Tues Nov 13

We went to bed last night and woke up this morning knowing that the plan was to move Noa down 2 floors to the NICU sometime today. Not much gets down early due to the shift change from 7-8am and rounds around 9am, so we knew that it was the same routine this morning. Heidi went in to get the report during rounds while I hung out with Ruby and Emmaus in the lounge area. We've started utilizing the theatre on the 8th floor for added distraction. Movies start at 9:30 and play till 5pm. Today was Princess and the Frog. Heidi came up and we switched roles. In the room I talked to the dialysis Dr. first. Mainly about the transfer to the NICU and what it would look like for Noa. The dialysis machine seems to be as sensitive as Noa about being moved (they don't like it). They wanted to take her off the circuit, move her, and put her back on when she was down there. The Dr. said that she would most likely react to the change like she did last night (the Pulmonary hypertension crisis she had at 8pm). Turns out, she had 2  more episodes through the night. I can't imagine what she's going through on the inside... how it feels, what she thinks.... We're just trying to give you a piece of how we feel, and how we feel for her. I can tell you this, she's a lot stronger than me. All she knows is how to fight for her life. 

(Even right now as I'm sitting here at 10:45pm, she's having her OG (oral gastric) tube changed out because it's clotted. I'll remind you that it's the size of tube that adults use as well. She has pretty thick mucus coming from her stomach, it has some blood in it so it's thick and clots pretty easy. The nurses are joking about Noa not being able to go a shift without any drama.)

It was decided some time in the day that they didn't want to push her any more than necessary till she's stable enough to come off dialysis or the circuit needs to be changed (a day or two). The room is being kept much quieter and darker which is more like the NICU (why the picture is darker). She still has two nurses each shift. The nurses say that her blood gases look amazing. 

We're going to miss being in the PICU, the Dr's, being involved in the rounds each day.... It will be a new adventure for us in the NICU. We'll see a lot of familiar faces, it'll just be a new system. She almost always had a NICU nurse up in the PICU with her. 

We're praying for a day or two of rest and recovery for Noa (and no more crisis's). Also I think that Heidi and I just need a day or two without excitement to except that she's off support (except for respiratory), and although it a big step, it's not over.

The question we've been asking ourselves since she's been off ECMO is, "Is this the beginning of a long journey or the end of one?"

Thanks for listening,

Roses

Verse of the day/ Psalm 100:4-5 (Theme the last couple of days is "His unfailing love")