We got such an incredibly thoughtful surprise Friday, which reminded me that despite all the scary and horrible things that are happening in the world, there are good people and good stories
Our daughter, Everly, was born with a congenital heart defect (CHD). That means her heart didn’t form in a way that would be able to sustain her out of utero. That means 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. That means she had a total of three open-heart surgeries, two cardiac catheterization procedures, and one infection wash out surgery that reopened her chest all before her 1st birthday. That means that although we’ve gotten almost a year “break” from open-heart 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. This meant lots of extra appointments, painful dressing changes, new specialists, new medications. This meant visiting the high risk cardiology team located (on a good day) almost two 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 half a heart and about 75 percent 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 three hours, for a total of eight 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 two 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 two years… 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 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 getting some patches to sew on it 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 two 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 healthy). So I scheduled the appointment for Friday and purposefully planned a trip to a friend’s house after to take the sting off the sock 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 fortunate to have the very best, most compassionate medical team for Everly. They truly care for her. 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 or hear what’s going on in the world in the news, but then something like this happens and you remember 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.
We are so incredibly grateful there is something that can be done 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 can be 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” (Something I picked up in my teacher years, which feel like eons ago) and 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.