Over two months had passed since Parker was born. He was not having seizures, growing like a weed and lighting up every life he touched. The only thing we really struggled with was the fact that Parker had crying episodes most every night, for about 3 hours. We wrote it off as colic and dealt with it the best we could. This started at about 6 weeks and to date, still happened until he was about 7 months old.
Unless you've had a colicky baby you have not lived. Our nights consisted of playing hot potato, only with a baby and no tossing is involved. We bounce and rock and sing and talk. We've tried everything out there and really the only thing that works is bed time or the sound of a bath. Strange, but true. This child is the next Michael Phelps, but hopefully without the drug incident...hmmm. yeah definitely without that.
Parker LOVES the water.
At around 2 months old Parker was already holding up his head while on his tummy. It was amazing! He was so strong. I had not a doubt in my mind that baby would be sitting up and holding that head early in life. Brain Damage - year right! I took him for his 2 month wellness check up and got smacked in the face with reality again. The "Problem Solving" area of the milestone checklist was a big ole fail. Parker wasn't doing ANY of those things. He could not follow with his eyes in any direction, he would not move his head toward sound, and he certainly wasn't grabbing at objects that were dangled in front of him. I was worried to say the least.
Because of Parker's rough start it wasn't a shock to any of us that he wasn't able to do these things just yet. Our Pediatrician recommended to watch him and discuss it with the Neonatologist at our next visit. Maybe she had some ideas. He thought it was maybe something to do with his vision. I told my husband if we get out of this whole brain damage thing with a vision problem we are very, very lucky!
It was at that appointment that they measured Parker's head. It was nearly 17 inches at 2 months old. When he was born it was 13 1/2 inches. Wow, this kid had a big head! But so does everyone in my family so maybe it's normal. There was that word again, Hydrocephalus. This time, it stuck in my brain.
At home it became a normal routine to measure his head. I couldn't get rid of this bad feeling and quickly started researching Hydrocephalus. I even made my husband call the doctor's office with a head measurement because I had myself convinced he had this condition. At this point there weren't any worries medically so I tried as best as I could to dismiss it. Yes his head was large, but it was still following the curve. I just couldn't get this Hydrocephalus condition out of my brain, though. My biggest regret is not getting an ultrasound of his head or a MRI. I should have demanded it. After all, everything I had read recommended it. His fontanel (or soft spot) was still soft! Let's do this! As parents we had been through a lot of scares already and were more than likely reading into it. After all, the only symptom he really had was a big head.
I remember countless conversations with my very patient cousin about how I felt something was off. I told her one evening, in complete tears, that I knew he had this condition and no one would believe me. I promised myself that if his head grew to be 18 inches I would do whatever it took to get him seen. Sure enough, a week later, his head measured 18.5 inches. I freaked out and lied to the doctor's office saying I thought he had an ear infection in fear that they wouldn't see me if I just gave them a head measurement again. I KNEW he needed to be seen. I also had to admit to my husband that I was a closet measurer...
His fontanel or soft spot was rubbery. It was never bulging out of his head. He never projectile vomited. He was fussy, but only at night and that's colic right? By time I had taken him in he was probably sleeping more than he was awake and in hindsight that is terrifying to think. When he would sleep, he only wanted to do so in his swing, up right. Our pediatrician was out and I spoke with another doctor. I immediately broke down and told her that he had Hydrocephalus, without a doubt, and I needed help. She listened to me and went well beyond the call of duty to help me. I owe her my life for saving my son's.
At the end of the day a lot of phone calls were made and who knows if messages were ever received at the university hospital's end. No one ever called me back like they promised the doctor and we discussed best options for us at that point. Around noon that day I asked my dad if I would be completely crazy to drag my family to the University to get a MRI. He said to do it and then we'd all know once and for all. I talked my husband into taking Parker to the ER at the University hospital because I knew they wouldn't and couldn't turn us away. I knew we would go there and they would HAVE to treat us. I also told my husband to pack a bag because I knew we'd be there for a while. So, we cut a lot of corners and did not wait for a call back for an appointment or consultation. I knew in my heart that we did not have time for that.
1 hour after being admitted to the ER Parker was diagnosed with Hydrocephalus.
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