Thursday, September 24, 2015

To the doctor that urged me to abort my child with a heart defect.

My views on abortion have changed since leading into adulthood and becoming a mother, especially after being faced with decision of bringing a child who would be medically fragile into the world.

While in my college courses years ago we discussed the topic quite often since I was leading into a career into the medical field. I often thought about if I was faced with the decision to abort because my baby had a major medical condition and most likely would not live, especially if it meant the child would have numerous medical procedures. But I had learned over the years that doctors are not always right, and they don't hold a magical book that can determine the exact date of expiration on a life. 

When I walked into your office I was scared, overwhelmed and in medical mode as I watched the tech scan over my plump baby bump. I could see the blood flow was wrong in his tiny heart. But I also felt him roll around and I seen his tiny facial profile.

When you walked in you talked directly to the Ultra sound tech. Saying things like Critical Aortic Stenosis, when you smiled and said "Excuse us for speaking our "doctors jargon", I will explain fully in a minute.". Your face turned to utter surprise when I explained that I already knew what you were talking about, at which time you directed the conversation to me and explained how I was a very observant person to have seen that our 20 week fetus only had three chambers in his tiny heart. 

You went on to explain that you have never seen a case this critical that did NOT turn to a condition called Hypoplastic Left Heart syndrome. That his left side of his heart that was extremely small and barely functioning would end up no longer functioning. That his Aorta was and would continue to become narrow/smaller. At this time we would have a list of options, none of which would be easy. 

We could choose:
*Birth him and then take him home for compassionate care. (no interventions, just watch him waste away and eventually pass away.)
*3 open heart surgeries before age 4
*Heart transplant

Abortion, though, was your main focus. You continued to speak of it. Saying how this life would be hard on him. That it would be extremely hard on our family, as my husband and I were younger and we already had two younger children. You said he would have little to no quality of life. You said we should decided within the next 2 weeks because of his gestation. 

I was pissed, and hurt at such a gesture. Here we were receiving life changing news and you were telling me I could just end it all with a simple decision of ending his life. A child that I had carried now for 20 weeks. I had felt him kick, seen pictures of his little face. There were options to help him sustain life and you just wanted to get rid of him. You gave us no hope, as you said most of these kids don't make it out of the hospital, and most never make it to Kindergarten. 

3 years later I have begun to understand why you stated these things. Why you continued to bring it up, and why you seemed to be angered at the thought of us not choosing it. 
I understand that at your place of work you are faced daily with the faces of grieving parents. Parents you have just told devastating news to. Parents wanting to hold onto their bundle of joy for as long as they can. Consumed with their emotions and "selfishness" of wanting to keep their child alive. Because who wants to face the scary part that most people never experience? I am sure you thought about the tax dollars "going to waste" for a child that wont make it anyways. You were not properly educated on the new technology and interventions that have been keeping children like our son alive now for the past 20 + years.
You were thinking of another young couple taking on to much, and another child being placed in the system because they cannot properly maintain care for such a fragile child.

I understand. 

Your words stick with me daily. 

 When he came out of his first open heart surgery hooked to life support, hanging on the edge of life and death. I seen heartache. 
When I seen his enlarged heart beating through his chest cavity because he was to swollen and unstable for his chest to be closed for 2 weeks. I seen hardship.
When I seen him cry tears but heard no sound because of his breathing tube. I second guessed my decision, just like you did.
When we made the decision to have him moved to a more equipped facility out of state and I was separated from my husband and children for four months. I stood by his side every day.
When I seen him smile for the first time, I seen quality of life in the form of happiness.
I watch him use his walker through our house, as he smiles and yells "I luu you mommy" I hear quality of life and see it with my eyes. 

Though he had and has many daily struggles, he perseveres. He smiles daily, he laughs big belly laughs. He gives the biggest hugs, and makes our family complete. 

You said most of these kids don't make it to Kindergarten, and we have seen that evident many times, sadly. BUT their lives where worth every second. Their smiles will forever be remembered. The memories they made with their parents will also. 

Next week our sweet boy will be starting in the Preschool near our home. I will be handing him off again, but in the best shape he has ever been in. We know the reality of losing him at a moments notice, we have come close many times, but I know we made the best decision for him when we chose to fight. Any second we have or have had with him has been worth it, maybe not always the easiest, but ALWAYS worth it. 

Even with his Critical Congenital Heart defect, mixed with the Hypoxic Ischemic Brain injury that occurred during his first surgery (that caused him to have Cerebral Palsy), he still continues to amaze doctors with his continual progress. 

This type of life isnt everyones best choice, and we understand that. We also understand that it is your duty as a health proffessional to give us all options (even the uneasy ones), but our choice was best for us. I hope that one day you will have the pleasure to meet our sweet boy, and that you can be better acquainted with survival rates of children like him in the near future. 

What they didn't say.

When we were 20 weeks along with our 3rd pregnancy we went in for our normal anatomy scan, or what others associate with the ultra sound to find out the sex of your baby. Whether you were buying blue or pink soft onesies, hair bows or bow ties. 

   But for us, it was a day that changed us forever. 

At our 20 week anatomy scan they couldnt get a good look at babies heart, though I could only see three chambers each time it danced across the screen. We were sent for fetal echo in hopes that it was "nothing" and we were just being overly cautious. We only wish this was the case. 

 Our boy was diagnosed with a Critical Congenital Heart defect. 

We were told MANY things that day.

 Like his left side was extremely small and barely working (his heart that is). 
His Aorta was small and narrrow. 
He may not survive. 
His life would be hard and have little to no quality.
We could choose abortion. Abortion was an option. If we chose abortion it needed to happen somewhat quickly because of his fetal gestation. ETC ETC. (I mentioned this multiple times because it was mentioned multiple times!!). 
This would be a huge change and challenge to our little family with my husband and I being somewhat younger and having two small children already. 
We would have a few options. Abortion, give birth to him and take him home to pass, three open heart surgeries before 3-4 years old, or heart transplant. 
Because we didnt choose abortion this hospital only offered to do the three surgeries or compassionate care/hospice. 
We were told the hospital was great and could handle it. 
He could have multiple developmental delays. 
It could be a rocky course of recovery because every child is different. 
Become accustomed to PICC lines, IV's, heavy narcotics, breathing tubes/machines, Oxygen Saturations, Blood pressure. 
He could pass at anytime, and most of these kids dont make it to school age. 
We would go home with machines, daily phone calls to check weight and Oxygen. 
And so much more. 

There is alot we werent told. Alot we werent prepared for. 

They didnt say that we would learn to wear an array of masks to make it through the day.
They didnt say that we would learn the hospital better than some of the staff. 
They didnt say that while its challenging, we would learn to balance hospital life with home life/time with our other two children.
They never mentioned ECMO (life support) as a possibility. But it happened.
They never mentioned possibility of brain bleed or brain damage occurring that could change his life and make for more challenges.
They didnt say that we could become accustomed to all of this and more.
They didnt say he would make it. 
They didnt say I would sit by his bed and beg for his pain to go away, even if it meant me telling him he could move on past this world if it was to much. 

Out of everything, they didnt say that we would learn to celebrate EVERY bit of progress. That we would learn to juggle better than any circus clown and do it with a smile on our faces most days. 
They never mentioned that we were strong enough for this life. (We still break at times, what parent wouldnt.)
They never said we would learn to love through any pain that came.
They didnt say he would have an infectious smile that could make even the most stone cold person light up.
That he would smile even through his biggest struggles.
That he WOULD start school one day, and the days in the hospital would just seem like a dream at times.

Wednesday, September 16, 2015

Late night journal entries, saving my mind one at a time.

Often times, late at night, I cant sleep. I feel an extreme urge to write down whats on my mind. 

I guess this urge came from years ago when my therapists gave me a list of ways to cope with my depression and anxiety. It has saved me more than once. Sometimes just jotting down what keeps playing in my mind can help me feel a sense of relief. Like its not just trapped in my head. Its out on paper, and its real, and I can share it with others if I choose. 

The past few days have been hard, I cant pretend they haven't. When its quiet, and I am just staring at my sweet boy playing so innocently in the floor with his toys. His hair swept over to the side and his comfy jammies. And his smile, oh his smile just reaches me in a wave of emotion. This time three years ago Waylon was hooked to a multitude of machines to keep him alive. His body was unstable, he needed a ventilator to breath, an umbilical line to pump him full of meds to keep the hole in his heart open. The only thing truly keeping his heart as stable as it was, was that medication. He was heavily sedated because he just couldn't tolerate sound, light, touch. His numbers would drop dangerously low, which was another reason for the ventilator because he continued to stop breathing. 

Even though this was three years ago, the memory and emotions are still so raw. Looking at him happy makes me happy, and emotional at the same time, because I know what he came from. The struggle and pain he endured to get to this place. 

I have went back to this journal entry often this past few days and felt it was time to share because I feel like others could understand, I get comfort from that. Knowing that I am not alone in this journey with my child is both sad and relieving at the same time. 

Here is my entry from months ago, when I slept no more than 3 hours in a night for 2 weeks.

    I hate the entity called CHD. 
     The dark demon that holds our child's tiny lives in it's hands. 
      Engulfing our entire family into it like a raging fire. 
     Beating down doors, staring you in the face, no where to go. Its not an addict on the street
      you can walk away from and deny.
       It covers you in its "comfort" blanket every day that you have with your warrior, leaving         you wondering "when?" its going to strip them away from you.
       Having you on edge leaving you with vivid nightmares of what could come, and what             others have faced. 
       It takes you down quicker than any storm could and destroys any picture you had of                your child when you first seen that positive on that pregnancy test.
     Its a ROTTEN thing!
    A COWARD, hiding behind deceiving smiles , slow development and failure to thrive               diagnosis.
   The only visible hell left behind is faint scars, blue lips and tiny blue fingers/toes. 
    Scars that are uplifted, used as empowerment. Showing their endearment, their strength,       not their pain. 
     While that entity just tick, tick, ticks away. 
      That bomb waiting to blow.
      Each second precious, but the future feared.
    Will he live???
     Will he beat this????
       We will fight, sutures, scalpel, and doctorates in hand.
      Besides, what else can we do, when the entity has our child in hand and our family held        hostage?
      One things for certain, its all been worth it. 
   Though the seasons change, that will remain the same.
     Its okay to have fear. 
      Its when you become so overly consumed and no longer productive, that you need to re-        evaluate.
    Down times happen. Scary thoughts creep up.
    There is NO manual for this life. 
     I may be scared, but its not defining me. I'm taking it one day, and sometimes minute, at a     time. 
     As long as he is fighting, I am too!! 

All of this so true. I will say it again, this life isn't easy, but it is worth it. He is worth it!