Happy Veterans day!

Enter NICU.

RTs due date was today. 11/11. Instead he decided he wanted to meet us early and came 7/21. If he had been more willing to stay inside a bit longer everything would have been different.

But the important thing is we are all still here.

RT is on 32% oxygen.

Morning rounds just happened no changes yet.

Primary nurse today!

She shows us the sign the primary nurse last night made for RT reaching 40 weeks corrected gestation.  Today is his due date. It’s adorable,  a photo of RT from day of life 3, and him posed almost the same last night. Excellent comparison photo!
She already played his high sat low sat game. Sometimes he will high sat then when n the nurse weans by one percent oxygen he desats.  Usually the desat happens because he wiggled or bared down.  Somehow both happen at the same time though.  This is why he is slightly higher on oxygen.

We catch the nurse up on what’s been going on.

She starts asking about the plan moving forward.

We just kind of laugh, explain there are so many different plans and ideas depending on the doctor that it honestly doesn’t matter. It depends on who we have what day. We have come to the decision that it doesn’t matter what path we take they will all work.  We just hope we confine going at the correct pace so that RT can grow heal and continue doing good. He is tough so whatever it is he will be ok.

She is amazed we came to this decision.

I tell her I was stressing too much about the idea of plans and that there were too many,  none are wrong,  just different paths to the same destination. It will take one week,  two weeks,  a month.  Each has its benefits, each has its risks. It doesn’t matter how we get there. Looking at it this way has made me much more happy,  I can laugh at how rediculous the plans are, when RT is the one leading the way. There will be some combination of what the Pulmonologist recommends and what the doctor on that day says.

We discuss when we potentially will move to the PICU, we express our concerns that we don’t want to move and be extubated at the same time, we either need to move and have some time then extubate, or extubate have some time then move. This way we have a base line if what is normal this extubation.

1100 cares. Just pee. We put him in a Seahawks jursey and do a Photo shoot. Yesterday our primary nurse gifted us a baby Seattle Seahawks jursey!  It is signed on the back by, Germain Ifedi, Michael Bennet, Christine Michael,  Warren moon! It made me cry a little.

RT looks adorable in it!

Swaddled.

Weaned to 28%.

Lunch.

Came back hung out.

Back when we were in room one there was a baby girl M that was delivered around the same weight RT was, her bed was next to RT’s. RT and M would make their alarms ding at eachother back and forth. It’s like they were talking.  I feel like there was a connection between them.

A few days after we moved into room 4 they got moved in here too. She is across the room from us but they still take turns making their alarms go off at eachother.

She has amazing parents, momys have had some good conversations about everything that has happened to them. They have been trying to have a baby for the last 7 years,  the first one baby boy Benjamin had his heart stop at 9 months gestation.

An angel baby is a baby someone has lost during a pregnancy or as an infant.  Savannah, was our angel baby, Benjamin is their first.

A rainbow baby is a baby born after a loss. It represents all of the loss but also the hope and love.

RT is our rainbow baby boy,  adorable girl M is theirs.

They have been touched by us and since they have a baby  girl they decided to give us a gift of some of their angel baby boys clothes,  after hanging onto them for 7 years. Made us quite emotional as one can imagine.

Primary nurse that gave jursey comes by.  We show her he is wearing it.

1400 cares.  Just pee.

Skin to skin. Goes good.

26%

When he gets wiggly he has a couple desats.

Pulmonologist stops by. Good talk about moving forwards, one more wean on PC over PEEP, then a few days and potentially try NAVA. The one where it reads the signal his diaphragm is receiving from his brain. He thinks we won’t move top PICU till after extubation.

Dr comes by. Essentially discuss the same thing. He thinks we will move before extubation, possibly as early as Monday.  Who knows though, that’s the whole things about plans.

1700 tone to put him back.

Cares.  Just pee.  Wean PC over peep from 14 to 12.

Occupational therapist comes by and helps him stretch. RT likes it.

Dinner.

Back to NICU,  shift change.

RT pooped a 44 gram diaper while we were gone.

Primary nurse tonight.

Cares. He is angry,  Then Bath time imediately calms down. He loves bath time.  He is on 27% all through bath time.  His spo2 sensor and heart Moniter are off of him for bath time as the usual.  Not concerned he looks happy all the way through the bath.

After bath time we put his spo2 sensor back on him,  high satting 100spo2! Good job buddy!

Swaddled.

Binky time. Happy clean boy!  Loves his pampering.

Tonight is this nurses last night here.  She is moving away. Sad face.

She will be missed.

Hopefully her move goes smoothly. We will keep in touch!
I guess if we are moving to PICU soon we wouldn’t see any of our primaries much. Maybe they will come visit.

RT is happy, some photos.

We love you buddy!