Too Hard

How different a post from this morning. Simon is still stable and his stats aren't any different but F***'n A, the ups and downs are really hard.
He started to pull on his jugular line again and Maria (tonight's nurse) and I worked for about an hour taping the shit out of the little man. Once again I was holding my son down while he cried and used every sad angry pissed off expression he knew how to let me know that this was something that he hated. Again, there's that impulse in me to rip out all the lines, scoop him up and just wrap him in my arms take him home and stay in the shower with him for days to wash all this away. Since I can't do that and he's not going to be better anytime soon the impulse then is for me to run and simultaneously hate myself for wanting that. Holy shit this is hard. Hardest thing ever.
How do you handle this for 4-6 weeks? (That's the newest timeline). I mean, I know how. I know that there are more ups and downs to come and it's the ups that feed you and taking care of ourselves is so important. And with the downs, I have to lean on folks that are here and cry and know that it's a marathon. Yeah that.
Simon is resting now and we're going to keep in his bed and just do a bottle feed tonight so as to avoid the disruption of transferring him from the crib to my lap. With so many lines coming out of the sweet little boy it's hard to reconcile the bliss of having him at my breast with moving him and the risk of dislodging his jugular line.
Tonight the risk wins out and we bottle feed. Tomorrow, we'll see. It's so clear that he loves being back on my boob and it's so good for both of us. We'll see.

Thanks to all for reading and sending love and light.