Earlier wake up this morning to have breakfast with grandma. I show her some of the pictures and video I have taken.

After breakfast we check grandma out of the hotel and put her luggage in our room,  then up to the NICU.

One of RT’s primary nurses is on today.

Weight is 2050 on the board,  still losing weight.  Getting rid of all that swelling he put on after eye surgery.

The nurse tells us he had a rough night,  starating at about 0500. They turned his CPAP pressure up to 9 now.

Currently on 38% oxygen.

Dr.  Comes by during morning rounds and talks to us briefly. I ask about getting an echo cardiogram because the last one was nearly a month ago and only shortly after surgery. I point out we haven’t had one here since before surgery and they can’t see the one that happened down at Tacoma General.

She agrees it would be a good idea.  Because of the higher pressure his heart now after surgery because the blood flowing out has a more restricted pathway.

She listens to my concerns and agrees that could be an issue.  It is validating to be listened to.

I go out and send grandma in for 1100 cares with mom.  Temp Diaper change, just pee.

Mom comes out to grab me The respiratory therapist is asking what we think about going backwards to niv nava. I explain my fear is that one of the issues we had was he would ride the vent on higher oxygen because he can. He would feel like he was over ventilated and breathe less,  the NIV NAVA would detect he wasn’t breathing and then say he was in back up and do all the breathing. If he is in backup everyone thinks he can’t do it or something is wrong with him.  But in reality he is just not doing it because he doesn’t have to.

He has peed in his diaper again so I change it again.  There is a sureprise poop. Fresh diaper he poops again,  I give him some time.  Nurse puts in his eye drops.  He poops again as she puts the drops in.
Good boy.
I wash up.

Then go out and get the supplies from the car to ship milk back with grandma. The milk donation process is taking longer than expected. Maybe by the time we fill our alloted space in the freezer next time.

Fill two small coolers with wheels.

We head inside NICU again Grandma gets to say her goodbyes. He is weaned to 26% oxygen!

I tell him I’ll see him later.

Grandma and I make our way out, load the car,  grab the luggage from the hotel and head to the airport.

We check her bag and the two coolers hopefully it makes it down safely.  It represents many many hours of work, interrupted sleep, late nights and early mornings, from one extremely dedicated loving mother.

I go to the CG base and try to log into my account that was supposed to be reactivated.  After 30 minutes on hold with tech support it turns out,  Reactivation takes only 4 hours not the 6-12 that I was told…  I also have to sign in before midnight the day it is reactivated.  Not within a two week period which is what I was originally told. Good to know! Now I can call early in the morning some time and then head in.

Back to NICU. Extremely busy in room 1. Multiple new admits. More High needs babys, it makes me sad.

RT is getting skin to skin time on mom.

But mid a desat event.  Spo2 down to 65…. .we get him back up. Scary to walk in on. I wonder if he has been doing worse.

Mom tells me he did fairly good while I was gone though and got down to 25% oxygen for a little!

He is on 65% after this last event.

He desats again and mom has to end skin to skin time early, they have to neopuff to get him back up. 100% oxygen.

Cares slightly early. Temp is 36.6, Just small pee. After cares down to 49%

Then slowly work on weaning him.

There seems to be a corelation between his coughs and his desats for sure.

We work up the courage to go have dinner.  Then back to the NICU.

A primary nurse is on tonight. Xray this morning showed derecruiting in his lungs.  It’s what I had guessed had caused the CPAP to go up to 9.

Cares start early because he had another event.

Grandma made it home with the coolers in one piece!

Well atleast that is good!

A respiraroty therapist that is in training is helping tonight, she is told that when he desats they bump him up. He desats to 84. She turns him up to 100. I ask if this will be the new norm.  I don’t want him turned up to 100% when he doesnt need it… it makes us worried about his eyes.

After most of the cares are done we swaddle him up and I get to hold him upright while standing so the nurse can change his bedding.

While I’m holding him.  The respiratory therapist that has had fast hands comes to help. She has airways been friendly and nice.  Asks how we are doing.  She does cpt on his back while I hold him,  he likes it today.

When I put him back in his cribette she puts him on the neopuff for his brake.  I feel like she moves closer to his speed today and is gentler with him! He actually likes the neopuff today with her!

I think she is getting RT’s need for slow and gentle! I’m grateful he did good today with her. Maybe I won’t need to have that talk with her?

Maybe she read the blog and I’m just really passive.

Who knows,  either way.  RT is happier which is the important thing, I’m sure everyone can agree!

After cares he is still on higher oxygen but slowly weaning down.

He gets some binky time and has his eyes open. Good boy.

Echo cardiogram scheduled for tomorrow.

Eye doctor will be back tomorrow 0800 for a thorough eye exam.

Possibly an xray tomorrow to see if the CPAP of 9 is helping his lungs recruitment.

We are grateful for slightly less brady events today than yesterday.

We say our goodnights.

It will be so amazing to someday be ablessed to sleep in the same house or take a nap in the same room as little RT and be able to do normal things parents do, hopefully without a constant fear of him having an event.

Having the fear that the diaper you change could be the last one

really changes your perspective, and makes every moment precious.