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"Bee"-ography Monday

Posted Jul 18 2011 6:14pm
After a very tumultuously, nerve-wracking early surprise pregnancy, full of unknowns and impossibilities (not the usual shock and excitement), a 23-week old ultrasound confirmed a baby boy with obvious brain abnormalities. Doctors immediately advised us to terminate, something that they had nearly successfully convinced us of, until my niece was stillborn and made me realize that it is not my decision to make. Instead I was referred to a neonatologist in Columbia, Missouri, who also held little to no optimism for this baby and his little life. 


Looking back, I didn't even really receive any prenatal medical care... I drove 45-minutes for regular prenatal visits, to be told over and over that it's not to late to terminate, that the baby is suffering, and for consecutive ultrasounds simply awaiting the day that his little heart would have stopped beating.

A diagnosis was never confirmed: at first it was agenesis of the corpus callossum, then it was holoprocencephaly (HPE), then it was porencephaly... all the while it was obvious that there was severe hydrocephaly and a vaginal birth would be impossible.

A c-section was scheduled for July 5, about a week before his due date. Daddy was transitioning from boot camp for the Navy in Great Lakes, Illinois to training in Charleston, South Carolina while my two girls and I were still living in Missouri.





Fortunately, he was going to be able to come back for the delivery... one that the doctors still insisted would never happen. If it did, they advised, he would have horrible seizures, suffer from hypothermia, not be able to eat or breathe on his own. He would definitely not leave the hospital with us, we would be fortunate to meet him and share a few hours of his suffering with him. Not once was a positive word uttered in regards to his life.

Brayden Alexander, a name that was quite difficult to settle on when I was half a country away from his daddy, had much different plans. Not only did he make his debut earlier than expected, forcing daddy to rush back to Missouri on an emergency flight, but he did none of those things the doctors had anticipated. During the c-section, the surgeon lacerated my bladder... nothing worse than hearing, "OOPS," as you're lying on the operating table! As it turns out, my afterbirth experience was far worse than Brayden's was, he proved to be a fighter through it all!
In the wee morning hours after his birth, an MRI was done to establish an official diagnosis. It was obvious, due to an extremely large head circumference, that he had severe hydrocephalus. In my room, in a fog from the medications on was on because of my own recovery from two bladder repair surgeries, the doctors came in to deliver the news. Brayden did not have a brain, he would not survive much longer. I wanted more information, they gave me the printed material from the National Institute of Neurological Disease and Stroke, the first thing that came up in a Google search.


That day, Brayden left the PICU and came to my room. He was doing amazing, eating from a bottle and breathing on his own. There were no signs of seizures, he was a little cold but most babies are after birth. Aside from a very large head, he was adorable and perfect. The nurses had to make him a special hat because the typical hats would not fit. But from that moment on, aside from tests and such, he stayed with me. I read the pages the doctors gave me, over and over, and couldn't even believe it. This didn't fit, Brayden seemed fine...


After my own recovery, I was approached with the question of, "what are you going to do with Brayden when you go home?" This wasn't even an option, he was going home with us. They still were so sure that he wasn't going to live longer than a couple of weeks, that care for him would be difficult, and offered for him to stay in the hospital until his passing. There was no way I was leaving my baby to die in the cold-hearted environment of a hospital, if he was going to die he was dying with his family at home... but that scared me, so much that we stayed an extra day just to emotionally and mentally prepare! 




We established hospice care, landing the most amazing hospice nurse imaginable. Cheryl Wallace went with me to appointments, never batted a pessimistic eye, and always supported our hopes for him. That first month seemed to last an eternity, I had a catheter for my own injuries, was severely depressed, confused, and guilt-ridden... at a complete and total loss, completely helpless and hopeless.




About a month later, we were dropped from hospice upon electing to have a shunt placed. By this time, in Brayden's first month of life, his head had grown 6cm larger... when it was already large. I should reword that since the surgery was by no means an elective, we had to fight tremendously for it! The doctors, again, were so sure that Brayden would not benefit from having a shunt placed and that the risk to him in surgery was much larger. Thank goodness for my best friend, Debbie, who found an online support group FULL of amazing families who offered hope, guidance, and support. Through them, I found little Cobyn Criner (whom also had hydranencephaly) and his grandmother Regina... they became my lifeline and helped me fight to get Brayden what he needed. That shunt surgery on August 5th ultimately saved Brayden's little life, I believe wholeheartedly that he would not be here if I had let the doctors push me around. Cobyn has since then joined the angels, but his life lives on in Brayden... they share a middle name and a great amount of strength. 










Brayden became a whole new different baby after surgery, more alert and more interactive, so I knew that I had made the right decision.


The first year, absolutely the most difficult year of my life ever!! We battled doctors, switched doctors, moved half-way across the country to South Carolina, started early intervention, and started some serious research efforts. There were no answers, everything was so very unknown and that was the worst. But there were so many wonderful things that first year too! Brayden's life, was ultimately the best, and personally I overcame such huge amounts of guilt and grief, finding myself able to enjoy him. The first few months, I cried more than I probably had in my entire life... it was nonstop, over the clothes he would never wear, the things he would never do, the places he would never see.
When he was 12 weeks old, my old employer held a fundraising golf tournament for him... hearing complete strangers talk about their sincere care and concern for him, their undying messages of support and belief in his little life, made me realize that I was focusing on the wrong things. The money from that golf tournament bought me a minivan, the first time I had thought about the future for Brayden when upgrading from my tiny Toyota Corolla with all three of my kids squished in the back. I'm not sure if Jeff Carroll and Bryan Peterson really know the impact their decision had on me, their choice to include Brayden in that fundraiser... but I'll forever be grateful to them.




The battle continued, every single day was a battle. Getting people in the medical community to be optimistic, finding people who even knew what hydranencephaly was, losing friends and family who just weren't sure how to act or what to say... holidays were weird for everyone involved, I always felt like Brayden was kind of excluded only because he wasn't supposed to be and he wasn't exactly developmentally in line. Gift-giving was hard... 




That all got easier, most of those feelings were likely my own insecurities. In fact, after going against much criticism and putting Brayden's life details out for the public to share in, he had love and support from people we will never meet. Through all of the love and support, Brayden celebrated his first birthday!






Then his second birthday!!




And now even a third birthday!!



We have have been so fortunate to not have faced many obstacles. Don't get me wrong, to the average parent they may seem like devastating circumstances, but to me they're just life as we know it. After a short stint when he was about 4 months old with the antiseizure drug Phenobarbitol, for eye-flittering, it was determined that this flittering was not seizures rather weakened eye muscles which brought him his first pair of infamous spectacles to also help with a severe astigmatism.


























Eating has always been a bit of an issue, mostly because the doctors were so set on him needing a feeding tube that they would not help me help him to eat. Thankfully for an amazing occupational therapist, Courtney Jerrard, we worked past those through therapy exercises and a transfer from a bottle to a cup. Now, Brayden loves his food, but not from a lack of trying to give him the nutrition and fluid intake he needs to stay healthy in the amount of food he does eat.
In July of 2010, Brayden had his first hospital stay while we were on vacation visiting our family in Missouri, prompting his diagnosis with Reactive Airway Disease. This was the hardest obstacle to face since the shunt surgery, watching him choke and not be able to breathe was gut-wrenching...his sweet smile replaced by blue lips, beyond scary! After that diagnosis, it actually took a few doctor visits to finally get the equipment at home that we needed to prevent future hospital stays. Respiratory issues remain one of his biggest problems, though we are able to wade through them much smoothly with a home nebulizer and pulse oximeter at home.


Doing extensive research on hydranencephaly is a blessing and a curse all in one. A blessing since I know what to expect, yet a curse since I also worry more than I could. Yet this research, along with the help and guidance of my "hydran-family", has helped Brayden reach the best quality of life possible in a world that wouldn't even lift a finger to help him achieve that. We joined the other little miracles in battling constipation issues, that had actually existed his entire life but went untreated and undiagnosed until he was 2 years old. His second year also brought a formal diagnosis of focal complex seizures and severe mixed spastic quadreplegia cerebral palsy. In a flurry of seizures, which proved him to be in status epilepticus in April of 2011, we also added on tonic-clonic seizures and the Lennox-Gestault diagnosis was tossed around but not written. 
His next hospital stay is a planned one, for adductor tendon release surgery on August 1st to hopefully prevent his hips from becoming completely dislocated and causing pain. Surgeries are always scary, even more so with a little life that is already teetering on the edge.

Despite all odds against him, Brayden inspires and motivates everyone who knows him to be a better person. He has friends near and far, his smile lures them in with its irresistability. He continues to have physical and occupational therapies, even starting preschool in February 2011... which was never a reality for me, to be sending him to school. 


He has explored more of US than many other 3 year olds... visiting family in Maine, Connecticut, Wisconsin, Missouri... living in Missouri, South Carolina, and Virginia. He has gone hiking up to water falls, rock climbing over streams, strolled around Washington D.C., chased his sisters around amusement parks, bathed on beaches, splashed in the ocean, spent hours watching fish in the aquariums, been in awe over blooms through botanical gardens, stumbled upon alligators in the swamp lands... he's done so much and will always do everything we do.


In between the fun, he endures doctors visits weekly, a mommy who feeds him weird things to hopefully keep him healthier (I'm all about alternative medicine and holistics over pharmaceutical/medical interventions), nasty comments and stares from ignorant people, occasional hospital stays, and manages to smile through it all. Though it is likely he is simply not aware of the difficulties he faces, he is completely aware of the love and support he has... he proves that by being a spoiled rotten momma's boy!


He also possesses the greatest amount of motivation I have ever seen in a child. Though he cannot walk, or even sit unassisted for long periods of time, that doesn't stop him from trying. 
He cannot talk, but is learning to sign "more" "eat" "drink" and some others, and will "tell" you that he doesn't like something... He communicates via a switch at school, a skill he hasn't mastered but is making obvious progress. He doesn't always see well, but he always recognizes those faces, places, and things he loves...
Every second of every day is a moment we were not supposed to share, thankfully we've been able to enjoy them together. Though his prognosis never changes, he no longer hangs on to a medically subjected expiration date. He breathes, he eats, he laughs, he loves, and ultimately he LIVES. And his little life will touch others as long as he is on earth... even well beyond, through this foundation in his honor.

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