Play is powerful and therapeutic. When children have the opportunity to play out familiar experiences, they gain control and build resiliency. The media has drawn some attention to commercial dolls and toys that also represent children with differences.
As a child life specialist, I love hearing how others are making a positive impact on a child’s life. I’m excited to share Everly’s story with you.
Guest Blogger, Lauren Backe
Our daughter, Everly, was born with a congenital heart defect. That means that her heart didn’t form in a way that would be able to sustain her out of utero. She had her first open-heart surgery, a category 5 mortality- the worst ranking there is, at just 3 days old. Her heart was the size of a walnut. With a total of 3 open-heart surgeries, 2 cardiac catheterization procedures, and 1 infection washout surgery that reopened her chest all before her first birthday. That means that although we’ve gotten almost a year “break” from surgeries, we know there are many, many, many more open-heart surgeries in her future because there is no cure for CHD, just a fix for an unknown time.
But today’s story doesn’t focus on her heart directly. During her first hospitalization, she had an IV that leaked out into her foot. This caused a HUGE, yellow, open wound on her foot for almost the entire first year of her life. There were lots of extra appointments, painful dressing changes, new specialists, new medications. This meant visiting the high-risk cardiology team located (on a good day) 1.75 hours from our house, then stopping at the pediatric plastic surgeon’s campus then driving home, every single week for months with a tiny newborn who was functioning with a half a heart and about 75% of the oxygen you and I do.
Although we’re grateful this was the biggest complication she had after this first (HUGE) open heart surgery, it was one more thing on a long list of things we had to keep an eye on when we brought our newborn home from the hospital. When she came home from the hospital, she wasn’t allowed to cry. We checked her oxygen levels and heart rates multiple times throughout the day. She was on a feeding pump with a feeding tube in her nose that ran every 3 hours, for a total of 8 hours of the day. She had a strict medication schedule with too many medications and doses daily to count.
While the most important thing to fix is her heart, as a mom I do wonder if the infiltration injury will impact her in other ways. What if her feet are never the same size? And what if she can’t splurge on a nice pair of shoes because she has to buy 2 pairs? What if she has a large scar and is embarrassed about getting a pedicure with friends? We’ll cross that bridge when we come to it—but for now, we’re happy that she’s alive because of the care she’s received. A scar is a small thing, comparatively, when her heart condition is literally life or death. We’ll work to find beauty and strength in the scars because they are a symbol of her will to fight.
Fast forward from the infiltrate almost 2 years… and Everly’s right foot is still larger than her left. There also appears to be some nerve and circulation issues as she doesn’t like to keep a shoe on that foot and bangs that foot repeatedly when walking or crawling. Everly’s team of specialists decided that we should try a compression sock. Let me tell you finding someone who could make a custom compression sock for a toddler was not easy! But we found someone, after lots of phone calls and emails and research.
A few weeks ago, we met with a CPed/LPed (Sheck and Siress) who measured Everly to have a custom sock made for her. She shared with someone at the company who was making the sock (Jobst) all about our little fashionista Everly and how I was worried she wasn’t going to keep the sock on or tolerate it well. At our first appointment, I asked if we had color options, etc. and she said she would ask but she thought it would just be a plain nude sock. And then I didn’t think much of it, except maybe I could get some patches to sew on it or something if she totally hated it.
I got a call two weeks ago that the sock was in. To be honest, I kinda dragged my feet about scheduling the appointment to go in and get them, It’s 50 minutes each way. And we had fun summer plans and nice weather in the days ahead. (Remember this is our first summer in 2 years without an open heart surgery scheduled… and Everly has finally been cleared to get out of the house and do stuff- she wasn’t allowed out of the house or able to be exposed to people- even close family and friends until recently to help keep her health). So I scheduled the appointment for Friday and purposefully planned a trip to a friend’s house after to take the sting off the stock I figured she’d be angry about.
Well, we walked into the appointment and the CPed/LPed surprised us with what the lady at Jobst created. Not only did she use PINK stitching…. She also attached butterfly patches and she went out and bought a baby doll with butterflies on her clothes and made Everly’s doll a sock that matches Everly’s.
I mean, can you even believe this?! Some stranger who doesn’t even know us thought of all of this and planned it all out. I was just truly blown away with the thoughtfulness and kindness.
We’ve been lucky enough to have and create the very best, most compassionate medical team for Everly. They love her like she is their own. I could write something about every single one of them. But what really blows me away about this, is that this lady at Jobst was a stranger. She doesn’t know us. She doesn’t know Everly. She hasn’t had the opportunity to spend time with Evie and fall in love with our little sweet and spicy firecracker.
Sometimes days feel hard and it’s hard to watch/hear what’s going on in the world in the news, but then something like this happens and you remember that there are a lot of really good people in the world. I wish we could hear more stories like this. About the good people in the world.
Please note: We are so incredibly grateful there is something that can be done to/for Everly’s heart. We are so grateful for all the doctors, nurses, clinicians, etc. who have dedicated their lives to working to find a cure for CHD and developing surgeries to help our children with CHD live longer lives. It is not lost on us that had Everly been born a few decades ago, we would not have even had these two beautiful years with her so far. Because of lots of hard work and research, her prognosis is to live into adulthood. And while taking care of Everly’s foot is/was hard work and she is not thrilled with wearing the compression sock, we remind ourselves of our family motto “We can do anything for a short time”. We remind ourselves how lucky we are for every single day and moment with her. Everly will be 2 in about a month and is thriving thanks to advances made in CHD care.
To read more about Everly, visit follow us on Facebook and Instagram. Check out our newly published book, Happily Everly After.
Lauren is a stay at home mom to her two children, Jack (7) and Everly (soon to be 2). Lauren is a former teacher and literacy coach. Lauren and her husband Matt feel strongly about sharing their CHD journey and life with a medically fragile child so that other families will hopefully not feel so alone. “Sometimes strength comes in knowing you are not alone.”
Coping with a Congenital Heart Defect: The First Year
Happily Everly After