Wednesday, April 23, 2008

My Middle Mann - Part IV

I brought him home and began the arduous task of trying to understand what all was really going on with my baby. He had doctor's appointments just about every day to follow up with neurologists, developmental pediatricians, and neurosurgeons. When he didn't go to the doctor because of some preventative reason, he was at the doctor trying to figure out why he was so fussy.

He cried all the time. Not a normal, baby needs to cry, kind of cry but the kind of cry that makes even the least affected person want to throw whatever is closest in an effort to make it stop. If he wasn't nursing, he was screaming. Sleep didn't seem to happen for this little guy. Just screaming and eating. Eating and screaming. Hour after hour after hour. Week upon week upon week.

The doctors didn't have any idea why, except that he had such significant brain damage from the bleed in his brain he'd suffered about 4 weeks before he was born.

His massive brain injury occurred while I was pregnant.

I'd been garage sale-ing one warm Saturday afternoon in May in the neighborhood next to my parents. I was walking along with my mom and my Sweetie when suddenly, I dropped to the ground in pain. It took a couple minutes for me to catch my breath. When I was able to stand and then walk again, the baby had dropped and I suddenly had more room to breathe. Something wasn't quite right the rest of the pregnancy. It was terribly uncomfortable. It actually felt like the baby was crooked in there. And the hiccups? Oh how I wished they would stop, but they were pretty constant for the whole last 4 weeks.

I talked to the nurse and the doctor about it and they both told me not to worry. That everything was different with every pregnancy and just because it didn't happen last time doesn't mean it's not perfectly normal this time.

After about 6 weeks of the constant screaming and the daily trips to the pediatrician, I was given a new medication for my little guy. It was to help him sleep. So that he could rest and grow and so that I could a little too. I found out about 7 years later that it was a terribly outdated form of sedation and also that there is no reversal agent for it. Good thing he kept waking up screaming!

I gave him the meds about 3 times a day so he could sleep about 12 hours. It worked that well for about 3 days. Then the number of sleeping hours decreased slowly until he was only sleeping about 4 hours a day. I took him in for some developmental testing when he was about 10 weeks old and they suggested I get a swing for him. One of the sweet battery operated ones.

We went through 3 sets of 4D cell, 100 hour batteries a week for a few months. I know. It's a lot...But! He was able to spend some time awake and not scream during the day and that hadn't happened at all before then. It was a MAJOR improvement. He swung day and night. He would sleep there during the night for a couple of hours at a time. I slept on the couch right next to the swing so I could grab him and try and soothe him as soon as he would wake.

It was a nice change to have the start of a schedule. I was so glad to be living with my family during this time. They helped me so much with my Sweetie and she came with me to all of her brother's appointments, everyday, and was always perfectly behaved. I honestly thought that was normal behavior for a 2 1/2 year old. Little did I know, she was already going on 30 even at that young age.

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