I feel like I have been run over by a truck. I have been having trouble sleeping and when I do finally get to sleep, it definitely isn't restful. Last night, I finally fell asleep on the couch at around 1:20am. I had tried to sleep through out the evening, but it just wasn't happening. To say I am exhausted is a complete understatement.

Yesterday's procedures went as well as we could have expected. We got to the hospital at 6am to meet with the doctors and talk to the babies before their procedures. I knew that we would hurry up to be at the hospital on time (which meant a 3:45am wake up for us) just to sit and wait. They scheduled the time so you would think it would be reasonable to be there on time, right? Wrong. The first doctor showed up at 7:10. Figures.

Anyway, we spoke to the doctors about the actual procedures, asked questions, discussed post-op expectations, and signed paperwork. I felt as confident as I could have in the neurosurgeon. (Is it possible to be completely confident in someone who will be cutting into your babies' heads?) He had done the procedure many times--I asked--and would have another doctor in there with him while he worked on the boys. I was just as comfortable with the anesthesiologist as I was with the neurosurgeon.

They finally made us leave the NICU (it was a shift change and the cited HIPAA as the reason) just as they called for the travel isolette for Sh.awn. He would go first, come back, and then they would take Ja.son. We kissed them goodbye and went to wait.

And wait.

The neurosurgeon came in after Sh.awn's procedure to talk to us about things went. The procedure went well, but Sh.awn still had some old blood from his bleed left in the fluid from his ventricle. The doctor explained that it means that Sh.awn was having a hard time breaking it down himself and that it raised the risk of clogging the shunt. Just what we need. Another increased risk.

The neurosurgeon came back after Ja.son's procedure. Ja.son did well, his ventricular fluid was clear, and was being sent back to the NICU as we spoke.

We were back to waiting until both boys were situated in the NICU before they would "let" us back in to see them. (I hate that these people have the power to let me see the boys are not.)

When we finally got to see them, they both looked so small and quiet. Neither moved. Ja.son was still sedated from the surgery. Sh.awn had been given morphine to help with pain. Both had bandages on the backs of their heads and on their bellies. They both had breathing tubes down their throats again. It was so hard to see them there like that. It felt like all the progress they had made over the last several weeks to get off of those stupid tubes had been wiped away in a matter of hours.

The NICU doctors didn't want us to disturb them or touch them and made a big stink about it. God that was hard. I so wanted to just touch their little hands to let them know that I was there. Even if they were sedated, I just wanted them to know I was there and that I loved them. Had I been a little stronger emotionally, I would have fought them and did it anyway, but I was worn down and couldn't even think. I settled with putting my hand on the isolette near their faces and telling them I loved them through the glass.

They shouldn't have had to go through all of that. They just shouldn't have. It breaks my heart to think of all they had to go through.

We stayed for awhile just watching them sleep. I found a bag of Ja.son's hair on his isolette. I don't know why it didn't occur to me that they would shave their heads. I guess I didn't think things through that far. It was another jab into my heart. I had to ask if they kept Sh.awn's. Thankfully, they did.

We left the hospital at about 3:00pm, exhausted and raw. I cried a little on the way home. I hadn't let myself do that until then. Is.aac was quiet until we got home, and then started complaining of stomach pains and cramps. (I hope he isn't getting an ulcer or something.) He finally fell asleep.

I just sat on the couch absentmindedly watching television and staring at the walls until I was able to fall asleep last night. I worried about the boys. I worried about Is.aac. I worried about myself and my ability to take care of the boys in the way that they deserve. Thoughts jumped through my mind all night. It wasn't fun.

I called to check on the boys this morning, and both are still intubated (on breathing tubes). Neither had had food for about thirty-six hours at that point. We were told yesterday that they would be intubated for twenty-four hours at the max. When I asked them why they still had tubes, they circled the questions and evaded the answers. I went through two nurses (the boys have different nurses today), a fellow, and the attending before I could get anything out of them. I got changing stories and nothing was the same from person to person.

The attending said that this morning's x-ray showed that Ja.son had a partial collapse of the upper right lobe in his lung so he would probably be intubated for awhile longer. They didn't call us to tell us that and barely even mentioned it when I was talking to them. If I hadn't asked about it, they would have acted like there was nothing wrong. I couldn't get any answers as to why/how this could happen.

She couldn't really say why Sh.awn was still intubated. All she would say is that they don't want to rush him and that they are weaning him off of it. They weren't giving him any pain medication other that Tylenol and they weren't sedating him. They were just letting him lie there uncomfortable. I was all over that, too. It is ridiculous to do that to someone, especially a baby!

Any warm and fuzzy feelings I had had about this hospital--and there weren't many--dissolved today while I was on the phone. They will take care of my babies in a caring, professional manner. I don't care what it takes either. I had them write on the chart that I wanted to be notified for any changes, whether that is to their status, medication, or skin color. They are to notify me about any changes to the boys period. The doctor there when I go in today will be hating life. I am so upset that calling me a bitch from hell could be an accurate description. They will answer me and explain what is going on if it is the last thing they do!

And I will continue to push to have the boys moved to the hospital here. Stupid people.