Wake up early. Get ready for the day.

Eye appointment is at 0730.

0634 Phone rings. It’s the NICU, slightly scared but I’m guessing it’s likely just the nurse letting us know a change to the time for his eye appointment…. 

She says it’s not an emergency.  She just called to tell us that he is now in room 4. They had to move some babies to paint a small area in room one that was missed the first time. It is part of protocall to notify parents of a move.

She made the executive decision to wait till we were already up to call rather than scare us in our sleep so we appreciate that!

She says see you in a bit?  Yup we will be there in a little.

RT is a whopping 12 weeks old.

When we enter the NICU his room is to the right now.  Not the left. It is weird going to the new room.  He has a corner spot with more wall space and a window still. There is a new poster on the wall!  The nurse last night made a new 2 month poster for him!  The other one was almost done but dispersed somewhere before it got hung up.

It means a ton how much these nurses care and take the time to do something extra to personalize his space, celebrating and sharing his progress along the way! His posters are something we will cherish forever!

Weight on the board is 2290 down 10 grams.

28 percent this morning.

They start passdown. A nurse today that he had a long time ago only once.

His nurse from last night says he had a few brady desats over the night requiring stim and some events with shallow breathing or possibly apnea.

RT has another large brady desat event. He caughed about 45 second before it. He requires the neopuff to get back up.  The nurse adjusts his pressure on the neopuff. But it’s slightly too far away.  He comes up after some work.

Heart rate to 72, spo2 to 64.

We wonder what changed, more rainout at night again? Theofalin  level has not been checked in a few days. Is it really just what he does occasionally now? I hope not.

We do 0800 cares,  temp 36.8, just pee.  He stays on the mask,  don’t need to upset him by switching to prongs and then have an eye appointment.

We get him all calmed down then the eye doctor comes.

Mom doesn’t watch but stays to hear the results. It is hard to watch but a necessarily unpleasantry. The eye doctor asks if we have any questions, puts in his drops and begins the exam. RT gets angry with him but does ok.

It’s over fast. He says his eyes are actually looking pretty good!

His laser surgery has worked mostly.  His retinopathy of prematurity is stage 0! But the one spot in his right eye still has some plus disease, although it appears to be regressing! No injection into his eyeball needed for now!!

We will see him again on next Thursday to look again.

Well that is awesome news! A victory! For now atleast.

I give him a milk swab.  RT doesnt open his mouth or get excited about it.  He is angry about his eyes being held open.

He will not take bribes. RT your one straight shooter!

Weaned oxygen down to 25%.

I check to make sure all of his support is plugged into red outlets, meaning on generator backup. Most of them have battery’s too and can stay running with a loss of power for a bit.

I talk to the respiratory therapist about it.  He says they test the hospital generator once a week and ensure everything runs properly.

Good to know! I ask about the oxygen system for the hospital.  Sounds like it shouldent be an issue. Also they have extra oxygen tanks.

I mention earlier when RT had his event the neopuff was slightly too far to reach and adjust PEEP while doing pressure at the same time.  They immediately move it over!

We go and grab breakfast then back up.

1100 cares,  tamp,  medium poop this time!

Hang out he has a cough brady desat with some apnea.  Gets neopuffed to come back up.

It’s no easier to watch these events happen now.  But so far lately they are kind of short and he is able to be weaned after.  While not healthy for him,  not every event is a big setback like it used to be.

24% oxygen.

Weekly rounds, the wait before rounds is longer now that we are in room 4. Room one goes first. Our meeting, short but to the point. We ask about his Theofalin level.

The Dr. discusses the plan for weaning his CPAP going forward.  I mention I don’t think a lower CPAP will cause issues his leak out of his mouth and around his mask tend to have him on a CPAP pressure of 6 instead of 8 often, averaging 7.

Back to say hi to RT then off to a quick lunch. Wife and I share a celebratory 12 week slice of cake and a coffee.

Back up to NICU.

1400 cares. Temp is fine,  another poop! 2nd of the day!

Skin to skin with mom!

Goes well he settles quick. A couple times he pulls off his mask the feisty kid,  but mom or I am able to get it back on him quick before he desats too low.

1700. Time to put him back.  Cares.  Another poop! 3rd one of the day!

He does good with his cares! He enjoys binky time. He is becoming more aware of his contol of his hands,  his ability to hold his binky in his mouth,  or move it. He stil needs to work on it obviously but he manages to get his binky in his mouth by himself twice! The grin on my face.

He is amazing!

Dinner.  Back to NICU.

Same nurse as last night, one of his primaries.

RT behaved as we were gone!  No desats.  He got a bolus to his Theofalin because the level was slightly low the last time they checked several days ago.

2000 cares.  Temp is good, poop again!  4th today! Good boy!

Swap to nasal prongs. Pick him up rock him, binky time and patting he settles down after a bit.  Then one of the nasal prongs pops out of his nostrils. We have to disturb him again to get it back in.  He settles down quicker this time though.

23% oxygen!  Dr. comes by for nightly rounds.  Possibly down to a CPAP of 7 at some point tonight!

Hopefully he is in for a better night!

Hopefully the weather doesn’t get too crazy. Sounds like they have a good backup plan and system!

Love you smart kiddo!