If only you could see the pile of posts I have on deck for this blog: recipes, stories, DIY hacks, and a plethora of parties. My clients’ blogs have taken a place of importance these days (because client’s pay, and while this blog makes money and has many more followers than blogs about home warranties and real estate, mama’s gotta pay her bills!)
Lorelei is now a year old, officially. Her birthday was in February. This month though, she reached her adjusted 1 year old age. Hooray! We made it! And boy, what.a.year. She is really behind physically and developmentally, but she is happy, relatively “healthy” considering she has a terminal condition and she is still moving in the right direction. Oh, and I have to mention how outstanding her hair is these days?! The girl has got excellent hair!
Today, April 19 was one that I knew would sting a bit for me. As I sit here at 630PM, my heart is full of bittersweet emotions: hopefulness, sadness, and a pain that shakes me to my core, paired with love and thankfulness for where we are now and the sleepy pre-bedtime snuggles Lorelei shares with me every night in our home.
One year ago today, Lorelei’s g-tube was placed. She underwent her first surgery. We handed her to a surgery team and trusted them with our little girl and all of her unknowns. We prayed. We worried. We prayed some more. Mito kids can’t handle certain types of meds and anesthesia treatments. We really didn’t know how April 19, 2016 would pan out.
We could not even have imaged the outcome we received.
When our surgeon came into the waiting room, with the biggest smile on her face, a wave of relief washed over me. She did it. Lorelei did it. I was still very sad that my daughter now had a piece of equipment in her tummy. She had a new, semi-permanent addition to her body, showing everyone that she is “special.” (That feeding tube though, one year later I can firmly say I am so thankful for it.)
But as I type this, at 630PM – my heart aches thinking about this exact moment 365 days ago. A moment that we haven’t shared with many people. A moment that quickly defined the type of mother I would become. A moment that shakes me every time a new doctor or nurse lays their hands on my child. A moment that is one more reason why I don’t trust many people.
One year ago right now, I was eating pizza, in our new home, surrounded by family. It was the first night in weeks that I was not at Lorelei’s bedside because she needed to recover from surgery and couldn’t take a bottle that night anyway. I remember getting ready for bed early that evening. I was well beyond the point of exhaustion. But I remember this feeling, a feeling that only a mother can explain. I told my husband, “I just feel like I need to be there.” I NEEDED to be there. She needed me.
He convinced me that I had been there most of the day, that she was sleeping and that I needed to sleep also. So I put on my pjs, climbed into bed and my phone rang.
“This is one of your daughter’s doctors. There has been an incident.”
My heart. I thought it was going to explode. I felt like time paused and there was no air for me to breathe. Before surgery, they prep you for the side effects and the worst case scenarios – you know, things like stroking out, acidosis, death. So I waited, expecting to hear there was a complication with one of her medications. Expecting to hear that our worst case scenario happened. Because I had seen parents lose their babies in the NICU. I had experienced families crying as their babies were baptized in a cold, sterile hospital NICU pod, before she went home to Jesus instead of home with her Mommy and Daddy.
“There has been an incident.”
“Okay. Is she okay?”
“She has a broken femur.”
Imagine that moment, when Zack Morris says “Time In” and everyone crashes back into place.
“She has a WHAT?!?”
Someone made a terrible mistake during an IV stick. A nurse (and team) that we were forced to trust to care for our daughter, hurt our child. The pain I experienced that night, throughout that entire week, and still experience today, because of a quick mistake, was like buckets of salt in an open, infected, raw wound. It is a feeling I had never felt before. Someone broke my kid. Someone hurt my 6 pound, 9 week old, tiny baby. A baby that already had a rough start and an extremely unfair diagnosis.
And unfortunately, that wasn’t the worst part. I fully understand that accidents happen. A femur break is a very, very bad accident. But days later, their story started to come together and we realized that our sweet child laid in her bed for 4ish hours, with a broken femur, zero pain medicine and no one even noticed.
When the night nurse clocked in and began her rounds, she noticed that Lorelei was crying more than most babies do 12 hours after feeding tube surgery. She then called the doctor and asked for him to check her out. That night is such a blur for me. I remember almost every single nurse and doctor we had throughout our 77 days in the NICU but for some reason, I cannot remember who the nurse was that brought her A-game to night shift and rescued Lorelei. Whoever she was — from the bottom of my heart, thank you for paying attention to her cries when I was not there.
We have not shared this story with many people. And you better believe I am leaving about 5 more hours of details out of this blog post. So why share now? Early on, in this twisted and unexpected journey, Michael and I decided that we wanted to help as many people as we could along the way. Whether it is other NICU families, other mitochondrial disease families, doctors or nurses. We want to help people (including ourselves) learn how to do things better in medicine, life and faith.
If I could only say one thing about this “incident” I would say it shook my world, almost as much as her diagnosis. April 19th may have simply been a bad day at work for that nurse, but it is a day that will forever play over and over again in my head.
Your career of choice doesn’t matter. Whatever your calling is, do the best you can do and remember your job impacts someone. Your actions and reactions matter. Hopefully sharing this part of Lorelei’s story will stand out to someone, making him or her think differently. Think above and beyond a mistake. Think about consequences. Think about saying those three words that my heart aches to hear, one year later: I am sorry.