Story of Gage. Our Schiz kid of the week

Gage’s Story

June 17th 2008, my husband Dustin and I welcomed Gage Rayden into the world. With an overall "normal" pregnancy we were excited to meet our new baby boy.....that was until we noticed something was wrong and no one was telling us what it was. Hours after my C-section they still wouldn't let us hold or even be in the same room as Gage, they kept telling us that he just wasn't thriving the way that he should and he needed to rest. We went the entire night without being able to hold Gage; no one had been able to hold him except for Dustin right after Gage was born. The next morning the pediatrician came in and told us that they were going to move Gage to the nearest children’s hospital, there was something wrong with our baby and they had no clue what it was. My heart sank, what could be wrong and what was going to happen to my precious baby?

The next few days was like a whirlwind, it seemed like years before we knew what was going on, but at the same time it seemed like things were moving so fast. After the first day of being at the University of Kentucky Children’s Hospital our nurse finally came in and told us that our son would need an open heart surgery, but the doctor would have to explain everything to us and he would be in as soon as he could. Dustin and I broke down, at that moment even though there was a room full of people it was like we were the only two people in the whole world. It was a lot to take in when the cardiology team and surgeon came in to speak with us. Gage had a severe Aortic Coarctation and multiple holes in the bottom portion of his heart; he needed open heart surgery ASAP. The next day, at just three days old our little boy would undergo his first of 2 open heart surgeries and his 1st of four heart procedures. It seems somewhat weird to me now the sense of peace I had in my heart that night after everyone left and things began to sink in. Looking back I believe that God had his hands on me that night and sheltered me from my fear of what could happen to Gage while the doctors had his tiny heart stopped. Gage's first heart surgery took over 6 hours, it felt like a lifetime! When they finally called to let us know that they would be taking him to the PICU we all ran down the stairs from the floor my hospital room was on to the hall where they would be bringing Gage down. I can remember that moment vividly, there were people lining both sides of the hallway at least 20 people standing there waiting to catch a glimpse of Gage as they brought him down. As I saw them wheeling Gage's little bed down the hallway the tears began to roll, there he was, doctors and nurses all around, and tubes coming from everywhere. No one is ever prepared to see their child in such a state; it broke my heart looking at my small child in such bad shape.

That night we stayed by Gage's bed as long as we could and returned from my hospital room first thing that next morning, when we got into the PICU his nurse met us and informed us that Gage had begun to have seizures in the night. They started him on Phenobarbital and scheduled him to have an MRI of his brain to see what was going on. Again I felt crushed; Gage had already been through so much!

Gage <3

PICU

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Since Gage was born he has had 2 MRIs and has been diagnosed with Bilateral Open -lipped Schizencephaly, with extensive stroke damage, and extensive migrational abnormalities throughout his brain. His current neurologist says that compared to his MRI Gage is doing so much more than they would expect him to be doing. God has blessed us in so many ways with Gage!
Gage has a rather large team of doctors some days I find it hard to keep up with them all. We see a neurologist and genetics doctor out of state at Cincinnati Children’s Hospital. We also see a cardiologist every few months, an ENT, and an eye doctor that we have to see every 3 weeks while we prepare for Gage’s eye surgery. Gage also has a wonderful group of therapist that have been with him since he was 4 months old, some of them were just interns when he started seeing them. We go to an outpatient therapy clinic twice a week and his therapist feel like family to us…they are just as excited as we are when Gage accomplishes something new and they freak out just like I do when he has a seizure. They have been wonderful in every way, without them I wouldn’t know half the things I do in some ways that have been more helpful than his actual doctors have been.
We have watched our child in pain knowing that we can't do anything to help him, we have watched him slowly develop and be passed up in many ways by his younger brother....Gage has been through more in his little life than most people go through in an entire lifetime, his journey will be a hard one and he will have to overcome many obstacles, but he has already shown our family and many others that miracles DO happen and just because the doctors say so doesn't mean that it will be that way. Gage's life holds a lot of uncertainty, but we will help Gage fight to the end in anyways possible because he is our shining star, he may be special needs, but he is no less than any of the rest!

party boy!

smiley boy

Brotherly Love
I have always worried that my other two boys would resent Gage for all the attention that Gage has required, but it has been quite the opposite. Everyday they amaze me at how much they love and care for their brother. Brett our oldest is like a mother hen, you can see the concern on his face at the thought of something being wrong with Gage even something like a cold makes Brett worry about Gage. He always tells us that he watches over Gage at school and goes by his classroom to ask Gage’s teachers how he is doing. Cruz is our youngest, 14 months younger than Gage, and Gage’s shadow. He has passed Gage up developmentally in many ways, but when he sees Gage struggling he will stop what he is doing to aid him. He does anything and everything that he can to help Gage, it touches my heart how much love both Cruz and Brett have for Gage. I believe that the interaction and help that Brett and Cruz give Gage has helped him develop in a way that has surpassed both the doctors and therapists expectations.