Meet my monkey.

Yesterday there was a post in a mommy Facebook page I’m in by a fellow mom who had just found out her baby has only a two (versus three) vessel umbilical cord. She was seeking connections, wondering what this had meant for other babies, googling herself into a tizzy. The words popped out at me like lightning from the sky.

Two vessels.

Ellie was ‘diagnosed’ with a two vessel umbilical cord when I was around 16 weeks pregnant. We were sent to a specialist in Boulder for a more in-depth anatomy scan at around 20 weeks because the heart and kidneys develop at the same time as the umbilical cord. Everything seemed to be fine. I saw all of her organs. I saw the chambers of her heart. I saw her kidneys. Nothing stood out as wrong or different. Great! After that appointment, nothing was mentioned about it again. Those two words became obsolete in my mind. Two vessels? Whatever. My kid’s fine! And she was, at least at first. Or was she?

Allow me to introduce you to my monkey.

At this point, I’ll never know if Ellie was born with her coarctation. I’ll never know if it developed shortly after birth, or if she was born with it, I’ll never know the rate at which it worsened. I’ll never know if it had anything to do with that damn two vessel umbilical cord. Never knowing keeps my mind wondering. I wonder if I should’ve requested an additional scan. I wonder if we could’ve discovered her issue right away and avoided leading her down a path where she failed to thrive. All of this wondering has led me to believe there was more I could have done.

This is guilt. The kind that’s with me every day. It’s the monkey on my back, something of which I fear I may never be able to let go. Sometimes it’s a 400 pound Eastern gorilla. Sometimes it’s a Pygmy marmoset. But it’s always guilt, and guilt is always heavy. I hate the word. I hate its meaning and associations. I hate its ability to consume me in a way that feels like I’m slowly drowning. I hate its ability to bring me down so low that I feel unworthy to be Ellie’s mother. In my weakest moments, guilt tells me you should have known.

As we’ve journeyed down this medical road with three surgical pit stops, the monkey on my back has taunted me. One of these days, I desperately hope to come out from underneath the weight of this beast. I hope to be able to look it straight in the eye and tell it to go to hell where I’m certain the feeling of guilt originated. Perhaps opening up about it is the first step toward doing so. Time will tell. But in the meantime, maybe someone out there needed to know I’m right here feeling just as burdened as you might be.

Guilt is invisible which can cause it to be isolating. I guarantee you didn’t know I harbored this monkey on my back, and I guarantee that I have no clue what you may be harboring upon your own shoulders. I’ll take one for the team here and open the conversation. I’m learning that communication is so incredibly vital to my well being. It’s a hard lesson, though. I’m tested every day and fail often. But today, I’m talking. I needed you to meet my monkey named Guilt, and I’ll end this post with a request.

If you need to talk about whatever it is that weighs down your soul, I’m your girl.

Let’s talk about our monkeys.

The call.

She got the call today. 

One out of the gray.

And when the smoke cleared, it took her breath away. 

She said she didn’t believe it could happen to me. 

I guess we’re all one phone call from our knees.

November 28th, 2016. I got the call.

Ellie’s pediatrician was on the other end, explaining what he saw on her chest X-ray that was performed not even two hours earlier. My vision began to narrow, a gut wrenching knot forming with each passing word. Her heart? Super-enlarged? What do you mean?

“You need to put Ellie in the car and drive straight to children’s hospital in Aurora. They’re expecting you. If she turns blue on the way down there, pull over and call 911.”

If she turns blue? Did he really just say that? Is this really happening?

At this point, I’m sitting in my driveway, tears streaming down my face as I answer, “yes, okay.” The moments that followed are a bit of a blur. Ellie’s dad and I gathered her up and drove over an hour to the place I would not leave for the next ten days.

I remember doctors and nurses coming in and out and eventually piling in to talk to us. Their faces somehow simultaneously soft and serious. Ellie had what was called a coarctation, or narrowing, of the aorta. Hers was so severe that her heart was having to work harder to pump blood than it could possibly maintain, causing the muscle to super-enlarge which in turn caused severe left ventricular dysfunction. Big words that literally took hours to understand. We were weeks, maybe days, away from Ellie’s heart entering cardiac arrest. I remember being completely bewildered and wide-eyed. 

We were admitted, Ellie had surgery on November 30th, and we were released on December 7th, 2016. These are dates that changed my life forever, and it all started with a phone call.

Some people love phone calls, others dread them, and I happen to find myself falling into the latter category after that fateful November day. Today, though. Today was an exception.

A couple weeks ago at Ellie’s last cardiology appointment, I was told the narrowing in her aorta may have worsened again. Again. As in for the second time. As in cause for heart surgery number three. As in my world started spinning very slowly, almost coming to a complete stop. Is there a word worse than maybe? Sure. But in that moment, absolutely not. She had been too hysterical during the echo and collecting vitals for the cardiologist to be able to trust his findings. This led to scheduling a sedated echocardiogram during an already scheduled abdominal surgery. We would definitely know then. And so the waiting game began.

For many days now, I have functioned as a shell, never ceasing to wonder what could be going on in my baby’s body. Had her tissue thickened and narrowed again? Would she have to have a third thoracotomy? A fourth surgery? It had been the same amount of time between her first two heart surgeries and that second surgery to now. I guess it would make sense that if it was going to worsen, it would happen within the same time frame. Sense I just couldn’t fathom.

I got the call today.

Ellie’s cardiologist was on the other end, explaining what he saw on her sedated echo that was performed four days ago. I was expecting this phone call. I had been waiting for this phone call. Anxiously. Impatiently.

He told me he was very pleased with the results, that her narrowing had not worsened, and that her heart function remained good. With those words, the absolutely crushing weight of uncertainty immediately lifted and let loose a dam of built up tears. 

My baby. She was okay.

March 15th, 2017. July 14th, 2017.

July 18th, 2017. I got the call.

The eye of the storm.

I’m writing this from the waiting room. The room where parents’ lives seem to hang in mid-air. The room where emotion is palpable. I call this room the eye of the storm. This is my third time in the eye, this one being much less dramatic than before yet still devastatingly quiet. It is the holding space between the hand-off and recovery. If you’ve ever had a child undergo surgery, you can probably still feel the very instant your baby was pulled from your arms. The instant your heart was literally taken from your chest to be brought into a brightly lit room where doctors and nurses and anesthesiologists were waiting to perform their tasks. The eye of the storm is your time as a parent to try to prepare for round two. You made it through the adjusted morning routine that forced you to skip feeding your child breakfast. You made it through one of the longest drives you’ll ever go on, even if the hospital is two blocks away. You made it through collecting vitals. You made it through the millions of thoughts bombarding your brain while your child is still in your arms about what they are about to endure.

You made it through. I made it through.

The last time I was in the eye, the second part of that storm culminated in what will always have a spot in the top three worst days of my life. Ellie was in a state of postoperative emergence delirium for 12 excruciating hours. As I sit here today, I’m wrestling with the images of my baby being unable to open her eyes, rolling around, crying out in pain and confusion. The rational side of my brain keeps telling its other half that she had been exposed to anesthesia for hours longer and that her second surgery was much more intensive. We were in the pediatric cardiac intensive care unit, after all. The rational side of my brain is also trying to explain to the large pit in my stomach that this particular surgery is easy by the standard of an experienced doctor. Read it again – easy! But all the rational thoughts in the world can never change the fact that the last time I was in the eye, it was just the beginning to my life being forever altered by what was to come. When Ellie finally woke from the anesthesia, the moment she saw her mommy and daddy and realized she was okay, is a moment I’ll never forget.

I’m anxious for that moment today. I know at some point soon a nurse will come out and give an update on the surgery. She’ll tell me that everything went well and that Ellie is in recovery. She’ll guide me back to sit beside my baby and wait for those little blue eyes to flutter open. This is the moment you enter the second half of the storm with gratitude and an unfailing willingness to tackle any obstacle of recovery. Your baby made it, so what’s a little more rain to you?

As I learned last time, the severity of the storm’s second half can never be accurately predicted. With this knowledge, I am as prepared as humanly possible today for the second half. I am prepared for recovery to go smoothly. I am prepared to take my girl home from the hospital mere hours after she wakes. I am prepared for her waking to take a little longer and for the possibility of being kept overnight. I am prepared to be a weekend warrior should more concerns arise. I am prepared, yet I am afraid. This is a totally normal combination and I feel no shame in my fear. My child is currently undergoing a surgery that is the only option for her health but will without a doubt affect her later in life. I am confident it is a step in the right direction in a journey that will never end for her. I am confident in these doctors. I am confident in my resilient little warrior. I am confident in my after-care abilities. But today, right now, in the eye of the storm, I am afraid. And that is okay.

So if you ever find yourself in the eye of the storm, know that it doesn’t last forever. It literally can’t. The seconds may drag on for what will feel like an eternity, but your nurse will come. I promise they will come.

So here we are.

My name is Kelsey. I’m the mother to a bubbly 15 month old daughter named Elliott Grace. You can call her ‘Ellie.’ From the outside looking in, we seem pretty normal – if that’s a thing. We function well together. We giggle and learn and grow. We also go to a lot of doctor’s offices. You see, or more appropriately don’t see, Ellie goes beyond the definition of ‘special’ that most parents use to describe their kids. My kid, she’s genetically special. She was diagnosed at 10 months old with mosaic Turner syndrome.

Turner who? What?

From turnersyndrome.org – “Turner Syndrome (TS) is a condition that affects only girls and women. It is identified by a difference in the genetic make-up of those who are affected. Most girls and women have two complete X chromosomes (the sex chromosomes for females). Turner Syndrome is caused by the absence of all or part of the second X chromosome in some or all of the cells of the body.”

If you’re totally confused by that, don’t worry. I was and still am at times. Basically, Ellie’s missing an X though her case is not textbook. You’ve probably googled it or plan to after reading this post, which is to be expected, and might be wondering why she doesn’t seem to fit the physical description. Ellie has what is called mosaic Turner syndrome. Specifically, her cells are split 50/50 with XY and XO chromosomes. I know, even more confusing. From what I understand, this additional word means that anything associated with Turner syndrome may or may not happen with Ellie. She doesn’t appear to have anything particularly going on other than typical baby things. It’s not until we looked further after the discovery of her heart condition that we knew there was more to her than meets the eye. Her Turner syndrome is completely unique to her, which brings me back to that word I used earlier. Special. Ellie’s genetics are special and with this special set comes a special way of life.

If you’re familiar with us, you might know bits and pieces of our journey. It’s been on my heart to put it down in words for awhile now. Maybe this is something Ellie will be able to read someday, or maybe this blog will be found by a wide-eyed mother googling her way through her daughter’s recent diagnosis in search of answers that might not exist yet. So here we are. Whoever you might be reading this blog, I welcome you into our world.

A world of mosaic grace.