Days 14 & 15 - FINALLY
Yesterday morning, it started.
'Wow, he looks great!' 'He's really turned a corner!' 'What a difference!' 'He's really showing us he's ready!'[...]
Yesterday morning, it started.
'Wow, he looks great!' 'He's really turned a corner!' 'What a difference!' 'He's really showing us he's ready!'[...]
Redden had a fever through the night last night that caused me to go into a minor state of emergency. But by 9am this morning it had gone away and he was looking more like his normal self. The cultures haven't come back yet to determine if he has a virus but they have ruled out pneumonia and respiratory viruses, which is a big sigh of relief (this is their, and our, biggest concern currently).[...]
I sit in this PICU room, my new home. Stay here long enough and you'll watch everyone else leave except for you. Their babies all got better. And I am still here.[...]
We've heard it from everyone that visits with us in PICU.. 'Just remember, it's two steps forward and one step back!' All those steps make for some good days and bad days. Today was a particularly hard one for me. [...]
Yesterday and today were all sorts of amazing.
Yesterday, Redden had two good breathing tests, and the one this afternoon was even better! Instead of letting him do them on his own, I stood behind his little crib and cradled his tiny head in my hands, whispering and singing to him. And it worked like a charm. Even when he opened his eyes and watched me he didn't fight the tube or lose his oxygen. He needed me with him. This was proven when I wasn't awake for his night breathing test, and he didn't do very well. [...]
Early yesterday morning the Respiratory team tried to extubate Redden two more times, and he failed the breathing tests necessary to take him off the tube. It was devastating to wake up to that news (I had slept a full 5 hours that night... my longest night to date) I had hung so much hope on the idea that getting him off the ventilator would strengthen him to withstand his treatments better. And after meeting with his whole team of doctors this morning we came to the painful realization... [...]
Tonight Brian and I just sat, holding each other. Processing the hard moments that today brought... acknowledging that our arms were empty as our baby still sits on a ventilator in our room.[...]
Sometimes it's about the small victories. Tonight I'm celebrating that I got to kiss all over my baby and snuggle with him a little (in his PICU crib, but I'll take it!), and his alarms didn't go off! He was calm and relaxed, and when I moved away from his face, he even turned his head towards me to find me. It's not right that we are apart, and we both know it. I frequently have complained to friends about how 'I just want a break! These boys drive me crazy!' All I want right now is to be home with my family being driven absolutely crazy. It makes me sick to think of those moments and how perfect they actually were.[...]
This morning brought exciting news as we found out Red's MIBG scan got moved up a day, to tomorrow. This means he will hopefully be extubated tomorrow which means WE WILL GET TO HOLD HIM TOMORROW. After almost 48 hours of not holding him, this news has been thrilling to hear. Up until last night I couldn't even touch him or talk to him too much as he would get too excited and fight against his air tube. Hearing that I couldn't touch my baby broke me in a way I can't explain. [...]