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Brayden’s Story

Every detail about our 'lil man on his journey...
Be sure to read the latest news in the journal from my momma, sign your email address up so you can recieve an email every time there is an update, view my photo gallery to see how much more adorable I become every day, and drop us a line in the guestbook...

And, here's where my journey began:



After hiding out in my mommy's tummy for 23 weeks undetected, I was finally discovered but unfortunately found to possibly have problems with my brain at the same time. After two ultrasounds in one week, it was confirmed that there was definitely a problem. So, my mommy was immediately sent to specialists in Columbia so that they could keep an eye on my growth and development, and make sure that I made it into this world!Barely making it in at almost midnight on June 30, 2008...I made my long-awaited debut weighing in at 9lbs 1oz and 20 3/4 inches long! My mommy and daddy finally officially agreed on my name being Brayden Alexander...and my crazy, giggling sisters, Isabella and Adysson, finally got to meet their new brother that had been making mommy's belly grow and grow!!My mommy had some problems with the c-section and had to have her bladder repaired, but fortunately I was doing very well. Although my head was large, as the dr's suspected it would be...I was eating, breathing, and regulating my body temperature all on my own without any machines! That was wonderful news...but since they still weren't sure of my exact diagnosis, they scheduled my MRI for first thing the following morning so that they could check out what exactly was going on in my little noggin'!That turned out to not be the best news for my mommy and daddy...I was diagnosed with hydranencephaly, which means that I have more cerebrospinal fluid than brain in my head and am mostly surviving off of my brain stem. The cause is unknown for sure, so that's a mystery. The doctors and nurses all told my mommy and daddy that I wouldn't make it for long, offering options for me to be cared for elsewhere, but mommy and daddy brought me home to love and care for. They sent us home with such little to no hope and gave us hospice care nurses. My mommy immediately started doing her own research and found great hope from other families with their own little miracles.Although my prognosis is very poor according to the textbooks, I know that I have a mommy, daddy, sisters, friends, and family all praying really hard for me....God is the best surgeon and I know I'm in great hands.My mommy will keep everyone up-to-date with my treatments and let you know how well I'm growing in my journal...I hope everyone reading it believes in miracles, because I plan on being the next one and reminding those doctors that they're just practicing medicine, they don't really know it all! 

 Diagnoses: 
Hydranencephaly 7/01/2008 
Atypical Absence Seizures 8/2008 
Tonic Seizures 3/2009 
Severe Astigmatism/Corrective Lenses 10/15/2009 
Reactive Airway Disease 7/22/2010 
Gastrointestinal Motility Issues (primarily chronic constipation) 10/22/2010 
Hip Dysplasia 11/24/2010 revoked 12/2010 
Focal Complex Seizures 12/30/2010Severe Mixed Spastic Quadriplegia Cerebral Palsy 1/2011 
Tonic-Clonic Seizures with Secondary Generalized Seizures 4/2/2011 
(possible dx) Lennox-Gastaut Syndrome 4/2/2011 
Gastroparesis 9/14/2011
Bilateral hip Reconstruction 7/23/12
Pneumonia/Septicemia PICU stay 8/2012

Brayden joined the angels on November 15, 2012 after respiratory failure at home (http://www.facebook.com/RememberBraydenAlexander). His little light will continue to shine through the Brayden Alexander Global Foundation for Hydranencephaly, which does business as Global Hydranencephaly Foundation (http://www.hydranencephalyfoundation.org)

Latest Journal Update

Birth Story

I just had the most enlightening time with my new psychologist... ironic that I am striving to BE a psychologist, yet desperately need one myself right now. Let me rephrase that and say, again right now. 

I've been to a counselor in the past for various reasons... contrary to my online persona, I'm certainly not pooping out rainbows and butterflies every hour of every day and looking to the bright side of every situation. I'm constantly under construction, just as the rest of us, when it comes to me.

I don't want to sound hypocritical, because I do believe in always focusing on the positives and always being thankful and grateful for all things big and small... just as I always say and encourage. I just have a difficult time doing it all of the time... and that's ok, I guess.

Today was my consult, my first session and what a doozy it was. 
While Brayden and his life and his departure from earth were not the main topic of conversation, since I have lived a whole life before and am trying to live after, he was a part... just as he is a part of me.

I've never been asked this question.. and I was devastated that I didn't know how to reply immediately

"How did you feel the first time you saw Brayden? What were your thoughts?"

I found myself dancing around the question. I talked about how I knew his condition during my pregnancy, how I had prepared. I talked about how I didn't care that his life would be cut short, but I wanted him to call the shots.

But to answer the real question of how did I feel the first time I saw him:

I don't know, I wasn't allowed to feel anything for myself or think anything for myself.

I was devastated. Despite knowing throughout my pregnancy that he would have hydrocephalus and he would possibly have other deformities not detected by ultrasound; despite knowing he had a brain malformation and could possibly die instantly or have seizures or breathing problems. 

I was angry. SO angry. 

His head was large, yes. Other than that he was perfect. 

I was so mad that the doctors had led me to believe he would have all of these problems, and he didn't. He looked perfect despite a big 'ol noggin'. He had 10 fingers, 10 toes. He had the most perfect little lips and his daddy's cute little cleft chin. 

He looked perfect and sounded perfect and acted just perfect.

BUT, he wasn't perfect. The doctors took all of my initial meeting, my initial oohs and ahhs (which actually came long after his birth since I had surgical complications myself and was in a haze) and turned it in to a horrible blur of death, darkness, and scary medical terms.

Why couldn't I just cuddle up my perfect little man and just let him be a baby... a cute, adorable, cuddly, sweet cooing baby? The doctors, in an attempt (a poor one at that) to make us aware of what might be (and most of which never was)... stripped me of my first meeting of my sweet little man. That moment when you're supposed to shed tears of joy... mine was filled with tears of fear and so much anger with myself and with those guys in the white coats who kept saying death and dying.

I realized today that I was actually encouraged to not love my baby, instead I was encouraged to "not get attached" because we wouldn't have him for long. They took that from me... and there lies some of my anger. 

Hopefully I can change that for other families and they can have a joy-filled first meeting, a happy birthday... with all of the oohs and ahhs and without the doom and gloom. There must be a better way to deliver information without taking the joy out of life's moments. 

And no parent should look back at their child's life and have such horrible memories of the start... regardless the prognosis, there should be some joy celebrated for that life. Whether it is short or extensive, the moment of debut should be joyous.