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 be fine after a little while. I called his doctor, who is simply amazing, and she advised to call neurology and GI in the morning. I called them both and neurology advised to go to the ER as they want to observe him for seizures to see if that is what is causing these episodes. They said we could go to the local ER and if they thought they could handle it, we could stay there but likely they would transfer him to Madison so it might be better for us to go straight there. I went into full fledged freak out mode. I immediately called the clinic and talked to his doctor to see if we could to go the local ER. She advised me to take a deep breathe and then go to Madison.
They hooked him up to an EEG, which he hates getting that thing on and off, and kept him overnight to monitor him for seizure activity. This sucked. It was scary and exhausting. We had great nurses though and our nighttime nurse asked to feed Bren during his midnight feeding so I could get more sleep. She was an awesome blessing. The morning came and the neurology team came in and told that Bren had his best EEG and he is completely seizure free. They told us they believe these silent coking episodes were likely reflux related. They also told us they did not expect Bren to be doing everything he was doing at this point.
That news was bittersweet. Yay for no more seizures but how on earth do we get this reflux stuff under control? GI put him on a new and stronger medicine to see if that helped. It didn't, in fact Bren was far more miserable on that medication than he was when he was silent choking. So back to the old stuff we went.
Month three is where we really started to see the struggle and fight we would have to put up with. Drew learned the hard parts of advocating and I learned how to advocate as a mom and not a social worker. We learned how to take what the doctor's say as suggestions but at the end of the day, we are still the parents and we need to do what is best for Bren. We were reminded time and time again that we know Bren best. Taking doctor advice with a grain of salt was hard for me as I like to listen to experts and do what they tell me. I really had to learn that most of his doctors operate under a set of statistics that Bren may or may not fit into. By the end of month three we saw that he was not just another statistic and that he was determined to prove doctors wrong. We praise God for all of the things Bren is doing. We know God has bigger plans for Bren than what the MRI shows.
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 be fine after a little while. I called his doctor, who is simply amazing, and she advised to call neurology and GI in the morning. I called them both and neurology advised to go to the ER as they want to observe him for seizures to see if that is what is causing these episodes. They said we could go to the local ER and if they thought they could handle it, we could stay there but likely they would transfer him to Madison so it might be better for us to go straight there. I went into full fledged freak out mode. I immediately called the clinic and talked to his doctor to see if we could to go the local ER. She advised me to take a deep breathe and then go to Madison.
They hooked him up to an EEG, which he hates getting that thing on and off, and kept him overnight to monitor him for seizure activity. This sucked. It was scary and exhausting. We had great nurses though and our nighttime nurse asked to feed Bren during his midnight feeding so I could get more sleep. She was an awesome blessing. The morning came and the neurology team came in and told that Bren had his best EEG and he is completely seizure free. They told us they believe these silent coking episodes were likely reflux related. They also told us they did not expect Bren to be doing everything he was doing at this point.
That news was bittersweet. Yay for no more seizures but how on earth do we get this reflux stuff under control? GI put him on a new and stronger medicine to see if that helped. It didn't, in fact Bren was far more miserable on that medication than he was when he was silent choking. So back to the old stuff we went.
Month three is where we really started to see the struggle and fight we would have to put up with. Drew learned the hard parts of advocating and I learned how to advocate as a mom and not a social worker. We learned how to take what the doctor's say as suggestions but at the end of the day, we are still the parents and we need to do what is best for Bren. We were reminded time and time again that we know Bren best. Taking doctor advice with a grain of salt was hard for me as I like to listen to experts and do what they tell me. I really had to learn that most of his doctors operate under a set of statistics that Bren may or may not fit into. By the end of month three we saw that he was not just another statistic and that he was determined to prove doctors wrong. We praise God for all of the things Bren is doing. We know God has bigger plans for Bren than what the MRI shows.
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