RT is 20 weeks old today,  140 days old!

Happy birthday!

Arrive at Peds. Nurse we’ve had several times has a different role today but comes to check in on us anyway. Updates us on possible ENT appointment tomorrow.

Yesterday she was worried about us and the snow and continued to worry while at home last night. So she brought us scarves and gloves to use for the remainder of our stay. How nice!

Calm restful night but no poop even after the suppository. I think it must have fallen out.

Throughout the day nurses and doctors stop by updating us on the situation with the ENT (Ear,Nose, Throat) appointment.

I file down RT’S talons.

We do some stretches, then I hold RT on my chest laying on the ground.

Then bath time! RT enjoys his pampering. And OT (occupational therapist)came at the same time. Massages in the bathtub sure do help his stressed body. As long as the binky is in his mouth.

Pull him out dry him off, OT helps with more stretches.

Glad we got to give him a bath before surgery!

Nurse asks if we have seen the doll with the G tube.

No, but we have heard there is one.  It would be good to see.

Yup. Looks like the pictures,  it will be different,  I’m sure some people will get weirded out by it. Or say poor baby.

But really,  it should help keep him safe, growing big and healthy, it is what he needs for now. Hopefully whenever it is time we can remove it and it can close up.  Often it closes up on its own without surgery.

Surgeon comes by to introduce himself, talk about the surgeries, relatively low risk, high gain.

We ask some questions, after the surgeon leaves the nurse compliments us on our questions.

Kind of weird to think not all parents ask questions like we do, not the first time we have gotten a comment like that.

ENT comes by instead of tomorrow morning at 0730 he will examine RT now.  And once more before intubation.

He describes the main things he is looking for,  several unfortunate scenarios, like paralyzed vocal cord on one side from PDA ligation, damage from intubation, scarring etc.

Explains how to stretch it if it is too tight, incisions and a Ballon to stretch his throat…

I swaddle up RT tight so his hands won’t get free. Complimented on my swaddle abilitys.   I’ve gotten good ptactice its important to keep him from getting free sometimes, particularly during eye exams,  he could yank one of the specuulums holding his eyes open and tear his eyelids.

Exam is fairly short,  put a bore scope down his nose into his throat and down to look at his vocal cords, looking at everything on the way,

Slight scarring in his left nasal passage, probably from his feeding tube it sound like,  also some granular tissue. Down into his throat,  it’s a little raw, inflamed he says likely from when he was intubated,  can take a while to subside.

He says looks like his vocal cords are moving,  that’s a good thing! No paralysis.

Wants to take another look tomorrow before intubation for surgery get a better look with different equipment. Look beneath vocal chords for any problems.

Well good news so far!

I hold RT again.

Lots of holding and snuggles today! Put him back,  mom does a diaper change.

Hold again.

It’s stated snowing! Pretty out the windows.

Eventally put him back get him comfy.  Make sure he is asleep hang out them off to get some sleep before another big day tomorrow.

Surgery at 1300 tomorrow

I will try to update when we drop him off, and when we hear he is out of surgery. Surgeon, and ENT Dr. said we will maybe get some pictures!

Walk to hotel is pretty in the snow.

Might be the last snow I see for a long time, I hear Florida does not get much…