Two Steps Forward, One Step Back

Another big day in the ICU. We're back in the Annex in our luxurious bay #22 complete with picture window and while it was so exciting to be "wireless" for a while, it was not to last. I came in this morning and had a delightful two hours with Shimmy walking around his bed, dancing, looking out the window, rubbing heads, and just loving not being concerned with tubes. During rounds though a couple of things came up and Simon needs to have his PICC line reinstated and go back on Heparin. His Cumiden levels were not quite up to snuff (that's the oral substitute for Heparin that thins the blood so it can be pumped easier) and the PICC is also an essential piece of equipment on the off chance that Simon's heart gets tired again.
So Toshi was called and I started to feel nauseous just thinking about the 4 hours it took last time to get the fucking line in. It didn't help that at just about the same time all this was decided it was spoken out loud that Simon is in fact still a "very sick baby."
Right. He is.
He's presenting so normal, even better than normal with the turning pages in a book (see video), the more smiles that he's giving, and the new chunkiness he's sporting in his midsection and thighs.
And...he's still weak of heart and not able to sustain his high spirited self without major intervention.
When Toshi came by to do the PICC Simon was fast asleep and that was the condition that I got to hand him off in which was great.
I got a call less than 20 minutes later saying that the line was in and I could come back up and nurse him and gavage him. I was amazed that it took such a short time. When I got back upstairs I was surprised to see his head still free of a line. Meghan the nurse looked a little sad when she saw me and delivered the unfortunate news that Toshi couldn't get the line in but mercifully decided to stop after just two tries. They got a shallow line in to his arm which is a good thing but will be trying to get a PICC in asap which is a crappy thing. It's good that they got a line in because they can start him on the Heparin again which he needs AND when they try for the PICC again they can give him some sedation to make the process a little easier for him (although last time they did the PICC little SHimmy was way pissed and showed it even though he was on at least two doses of different sedatives). The bad news is that they're planning on trying first thing tomorrow and that means that the little man can't catch a break.
My plan is to advocate for them waiting at least a day so that we can space out his more traumatic moments. The nurses say that the shallow line will last at least a day or three and that if need be you can administer Milrinone through it as well a Heparin (the two drugs that he would need to be getting should his status deteriorate). If that's the case then why not wait a day or two before we need to put him through another session of being poked, bled, and crazy out of his mind for possibly hours at a time??
Really, why not?
In other news, we're up to 65 visitors and every body that works here comments on how loved this baby is. They say that they've never had a baby held so much and I can't tell if it's with admiration or some annoyance that they comment "that boy doesn't touch his bed from 7:30 in the morning until 10 at night."
Jaime would like to retract some of the flippant comments regarding the butt hole-less baby. It's quite a bit more serious that we (and the mom) thought and if folks reading could also send some love to baby Brandon and his mom Coco that would be great. He's got a rough road ahead.
My mom and dad are vermont bound and it's been so amazing to have their support through all this. Shimmy had some great moments today soaking up the Fernie and Feileen energy. We'll be conjuring up the Poppa and Mmmmm all the time.
Nursing news: Simon is still challenged and is now liking the pacifier more than the boob. I'm trying hard not to take it personally and not freak out that he's missing out on vital calories. We only get one or two sessions in a day but so far he's still gaining weight at a respectable rate. Amrit says that this is not uncommon and when we're home again we can quickly get right back to it. It will also bring back up the dwindling supply which I'm also trying not to dwell on. Simon is still getting gavaged no matter what every three hours so he's not quite hungry when he's put to breast. And apparently nursing is work.
I never thought so. I leave it at that.
Friends from far away are visiting and it's wonderful to see folk. Hard that it's not a simple catch-up kind of visit but none the less wonderful to see dear friends. (Winter, thank you so much for the Wonder Woman under-roo show. Simon is going to have some odd fetishes when he grows up)

Love to all

Laura