Well, a bit more progress today. Simon is completely off oxygen and also now can breastfeed whenever he or Laura wants! He also is off one of the carriers for his IV so he only has one IV (the PICC line) with only 3 things going through it (Milrinone, Heparin and the carrier). He had much more alert time today and also squawkier time which is pretty normal.
Geraline, one of the nurses that hasn’t been his nurse but is often near us, had a dream about us all last night. In her dream, she was our personal nurse at home and she was going to have the great honor of giving Simon his first feeding. She got to go into a special room with a big throne like chair with lots of pillows and a very special bottle. She said it was SO vivid and we (including grandparents) were all in it. I told her she needs to start dreaming about a super strong heart, since today was the day he got to have unlimited feeding and she dreamed about his feeding last night. Pretty cool…
The doctors talked about weaning him down from IV Heparin (blood thinner) soon and maybe getting him on oral Cumidin soon. He’s off one of his diuretics and the other 2 are now oral since his new IV isn’t compatible with Heparin/Milrinone and the IV versions of the diuretics (kind of a blessing in some way, since it pushes him moving to more oral meds versus IV).
He’ll have another echo cardiogram on Thursday and then they'll decide whether or not to start weaning him from the Milrinone based on that. That process alone takes about 2 weeks.
Laura says: Today was the first day since Friday before last that the day felt somewhat familiar in terms of Shimmy and I having regular rhythms. He clearly wants to be at the boob for more than just nourishment and I am more than happy to have some soothing techniques back. Throughout though, Jaime has been the master rocker/napper and that’s been so great. I felt for the first time today that we’re back in some way to our regular times together. Simon spent several moments standing (with assistance) in my lap just looking out and enjoying the business of the ICU. He laughed, he smiled, we read a book. He got fussy when he was hungry. He fought going down for a nap…all familiar activities.
His heart rate and respirations have been a little elevated since he got off the oxygen but still within the normal range and when they shoot up because he’s upset, once he’s calm again they go back down. Not as much as we’d like but they do. Jaime and I can't help but feel worried about the #'s and hopefully tomorrow we'll hear that it's nothing to worry about or that it's something and here's what they're doing about it.
All the nurses and doctors keep telling us that it’s a good thing that he’s so vocal and fussy and letting us know he’s so over this. It’s the babies that just lie there and whimper that they really worry about. That is definitely NOT our little Shimmy. It’s sad to see all the leftover tape remnants but not as sad as when he had lines coming out of every limb and neck. Still fucking crazy that he has a line in his one of his scalp veins that threads down to his heart. Again…what?!!!
Slow and steady wins the race. Slow and steady. He’s more Yurtle the Turtle in his recovery now than the jackrabbit he seemed to be embodying during and just after his birth (First there was the five minute labor and delivery and then there were those feet of his).
Jaime heads back to work tomorrow and it feels a lot like when she went back after the first seven weeks with Simon. It was a hard adjustment for every one and we just have to be very care-full with how we handle this transition. Time together is so important. Any one wanting to visit the hospital between the hours of 8 and 2 is most welcome. Shimmy was awake and alert for most of the day so that Alli in the early afternoon and Anna in the early evening were both greeted with smiles. So dreamy.
Tomorrow is yet another day.
Amazing gratitude to all.