asked about his surgery, the majority of the time was spent talking about his extreme dislike for the gowns and how could his parents possibly make him wear that.

Fast forward to designing our Starlight gown… Jack and I just loved the fact that the gowns tied on the side instead of the back and wondered if some day Evie would get to wear a gown like that instead of the traditional tie in the back ones.

Fast forward again and Everly did in fact get to wear a Starlight gown and it was just as wonderful as we dreamed it would be. The bright colors and soft fabric made us feel like she looked more “normal.” It covered up the all the thick chest drain tubes and the bright red incision down her chest and all the millions of IVS and monitors. And for her, I’m sure she enjoyed how soft and comfortable it was. For us, we enjoyed how good it made her look. And don’t we all feel a little better when we look good? I know for me, when I’m living in the hospital, a shower and clean clothes makes me feel like a whole new person. Back to that comfort piece…. I used to be a teacher and I always joked that my best lessons and best student learning took place on Fridays because we got to wear jeans and jeans were more comfortable than dress clothes.

As she came out of the fog of the anesthesia later in the evening after surgery she was pretty grumpy. I asked our nurse if we could get her dressed because she doesn’t enjoy being naked. Plus hospital rooms are super cold. We put her in her gown and she immediately got a little better. And the benefit of the Starlight gown versus the traditional gown... the ties on the sides allowed her to lay comfortable on her back. Can you imagine laying flat in a traditional gown with knots down your spine?

This past surgery (her third open heart surgery before the age of one!) was a rough one. Probably our roughest yet. For a few reasons… 1- she was older and more aware. 2- she was doing so much more prior to surgery, she wasn’t just a little baby who laid around all day anymore like in previous surgeries. 3- although we had complications in all 3 heart surgeries, this one was the worst.

The day before we were gearing up to head home post open heart surgery, Everly was on a mat on the floor playing happily and babbling and interacting with our favorite nurses. We had gotten to go outside that day for the first time since before surgery and the whole team felt that really helped Ev’s spirits. At 4 pm, she was as happy as could be. By 6 pm, she had taken a turn for the worst. She was practically unresponsive and had very labored breathing. By this point since we were anticipating being discharged the next day, everything had been removed except one small peripheral IV. No more central lines. No more chest tubes. For days she was unresponsive, moaning, and just rolling back and forth. It took several days for the ultrasounds and echos and chest xrays and blood labs to show what was going on. Once it was determined what type of infection she had, it was the first time I didn’t feel completely confident that she would recover fully from this infection or that we would be bringing our baby back home. It was the first time all the specialists’ faces dropped and turned white- and these people have seen it all. Lots of discussion. Lots of meetings. New specialists brought in. and then back in when the thick chest tubes that were inserted between her ribs. In went an IV into her neck because all the other IV real estate had been used in the first surgery a few weeks prior. They tried to treat the infection with medications and the chest tube for drainage. Unfortunately, a week after she took a turn for the worst, the team determined surgery that would reopen her chest and wash out the infection was going to be the best and fastest way for her body to fight this infection and give her the best chance at recovery. Thankfully, our team is brilliant and that wash out surgery really did help, combined with a continuous flush and IV antibiotics. This infection sent us back home with a PICC line where I administered IV antibiotics daily and a nose feeding tube because she was too weak to eat on her own for weeks. But thankfully we were able to take our baby home. And that’s just CHD for you. Just when you think you are going down one road to home, the GPS reroutes and back into the operating room you go.

Having Everly wear Jack’s gown in the hospital was really great for our family. I always like to bring things that feel like home… our own blankets, our own socks, our own bottles. This personalized gown was an extra added touch. I spent a lot of days and sleepless nights in the hospital rooms alone with Everly. I couldn’t help but remember highlights of the gown competition and Cubs game while listening to the beeping of the monitors. While Everly is awake, I try to talk to her a lot. Sometimes I run out of things to say after so many days. It was nice to be able to talk to her about the hearts on her gown and who made them and why.

Jack thought it was super cool- phenomenal actually, he must’ve learned that word from You Tube Kids- to see his sister wearing the gown. He thought it was neat that everyone in the hospital knew him when he walked in. The doctors let him have some extra time and privileges in the ICU room with Everly than most siblings get because they knew how awesome and well behaved he was from all his tv appearances. Although we didn’t give him many opportunities to see all wires and tubes and monitors when visiting, his eyes would grow a little larger if he caught a glimpse of everything attached to her, so I think if we dug a little more, he would’ve told us the gown helped her condition to seem less scary. Quite frankly, she was scary enough for him to look at with the gown on. Her eyes were open but no one was home. She’d look right through you. All while moaning.

Jack also really enjoys seeing pics of other kids in the gown he designed. He’s had some tough questions about Everly’s heart. In fact, he even asked Santa for his number one present for Santa to fix her heart. Seeing other kiddos in his gown allowed us to talk about other families going through similar situations that we are.

This year hoping for less times we need to wear our Starlight gowns- less hospitalizations due to illness. And maybe, just maybe - fingers crossed- the next time she needs to wear one she’ll be in the next size.

We are so grateful for the Starlight crew and the nationwide community that has given us so much support. We’ve been blown away by all the msgs for Everly and all the votes for Jack.