From the Eye of the Storm...

So many times we've been faced with situations that redefines who we thought we were. First, we begin early in childhood with creating the perfect Christmas Wish list & then comes Jr High when we we are dealing with how to adjust to puberty. We move down the line to High School & you all can attest to the biggest decisions in life at this juncture; Prom date, Prom dress!! After that comes electing the right college to attend, landing that dream job & moving up the corporate ladder in your career. Don't forget searching for that perfect mate, marrying your soulmate, finding the perfect house & the most meaningful name for your first child. These are all definitive points in our lives & we take much pride in those special moments that we only get to experience once. You nearly become defined by them, attached in a way that they become one with you. It isn't uncommon that any decision making process comes with pros & cons, that they are met with the ideas & opinions of those close to us. Often times they come on the heels of those unknown to you. Plainly put, social criticism is & always have been ingrained in our culture. As the reader, you can already fathom the journey we took together was a long one.

My daughter Haley Jean was born a preemie, 30 weeks exact & stayed 6 months in the NICU. She went through a plethora of health problems, to simply name one hurts my soul to the core. I prided myself on sharing her journey with others, as an inspirational force to those in need of hope. So you can imagine the amount of questions I had thrown at me left and right.

During the course of motherhood, I received a lot of questions from spectators. I've found that it's easy for people to ask questions & criticize when they just don't understand the unknown, mainly when they're not the ones in the control center. The questions came from various avenues; concern, fear & especially out of curiosity. I had to realize that my situation was quite unique, new & fascinating to some. Because of this, I felt it was necessary to recondition my mind to this new normal. Though it didn't happen overnight, in time I became accustomed to learning how to incorporate this new plan of action into my life.During this time, I dealt with a lot of trauma. One can't begin the emotional pain I felt as I sat in a closet sized family conference room during a phone interview for a new job while Haley Jean was being extubated. Or the nerves I felt when my phone rang at 3am from the PICU & being told that your daughter coded 3 times,,,,, How did I do it? I don't know.....

Questions that arose were "Why have a child knowing you're disabled" "Why all the tubes?" "Isn't there another way to get blood?" "I read this procedure on Google, I don't think you should allow those docs to perform this on her, would you like me to email the link to you?!!" "There's got to be another way, have you asked??" And that's just the tip of the iceberg. The emotions I felt when people would ask things were synonymous to ripping a band-aid from its wound, I've found that its easy for people to ask "Why did you do this" or "How come you didn't do that" when they weren't the ones at the bedside 'round the clock. Questions are easy for people when they aren't the ones making decisions that will ultimately determine life or death. It's easy for people to ask questions when they haven't been at the bedside for so long that you literally lose track of time, clothes go unchanged for days at a time because you're frightened to death to leave for a moment. Your body aches from sleeping in an upright position in the recliner for many nights in a row Its easy to ask questions when you're making decisions but you're sleep deprived & can't recall the last time you ate. You're appetite simply eludes you, all that matters is that precious little critter in which the Lord entrusted with you to be her mother. Out of all things asked, I wanted to write this piece to discuss why I didn't authorize a tracheotomy. Here's that journey...

One day, during a plan of care meeting with her team, the idea of a  possible tracheotomy was brought in conversation. I kinda had a feeling the conversation was inevitable. They felt this was her best option considering the many times in the past she'd fall into respiratory distress, where her breathing became compromised & labor intensive. In such case, she'd need immediate respiratory assistance through a ventilator. However, there were instances where they'd attempt to intubate during an emergency, once recalling a time where they tried 9 times.....A feat attempted by Rush's finest PICU staff & Attending's. She'd have edema or swelling of her trachea which would make intubating a hazardous nightmare. A trach would eliminate the time & hassle in future emergency settings. They could simply hook her up to the vent in literally seconds.  Here are some factors as to why I opted otherwise.

For starters there were a few mitigating factors that played a huge roll in that decision making process. One was [keep in mind I'm NOT a medical professional] simply looking at her phycial makeup it seemed there was no room to safely & successfully trach her. Haley Jean was super chunky with a very short neck length. In my thinking, I figured if intubation was a challenge when hyperextending her head/neck briefly, I'd imagine a tracheostomy would be 10x more difficult to live with daily. The collar alone would have difficulty wedged between her neck & chest along with much needed 24/7 home care nursing, requiring constant cleaning. In fact, a day when traching was put on the table during a plan of care meeting with the staff, her day nurse idly spoke these very problems to me. It was as if she was reading my mind, the irony was that she was a professional, I am just a mother.

Limited mobility & quality of life would take a huge decline, as her current state of mobility was already strained. She was tethered to an oxygen concentrator with canulla, pulse oximeter to monitor o2 sats & heart rate, G-Tube for feeding, as she was NPO [no feedings by mouth]  as well as administering 'round the clock meds. Simply catching flying bubbles was a feat in its own right....a feat that made me so proud to be the Chosen One; her Mom! This & reaching for toys were milestones for her. Following or tracking your finger were also worth celebrating & praising. So in my mind, a tracheotomy would only serve as an arduous impasse, both physically & safely.Would she live through the operation or would they lose her on the table was my biggest concern. And after much contemplating, we all came to the conclusion to opt out.

Another reason behind the decision not to trach was because Haley Jean's threshold was particularly low. Meaning she'd have a respiratory setback yet very brief. And if the risks outweighed the benefits, I didn't want to gamble with her life. So with all these factors involved,  I truly believed she'd do well without a trach. Conversation about a trach came on the heels of her Pulmonary Hypertension diagnosis. Please know, this decision DID NOT come lightly. It didn't come easy. In fact on the contrary. It presented itself on sleepless nights & worry some days.

This journey was a rather unique one, that as I stated above has redefined who I thought I was. I've learned something new about myself that I never knew resided in me. It's been 2 years & I still cry wondering if I did everything in my power correctly. I like to fancy the idea that me being born with a disability set the tone for this path I have taken. It merely served as a prerequisite to this test of life I acquired. If this is so, this disability was the BEST thing that ever happened to me...<3

Some friendly reminders....Click links below for more things Haley Jean & Me!


http://www.audacitymagazine.com/mom-and-baby-no-regrets/

https://www.facebook.com/HoorayForHaleyJean/

http://www.thepicta.com/user/braceletsforbravery/3531438141

https://www.instagram.com/zuezuesknots/