Huxleys Story

Here's our beautiful boy just a few days after he was born. 

Seeing as this is the first post, I suppose I should start at the beginning. The intent of this blog is to give family and friends an opportunity to follow Huxley's journey and for us to be able to raise awareness about hypoxic ischemic encephalopathy and cerebral palsy. 

Huxley was born at home on June 11th 2014, after an uneventful (and what I consider empowering labour and delivery). He didn't give a big cry or 'pink up' like our midwives would have liked so the decision was made to transfer to the hospital. Huxley was delivered right up onto my chest and then was almost immediately given oxygen while still on me. You can imagine the overwhelming feelings of both fear and joy flying around the room. Our birth team remained very calm during the whole process. Huxley and hubby went first via ambulance to the hospital and I remained at home until I was able to be stitched up and transferred. 

A change of scenery: 

Once at the hospital Huxley was brought to the NICU (Neonatal Intensive Care Unit) where the team there tried to figure out what happened to him. I was not able to see Huxley until 5 hours after he was born. (I wasn't able to hold him for another 24hrs). Those were the longest hours of my life. When we saw Huxley all covered with wires hooked up to monitors he was very rigid and was screaming out. I sat there singing to him to try and make him feel safe. It wasn't until a few more hours that Huxley began to have seizures, it was too late for a 'cooling' treatment that can stop swelling of the brain and can stop further damage from occurring. The Dr's still didn't know why Huxley was having seizures. A few days later a neurologist ordered a MRI to help explain the seizure activity and to give us an idea about what was happening to Huxley. His tone was still abnormal and his suck and swallow was weak. I don't think I've ever cried so much in my life. I was in a perpetual state of shock all swollen and snotty. My poor amazing husband stayed so strong and that strength continues to propel me forward. My mum, doula, and best friend also need a 'shout out' because they sat with me day in and day out while I held my beautiful boy and tried to breastfeed him. I will be forever grateful to them, Oh man. The day the neurologist read out the MRI report out to us will be burned into my memory for forever. It was an awful day. She sat there and very clinically told us that our boys brain was damaged due to a lack of oxygen she suspects from intermittent cord compressions that happened some time during labour or maybe even during pregnancy. This was happening to our sweet angel and was totally undetected despite regular monitoring. A freaky thing that no one ever thinks will happen to them. 

So there it is. A diagnosis of hypoxic ischemic encephalopathy (which is a fancy way of saying that he lost oxygen and it caused damage to his brain), around two is when they would official diagnose him with cerebral palsy. We were in denial for a while but we know its coming. Every day I get a little more comfortable with it. 

We spent 16 days in the NICU, Huxley went from a NG tube for feeds, to a bottle, and then eventually to the breast! That was an incredible day. After Huxley was able to take full feeds from me they let us take him home. Home to a world full of unanswered questions, fear, and excitement about the future. I was so stressed out that I broke out in a full body rash and my immune system took such a hit that I caught hand foot and mouth disease. Not. Fun. 

Fast forward: 

Huxley turned one two days ago! This has been a ridiculously challenging year. Huxley tries so hard everyday to sit, crawl, walk, and coordinate his hands. The damage is in the area of his brain that controls motor function. He is so determined, he's spunky, he's sweet. He's our amazing boy! He loves music, going for walks, he lights up a room with his smile. He's a little explorer of the world and we couldn't be more proud! 

Thanks for reading and stay tuned for more on our story and our adventure as it progresses :) 

xo