New Normals and a Crazy Awesome God

EEG. That acronym is one that I never want to hear again but will likely have to hear it a few more times throughout Bren's life.  EEG = Electroencephalography. Or I as like to call it, the thing that makes my child cry uncontrollably. When conducting an EEG, they have to put leads on your head. These leads require glue, lots of glue. They also require pressurized air. Bren HATES the sound of the pressurized air and he screams and screams while they put them on. Then when it comes times to take them off, he screams from them pulling his skin and what little hair he has on his head.  The EEG measures brain activity. Bren's would tell us if he was having seizures. I think that was the scariest thing. Finding out that my son was having seizures was scary and hard to deal with. I had no idea how to handle seizures. I knew there was medications but that as about it. I had no idea how to physically tell if my son was seizing. So in a way, the EEG was helpful, but I wish my son w...

Bren had quite the big month at 3 months old. He learned how to roll over. He started eating almost everything orally. Bren learned that he had a voice and that when he used it, he got attention. He learned to smile and laugh and by golly they are the best. He showed us that he was going to develop as normally as possible for a 3 month old. At three months old, Bren was experiencing reflux and abnormal brain activity. His abnormal brain activity essentially meant that he was predisposed to seizures. One week towards the end of month three and the beginning of month four, Bren was experiencing silent choking episodes. What I mean when I say that is, he was visibly trying to get something out but was not coughing at all. One night he passed out after one of these episodes. He wasn't breathing for about 30-45 seconds and I couldn't wake him up. It was scary. Gut wrenching scary. I was home by myself and didn't know if I should take him to the ER or not because he seemed to b...

I mentioned in a earlier post about the support we have received throughout this adventure. We've said it a million times and we will continue to say it, it takes a village to raise a family. And by golly, we have the best village there is. To our family- Thank you. You've been there for every phone call, every text, and every picture. You consistently check in on Bren(and us) to make sure things are going the best they can. Even though we mention how overwhelming your support can be, we really appreciate it. To our friends(who have basically turned into family)- Thank you doesn't feel like enough, primarily because it is not. You've made us meals, helped pay for medical bills, bought us gas, and coffee(lots and lots of coffee). You visit. You check in on us. You help care for Bren. You've learned the uniqueness of Bren and how to feed him. You've endured many rant sessions about medical decisions. You've sat with us through the tears and listened to our...

Most of Bren's first month was spent in the NICU. There was not a lot that was focused on during his first month. We got use to being at home with a newborn. We had appointments right away with his primary care provider, and by right away I mean the second day we were home. He had weekly weight checks but that was about as much doctor interaction we had, which was nice. We had lots of visitors, it was like Bren was a celebrity. Month 2 hit and that's when we realized the craziness that was going to be our lives. Bren started speech therapy. Which I thought was crazy, how on earth do you do speech therapy with an infant?! The amount of times I have been asked that question, only validates that I was not alone in my questioning. So let me tell you what you do in speech therapy with infant. The ST watches him eat. While she does that she is checking his swallow, his suck, and his lungs. The first few appointments, Bren was not able to eat from a bottle and so we did taste tria...

I’ve been meditating over Romans 5:3-5 over the last few months. Even in the midst of problems and trials God is so very faithful. Drew and I have seen God show up in big ways the last few weeks. And I would love to share with you how we have seen Him, so please ask if you are curious. Now, that doesn’t mean we haven’t felt anger, hurt, confusion and a mix of other emotions, but we have always been able to come back to these verses and know that good will come out of the hard stuff. We know how dearly God loves us. We know God will do big things with Bren’s life, even if it’s not what we expected.

The NICU. This is one post I wish I didn't have to write. And I suppose I do not really have to, but it is such an important piece to this story, that it felt wrong to leave it out. We spent 19 days in the NICU. 19 days. Those were the longest 19 days of my life. We arrived there just hours after Bren was born. He was started on a cooling treatment. This treatment cooled Bren's body down but the true intent was to stop any secondary brain damage from happening. Cooling treatment lasts for 72 hours. Bren was scheduled to end this treatment and start warming on Saturday morning. Bren had a rough time warming up and did not actually complete the treatment until Sunday afternoon. 4.5 days. That's how long the treatment took. That's how long it took for me to be able to hold my baby boy. You see, I wasn't allowed to hold him when he was cooling because holding him would allow his body to warm up too much. That was hard. Really hard. I couldn't hold and comfort my b...