You might remember the term HIE(hypoxic-ischemic encephalopathy), otherwise known as oxygen deprivation. Basically that means that for a period of time before Miller was born his oxygen supply was cut off therefore causing injury to his brain. HIE does not go away, it is a permanent condition of the brain. We have no way of knowing exactly when it happened. Now HIE can happen after birth but the way Miller's HIE presented it was pretty clear that his injury was prior to birth. Miller was very blessed in the sense that a lot of babies born with this injury can have organ failure, but he didn't. In fact at birth he presented fairly well, he was only taken to the NICU as a precaution with his lungs.
The only sign and the way we found out that anything was amiss came a few hours later when I was holding Miller for the first time. I looked down at him in my arms and something seemed off. I can't even really remember exactly how it looked, but I knew right away. "Is he having a seizure?". The neonatologist took a look at him, and said no and that it was normal newborn behavior. I didn't even think about it later, taking what he said for face value.
Fast forward to the next day, we were taking my aunt and cousin back to see Miller. We had just entered the NICU when the same doctor from the day before rushed over to us and asked if he could talk to us in private for a minute. It turned out it was a seizure. They knew because he had a few more that day. I was shocked. The whole pregnancy I had been concerned about him even getting the chance at life, I never even thought about this being a issue. I thought once he was out I could breathe easy.
They called in the pediatric neurologist and ordered a EEG and a MRI. Over the next few days it was confirmed, it was HIE. The big concern at that time for getting him home would be feeding. That was his biggest hurdle. For the time being he had a NG tube(a feeding tube that goes through his nose), but he couldn't go home on a NG tube. The feeding specialist started working with him on his feeds. Unfortunately that was one of the areas that his HIE had affected. His swallow was out of sync causing silent aspirations after 7cc. After 2 swallow studies that had the same results it was finally time to make the hard decision to allow them to put a G tube in which would require surgery. After that it was just a countdown to home.
When I look back at Miller's time in the NICU it feels like another life entirely. The worry, the waiting, the what ifs, the second guessing. I remember the agony of knowing that if he had presented as severe(which his HIE presented severe on his MRIs) he could have had a cooling cap that has been used in the last few years to help babies appearing to have HIE hours after birth. I can recall waiting for him to come out of surgery strangely calm, then as soon as it was over questioning whether it was the right choice, even though the hospital said I had no other choice.
I share this all because of the other parents that are maybe going through this right now, or have gone through this. Because I can remember sitting there in the hospital Googling every medical term I heard, reading every blog written by a parent who went through this. If we don't talk about this, who will?
|Waiting for Miller's arrival!|
|Miller James is born!|
|His 1st picture in the NICU|
|The 1st time I held Miller|
|Chillin' under his bilirubin light|
|Headed for another test|
|His 1st Halloween was spent in the NICU, he also turned 2 weeks old that day!|
|Miller headed for PCN(Progressive Care Nursery, it's a step down from the NICU) the 1st time!|
|Right before his G-tube surgery|