Rough Go

It's been a rough night tonight and it's only 11 p.m.

Right before Chris woke up from his nap this afternoon I noticed his hands twitching and then when he woke up he was very fussy, which usually he wakes up and is a go getter. He had his pH probe removed and looked like an amazing baby! :)

They placed the NG around 5 and had a difficult time doing it because of swelling, they think, and had to put a bigger tube in than they wanted to. He finally got it placed and then had to put the restraints back on. He had about 20 min of freedom before where he took a bath and enjoyed being able to use his arms! :)

He is on 1/2 strength feeds 24 hours a day because they aren't sure of the refluxing yet. It hasn't bothered him and should the feeding tube have to continue, it sounds like it may change to bolus feeds if no reflux is present. My gut feels a g-button coming on.

Shortly after the NG placement we found out we were going to get our sleep study tonight and I could have jumped across the room and kissed the nurse. This is the test that Dr. Goebel has been wanting and she will be ecstatic when she gets back tomorrow and comes and talks to us.

The downside was hooking him up to the wires. For the most part he just sat there and whimpered, but when it came to laying down he just laid there and cried. He cried so hard that it moved the tegaderm that was holding some of his wires in place. I hate the way he looks right now. He has his NG, O2, some sensor in his nose, a probe on his cheek and he has bandages around his head again.

Tonight he also started running a temp. Not major, but we Tylenol'd him to prevent seizures. He just hasn't been himself all day. He will smile for pictures, but for the most part he's just not himself.

Tonight was hard and Jason and I cried at the side of his crib because he's hooked up to all this stuff and you can hold him and comfort him. The only parts I could touch were his nose, his hands and his feet. I completely understand when I hear about other moms of other children talk about not being able to hold their children. It sucks and mine is only over night...I can't imagine for days and weeks on end.

I shared with one of our favorite nurses, Sarah, tonight that I didn't feel like everything was kosher. She said she'd keep an eye on it and it could very well be my exhaustion. I've been back and forth with Jen as well and she is anxious to hear all the results.

My mom, dad, sister, brother in law and boys go home tomorrow adn I'm not looking forward to it. I haven't got much time with the boys since there has been so much going on with Chris. I can tell it is bothering Drew and when all is said and done, he and I will get to do something fun by ourselves.

Tomorrow should be a better laid out game plan and I am hanging on to the hope that we will be home Tuesday. I know we are where we need to be, but I still want to get home and I can guarentee you there will be a big slumber party when I can have all 3 boys under one roof.