Long Journey thoughts

The day has been a long one and while Simon is still stable and getting stronger on a minute level there are moments that are just frickin' hard.
This afternoon after Simon spent a wonderful hour+ in my lap napping he got his first bottle feed!!
He had five minutes to see how much he could drink out of 15cc's. Only five minutes so that he wouldn't tire himself out and only 15cc's as to not overload his exhausted little system. For the first 2.5 minutes it seemed like he had just forgotten what to do with something in his mouth. Then he started to chomp a little getting a few drops here and there. And then during the last 15 seconds he all of a sudden remembered that he likes breastmilk quite a bit and sucked about 10 cc's down in three strong gulps. Later today we'll up the amount and then give Little Shimmy some "recreational time on the breast." That might be my new favorite-est combination of words ever. Say it out loud. It just rolls off the tongue
That was a wonderful high point.

Then came the harder part. Simon's jugular line was being pulled taut and actually started to pull out a little and we needed to tape that F****er down so as not to risk needing to re-poke him. It took both Jaime and I assisting Margaret, another amazing nurse, several minutes of holding, taping, re-taping, maneuvering, and repositioning Simon to get a somewhat stable set up. I thought I was going to lose it by the time we were finished. I don't know that I can do that again. It just hurt my heart to be holding him down and causing so much pain and frustration for him.

My head knows that it was imperative but my heart felt torn from my body and I thought I might faint and/or need to run out of the room- something I never ever imagined that I would feel in connection with my sweet little boy Shimmy. Blech blech and double blech.

The shine from yesterday has worn off a little and there's more of the realization that we are just in for a very long journey with so many ups and downs in store for us. Our work is to relish and delight in the highs and try and move quickly through the harder times, being as present as possible for them and then looking towards that next chance to celebrate his indomitable strength and spirit.

Love to you all out there pulling for him.