I think it is worth recognizing and being truly grateful and relieved that she is off ECMO. Each day is amazing, and today is day 4.
Although there are no more 'rounds' to attend in the a.m., Justin and I still make a routine of going in the morning with the two other little kids to see Noa and get an update. I learned today that they have a time schedule of care for Noa. They try to only fuss with her (change tubes, suction stuff, change diaper, etc) every 4 hours. And its at that time that they invite us to touch, talk or stimulate her. Otherwise, they prefer we're 'hands-off' and let her rest/heal. (This isn't really in effect for them until she settles out...with all the medical intervention she's needed lately...but we want to cooperate in any way we can).
Today Noa's gases weren't that great. They were higher than they like to see, so we have been praying for improved lung/heart function. I did learn later that one reason for her fluctuation in gas #'s today was her body adjusting to the removal of some meds. That information was helpful. Noa is very swollen (puffy) because she's been getting behind in fluid removal from not being on dialysis for those couple of days, and part of it is being on a medication that keeps her paralyzed (the movement helps her body get rid of fluid). They have waited to remove any extra fluid with the dialysis machine for now...but tomorrow they will turn down her paralytic and start to take a little more fluid off.
Today she was removed off of another medication that helps the blood move around her body (sorta 'opens up' the vessels leaving her heart), that way her heart doesn't have to work as hard to circulate that blood. But, she did well without the med...hurray! Another positive, is that her VDR (that fancy respirator) is set at room air settings (20% oxygen)- which is also very good. It might go up and down at different times depending on how she's doing, but being able to be at room air is good.
One of the events today that could've been a 'bump' (and a surgical procedure that needed our consent...ugh, I dread that), was a new IV line they placed in the front part of her hip that gives access to an artery (a femoral line). They are wanting to remove her umbilical lines soon to avoid infection and need a new line to draw blood from as well as give meds to. It doesn't look very comfortable, but the procedure went well (and they found the artery, regardless of her puffiness which was a possible issue).
Finally, my day ended with an evening visit to Noa, and a little peace with some issues that have been so emotionally unsettling for me. We have been feeling pretty helpless in this process of Noa's treatment...but especially lately. Since our transition to going off ECMO, a different floor (NICU), different care, and the nurses adjustment to new a new patient (and Noa's adjustment to them!), we've been trying figure out 'where we go from here'. Maybe I feel better (or more in control) with more information and a map of where we've been, where we are, and where we're going. We know we want to move towards surgery and for Noa to heal, but I realized it would be helpful to have some tangible markers, even if they change, that clearly show us what we're moving towards and what we're hoping for Noa. I think that would help us to feel like part of the team and feel like we can cheer her on and better share information.
Anyways, I was able to articulate that better today and put my feelings into words to a couple of the lovely nurses that were serving Noa. They listened (through my tears at times) and both felt that it was a reasonable desire. And to my relief, one of the nurses (the charge nurse for the evening- the same nurse that gave Noa a 'spa day' last week) has encouraged me that she will communicate our need and try to get something in place for us that would help in that way. Whew!
So...other than that, just moving into the weekend and...JUSTIN'S BIRTHDAY!!!!! Happy birthday to the love of my life and the most beautiful and kind man (husband and dadoo) I know. Hopefully we'll be able to have a date this next week sometime.
Thank you again for praying. Let us know if you ever have any questions! And we will put more photos on soon....i know they're fun.