Wednesday, December 4, 2013

The blog post I wrote about whats up, in order that future posts have proper context, and don't come out of nowhere...

Life is wonderful.
Life is crazy.
Life is difficult.
Life is interesting.
Life is emotion-filled.
Life is agonizing.
Life is surprising.
Life is painful. 

Life is wonderful.


I've been avoiding this space off and on for what seems like an eternity. 

I avoid writing and sharing, but I need to write and share. It helps. Like pouring rubbing alcohol onto a fresh cut. 

You know it's ultimately going to help you... but it sure does sting. 

I feel like if I'm gonna actually be able to really begin writing here again, I'm gonna need to start with some back-story. Some context, if you will. So, I'm just gonna jump right in.....

One week and one day before my due date when I was pregnant with Little Man, I woke up and felt pretty strange. I wasn't out of breath or light-headed, but I could feel my heart acting-up. It's like it was quivering rather than beating. I had my weekly Dr. appointment set for the next day, but I called and asked if I could come in that day. 

I got to the office and my Dr. did all the usual checking. 
Doppler baby-heartbeat check normal. 
Normal blood pressure. 
Barely dilated. 
Then she grabbed my wrist to check my pulse rate. She got a very odd look on her face and told me 2 things... 

1. "I'm going to send you across the street to the hospital so they can run a few tests."

2. "You'll be having your baby tomorrow via C-section." (which is something I'd never had before). 

Right around noon, I walked across the street to the hospital, heart still gyrating, thinking I'd have my blood pressure and pulse checked once more and then be sent home to get ready for my C-section the following day.

Instead, I was put in a room, hooked up to no fewer than 15 different cords, each monitoring something different. 

I had a blood pressure cuff put on my arm. 

I had a heart monitor with several leads attached to my chest.

I had a baby monitor attatched to my stomach.

I had an electrocardiograph.

I had an echocardiogram.

I had several needles jabbed into my arm, sucking out a dizzying amount of blood.

At one point I asked a nurse when I'd be able to run home to grab my stuff. You know, all the stuff I should have already had packed in my "going to the hospital bag", all the stuff that I had a nudge in my gut the night before that I should pack up, but ultimately hadn't yet packed because, of course, I wasn't due for a whole 'nother week. 

She just looked at me and said, "Oh, you're staying here". 

This was actually my first indication that something could really be wrong. 

I'm not sure how much time actually passed before the cardiologist came in but once she did, the rest of the day was kind-of a blur. 

I remember her walking in, introducing herself, and matter-of-factly asking me if I knew that I had a prolapsed valve.

I said "um, nope". 

Diagnosis: Prolapsed Mitral valve including mitral regurgitation and arrhythmia. 

She proceeded to explain what all of that meant and said that the valve issue was most likely something that I've had since birth. 

Sparing as much of the sciency-medical speak I can, ultimately, a valve that should snap completely shut during an early point of the heart-beat, doesn't completely close, allowing blood to leak back up into the chamber above. Over time, the blood that leaks back upward causes that chamber to enlarge, which then causes the electrical system of the heart to be thrown off, causing irregular heartbeat. 

Oh me, oh my. I just thought I was having a baby.

I didn't sleep at all that night, watching the hours tick by on the clock. I kept myself distracted by the anticipation of bringing a new little life into the world, however differently that may have to take place than what I was familiar with. 

The next morning, I was prepped for surgery and wheeled down the hall and into the OR. Heavy meds tend to nauseate me anyway, but apparently the spinal-block really didn't agree with the fact that I hadn't had anything to eat since before 11:00am the precious day. There I lay, arms stretched at my sides, while the elderly anesthesiologist patted my head and held the kidney-shaped dish at my cheek while I attempted to vomit without the aid of being able to feel any of my stomach muscles. 

It's amazing how quickly things go in that room. It seemed like mere moments between my laying down and Little Man making his appearance. But, before I actually heard his cry, I heard something else that the mere thought of it puts a pit in my stomach to this day. Unable to see her face on the other side of the sheet, right after lifting Zeke out of my stomach, I heard my Dr. say "OH Emily....."

"What?!" I said back. I immediately looked at Gabe who was peering over the sheet, to see if I could try to read what was going on in his expression. He just said. "It's ok. He's ok". 

My Dr. then proceeded to tell me that at some point while he was inside, Zeke had flipped himself around and tied his umbilical cord in a full knot. And that sucker was TIGHT. 

In that moment, I realized that if things had gone differently, I very well may have left that hospital without a baby in my arms. 

I do not for a MOMENT believe that God caused any of these health issues I've encountered, but I do believe that on the morning of March 1st, 2012, whatever ultimately caused my heart to start flipping and flopping out of nowhere, could very well have saved both Zeke's life, and ultimately mine as well.

Zeke was a very healthy little guy and he and I left the hospital with nothing more than a heart monitor attached to my chest and follow-up cardiology appointment set. 

I'm gonna fast forward thru the first few months after Zeke was born...

24hr heart monitoring for a few weeks
Cardiology appointment
Trip to the ER
Put on medication
Life continues on with the understanding that my valve would eventually have to be dealt with, but hopefully not for at least 10 or 15 years. 

In the meantime, my personal life had become a bit more complicated than I ever imagined could be possible. The details of which I shall refrain from sharing, unless and until it becomes appropriate. However, the increase in stress led to an increase in blood pressure, which ultimately led to an acceleration of the volume of the blood leaking from my valve. 

I ended up making another trip to the ER this past September, after which the on-call cardiologist recommended some testing that had previously been deemed unnecessary. 

I underwent what is called a TEE or Trans-Esophogeal Echocardiogram (translation: ultrasound of the back side of the heart that is done via a scope that is fed down your throat). I was sent home with the understanding that someone would be contacting me as to the results of the test. 

A week went by and since I hadn't heard anything back yet, I gave them a call. 

I was passed from one nurse to another and was given a bit of a shock.

"We've passed your case on to the Mayo Clinic and they should be contacting you soon to set up your appointment."

Oh wow... ok...

Ultimately my regular cardiologist was not 100% certain about pulling the trigger on sending me to surgery soon, but several of her colleagues felt strongly about surgery sooner than later, thus, I was referred on to the folks that deal with this situation a little more frequently than they do here in little 'ol Sioux City. 

Towards the end of October, we traveled up to the Mayo Clinic where I underwent a battery of testing and prodding and general medical-related shenanigans. 




After all was said and done, my final appointment of the trip was with a cardiovascular surgeon, in order to find out his official, professional opinion: surgery later, or surgery now?

His professional opinion: surgery now. 

Wow... um... ok...

The general valve repair rate across the United States is anywhere between 40-60%, meaning that almost half the time, when a Dr. goes in to repair a valve, it is ultimately determined that the valve cannot be repaired and must be fully replaced, which then would require the patient to be on blood thinners for the rest of their life. 

The valve repair rate at the Mayo Clinic is 99%. 

Feeling better already. 

Also, did I mention that the gentleman who will be preforming my surgery is #1 in the ENTIRE WORLD for dealing with this particular heart valve issue?

Yep, better still. 

After getting that news, I was then presented with the following decision: Would I like to undergo the traditional, full-on, open-heart-surgery? Or would I prefer the go the robotic route? 

Um... really!?? You're leaving this decision up to ME? I'm quite sure I'm not the one who went to medical school and I'm not sure such a decision should be left up to someone with as limited of a knowledge of medicine as myself! Oy vey...

I just sat there staring at him for a minute and said "uhhh.... I'm not sure..." (initially it sounds like it should be a no-brainer, but there are pros and cons to consider with each option). 

He explained everything he needed to explain and asked if I had any questions. I thought for a moment and said, "I really feel like I should have more to ask, but my brain is quite blank at the moment". He calmly reassured me that I actually don't have any more questions because he had covered everything already. Then he handed me his personal card and told me he'd see me soon. 

Though I was still experiencing a measure of shock at the thought of undergoing heart-surgery, I felt better after talking with the surgeon than I had beforehand. 

I called back after a few days and told them I had chosen the robotic surgery option and we got my date on the books.

February 3rd, 2014. 

I think that's where I'll stop for now. I'm glad to have finally gotten all this out of my brain and onto the screen. 


For those of you who are hearing about all of this for the first time, I apologize that this has kind of come out of left field. Rest assured tho, for months now, after being pelted with what seems like palates worth of lemons, we're makin' lemonade 'round here like CRAZY.  :)

For those of you who may already have known some of whats been going on and have contacted me with encouraging words and thoughts and prayers, your messages have meant more than you know and I thank you from the very bottom of my heart... which I undoubtedly know much more about now than I could have ever imagined. :) 

Through it all, my faith remains unshaken. God is BIG and I'm so thankful He's always with me. He's walked me through far too much to leave me stranded now. My story is just beginning.

Updates to come...

Much love and happily,
Emily

















3 comments:

Shelby Pierce said...

Thank you so much for sharing this. My initial feelings are shock & fear- then, the gentle constant reminder that God is in Control. I think you are a brave courageous woman, (I always thought this even prior to the heart condition news) and I have always loved your spirit. I'm so happy I got to see you with your beautiful clan at Target a couple weeks ago- I'd been getting away with seeing you on your own at Art Shows and didn't quite have a clue there was a bigger picture until that night. I need you to know that I (no doubt like so many others) value and love the person you are and your story is a great reminder of the beautiful colors you bring to the tapestry of our world (again, all this exists without you having a heart condition, but suddenly is a lot more in focus). I hope and pray for the absolute best as you, your family and those around walk this journey. - All my Love, Shelby.

Aimee Ramirez said...

Our prayers are with you and your family Emily.

Hugs,
Aimee and Joe

Hollie said...

Finally catching up with your blog. Holding you in love and prayers sister. I know the surgery has passed, but wishing you healing. I will be praying for you and your beautiful kiddos. xoxo