Exhausted....

Reader Warning: This is a negative post. People always comment that they're happy for a positive post but this is just the way it is--sorry.

There is no other way to say it, Walter and I are simply exhausted. Last night Isaac screamed from 10:00 p.m. to 2:00 a.m. Next week is Isaac's first birthday and I'm so excited but I'm also discouraged because there was so much hope in mind for the changes we would see by April 13, 2011. I'm trying to focus on the good things, the things that have changed. He's happier during the day; he can get around on his own; he's starting to entertain himself; I can walk out of the room without him screaming (most of the time); he's loving and strong and brave for his little self.

But I'm exhausted. This past year has been the most draining year of my life. During Isaac's first hours we feared the unknown as we knew there was a birth defect but didn't know yet what that meant. In his first weeks we anticipated the CT scan which would show if his brain was okay. Then we waited until the neurosurgeon and plastic surgeon made their final recommendations for surgery. Then for six months we tried to forget about the pending surgery and just live. We prayed. A lot. We cried. We held him a little closer each time because we knew what he would endure while he was still so tiny. We prayed that if it was God's will he would be healed and we prayed that if it was God's will he would come through the surgery. Once the kids were in bed, Walter and I would lie in the darkness and share our fears with each other. With each month before the surgery, the thought of handing him over became so much harder--he was getting a personality, smiling, and we were falling in love with him.

Then we spent twelve hours knowing that our son was in God's hands. Then we spent twelve more hours watching him fight the breathing tube. Then four days waiting for him to nurse. And then five days blown up to twice his size on fluids.  During those four days we waited to see what taking the bandage off would reveal. Though the results were good, I spent a month trying to get used to my changed baby. Two weeks were spent cleaning the incision and applying ointment. Days were spent crying. We were so thankful though. And we prayed.

Not only did I feel disappointment with his head and the fact that I no longer felt connected to my baby, but he still screamed...all the time. Why didn't the surgery make it better? I still don't know.

Then we waited to see if he would need the helmet. Yes, he needed the helmet. Then we tried to get used to the helmet. I hated it.

Then he stopped growing. Still screaming. I was told I just needed to be tougher on him. He depended on me too much. Let him scream. Dumb doctors.

Not pooping. Why can't anyone just tell me why he doesn't poop? He needs to gain weight. Nurse him more.

Finally, some good news--the plastic surgeon was thrilled with the results of the surgery! Still not growing. Might need a G-tube. Nurse him more. Give him a bottle. Feed him solids. Give him formula. Don't you think I've tried all of that!? Still screaming. Not sleeping. What do I do? Will someone just tell me what to do? More doctors. Lactation consultant. Dumb GI doctor. Feeding Clinic. Lots of phone calls. Lots of dumb music while I'm on hold. More doctors. Blood work. Good GI doctor. Medicine. Medicine not working. Why is he still screaming? No sleep. Developmentally on track. Finally gaining but not enough. That's okay, we'll take it.

He's happier during the day but why is he still screaming?! I don't know. Maybe there's no explanation. Maybe that's just who he is--I hope not. More praying. Please, please just let him sleep. I jump when he wakes up and my heart starts racing. We never know if he'll go back to sleep after nursing or if he'll just scream. Please don't let him scream too long. Tell us what to do. We just don't know what to do. On bad nights he screams for three hours or more. It doesn't matter what we do. I cry. I want to run away. I don't want my own baby near me. Walter tells me I'm doing a good job. I don't feel like I'm doing a good job. He tries to help but there's nothing either one of us can do. Should we have the CT done? I don't know. Should we see __ doctor? I don't know. I cry. We try not to get mad a Isaac. We hate that we take out our exhaustion on Isabella. I know I've already said it, but we just don't know what to do. 


Tired of talking about Isaac. Tired of complaining. Tired of not knowing what to do. Tired of being tired of my baby. Tired of nursing. Tired of looking like crap. Tired of not caring what I look like. Tired of drool. For almost a year I've been looking forward to his first birthday. Surely a one year old wouldn't scream for hours in the middle of the night. Surely a one year old would eat food. Surely a one year old would sleep a little bit more. Surely a one year old wouldn't sleep in a bouncy seat.

Today Walter said that maybe by the time he is two it will get better.