Posted 2015-02-01T19:59:00Z

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!'

And by the end of the day the hints turned into a statement... If he had a good night, then we would extubate in the morning. I tried to not let myself get too excited. Even if they did decide to extubate, then he still only had a 50% chance of not needing to go back on the vent. So I stood with him for hours last night singing to him and trying to keep him calm. Praying over and over and over again that the night would be a good night and that his lungs would be strong and the tumor would be small. Then I finally crawled into bed after midnight and tried to go to sleep.

At 4am I woke with a jolt knowing that it was a milestone... if he had done ok until 4am, then they would turn off his feeding tube. So I stumbled out of bed and asked the nurse for the 100th time... 'Is he doing ok? Would they still extubate? Are you sure he's doing ok?'

6am I opened my eyes and looked across the room at his crib and saw feeding tubes hooked up to him. I flew across the room saying loudly 'no no NOOOOOO!!!!!', only to get to them and realize it was just the poles of the bed.

Stay long enough in a hospital room and you will absolutely lose your mind.

After more fitful sleep I got up at 8am, verified the feeding tubes were still gone, and did my morning usual. Shower, put on a clean pair of pajamas, put on enough makeup that the doctors don't think that I AM IN FACT THE PATIENT. Brian met me with coffee and we waited for morning meeting to begin with our team.

And then we heard it.

'Today's the day! We're going to extubate!'

This is not the first time we've heard these words. But it's the first time that we made it all the way through the night and people were STILL saying those words. And the smiles were a mile wide on our face. Our ICU Doctor even said 'I'm team RED all the way!'

All day long we watched him meet each tiny milestone... Weaning off the ventilator, weaning off the meds, keeping all his numbers high, not biting the tube and going into DSAT. Honestly, I kept waiting for something to go wrong, and hoping and praying that it wouldn't. I really didn't know if my heart could take many more days where I almost got him back.

But I was reminded by a very wise and very dear friend today... 'Every second of Redden's story matters. Even the painful parts have a purpose.' And I kept reminding myself that this is his story, and his decision to tell us when he's ready. And I kept telling him 'Whenever you're ready Red. Mommy and Daddy are here, just tell us when you're ready.'

Finally everything was in place, he was alert but not livid, and the team arrived and said that he was ready. I was too chicken to watch so I hid in the hall in a spot where I could see Brian through the window but not Redden. They warned me that he would likely choke and gag and it could seem scary. And I watched and waited until Brian gave me the thumbs up and I could run back in and see him. And there he was, up in a RED chair (thank you hospital!), tube out, cannula in place. Alert and happy.

Oh my sweet baby... 13 days is way too long to go without holding you and seeing your sweet face.

And this is ALL I did the rest of the day. I held him, I rocked him, I let his Daddy hold him (briefly, sorry Brian!), and tried not to mourn how DIFFERENT 2 weeks made him seem. Bigger, stronger, less newborn. But still my baby.

Now I'm sitting in my usual corner, on my couch bed, and he's still in his usual crib. But that breathing tube is gone, and we're one step closer to 'normal life.' I fully anticipate that tonight is going to be a long and rough night (for me!). His feeding tube was turned off this morning at 4am and won't be resumed until tomorrow morning as they are worried about aspiration. So he might need to held, rocked, walked and loved on all night long.

NO PROBLEM.

A very very special thanks to my brother and husband for having enough clarity of mind to take pictures today. I will treasure these always.

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Days 14 & 15 - FINALLY

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