Cayman's Head

Cayman's head looks to us like it might be a little better. If you remember from an earlier post the Neurosurgeon said the shunt was draining the fluid so quickly it was making her head dip in the front and the back skull bones come forward and overlap the front ones. It's not a big change, but it does seem to be a little better. The dip at the front of her head seems to be less steep. So hopefully the shunt is finally balancing the fluid drainage as it should. I really don't want her to go back to surgery soon. We see the Neurosurgeon on Thursday so we'll find out what he thinks about it compared to what it looked like last week.

Today has been the first in the last couple days that Cayman has not been fussy almost constantly. I think it was her belly. I'm not sure if I ate something that got in the breast milk that could have made her not feel well. I had a burrito that had some onions on it. I don't really know much about this stuff so I don't know if that could have made her not feel good. I had not gotten much sleep because the only thing I could do to sort of calm her down is hold and rock her and Daddy has been at work. My mother-in-law came down early in the morning (around 6 a.m.) and held her to give me a break so I could sleep. Last night Cayman seemed to feel a lot better. She only fussed from 2 a.m. to 4 a.m. I know 2 hours must seem long, but it didn't feel so much since the 2 nights before she fussed off and on the whole night. She had so much gas and whenever she would pass it or poop she would be better for a bit, then it'd start all over again.

Cayman has been eating only by bottle for, I think it's been 4 days now!! She's eating so well and has turned into quite the little piggy. She eats even more than she did through the G-tube. She was taking in 66 ml, and now she eats anywhere from 70 to 80 ml's by mouth. What a big difference compared to when we first brought her home from the hospital she would only eat 15 ml and it would take her 20 minutes to do it. I am able to get more rest now since we don't have the G-tube feeding step. We see the Pediatric Surgeon one week from this Monday and I am REALLY hoping he will say she no longer needs the chimney part of the G-tube. That will make A LOT of Cayman's care so much easier. Having to keep the chimney suspended above her and making sure to not let it get caught on anything so it doesn't tear the G-tube out of her belly has made everything more challenging. I've gotten good at handling her independently. It use to always take 2 people to move her just because of the chimney. One person would unhook the suspended chimney, while the other person picked her up, then we'd move together making sure not to let the G-tube become stretched, and then sit down with her, and hook the chimney up to the post-it board stuffed in the cushions of the couch. I have figured out how to move her by myself. Try to picture this as I describe it. When she's laying in her bassinet, I lean over, unclamp the chimney and hook it to my clothes around the shoulder area, keeping myself bent close to her so the G-tube isn't being pulled. Then once I have it hooked to myself I pick her up, sit down on the couch, set her bottom on my lap, hold her head with one hand, grab the boppy with the other, tuck the boppy under her, lay her on the boppy against me so I can have two free hands to unclamp the chimney from myself and hook it to the post-it board that I already put in place in the cushions before I picked her up. Then once I am in this position, all settled in, I try not to move for awhile. To make that possible I put a TV tray set up next to the couch that has everything on it that I need: her diaper changing supplies, nose bulb sucker, tissues, water, hand sanitizer, TV remote, telephone, etc. To change her diaper I just keep her on my lap. I've gotten good at changing her like that too. I always slip a clean diaper under her before I remove the dirty one just in case, so if she does decide to potty some more I don't have to figure out how to get up and get both of us changed. Even though this whole process is more work just by myself, I love being able to take care of my baby independently. I don't know if that's a "mommy-thing" but it helps me out so much emotionally knowing I can take care of Cayman without always needing someone else there to help.