Weight on the board is 2510. Loss of 1 gram. Still 5lb 8.5oz though! Impressive! That is 4 lb more than when you were born!

25% oxygen.  Nurse today is unfortunately one we’ve never had.

We’ve regressed back to CPAP of 7…. We see it was an eventful night. At least 6 deep events and several others. 2 more deep events for this nurse prior to CPAP change. Only 1 since…. We also see most of the blankets covering the tubing is gone. Ok. What we worked so hard on yesterday for day and beginning of night shift is gone. When did that happen? Prior to the events?

Yesterday during all of his events it was not once mentioned going back to cpap of 7. No one thought it was a pressure issue. So now that we had a night of a nurse and a respiratory therapist both that have not had him, a day nurse who has never had him, and a doctor that has never had him,  the extra pressure is the solution? I ask if they at least got an xray to see if he has derecruited.

Turns out they did get one. Nurse just says he has chronic lungs but did not look at prior ones to see if there was any change…. Well we already knew he had chronic lungs that’s why we are still in this situation.

I tell her that pressure is not his issue, especially if we are not seeing derecruitment.

I feel like if they decide more pressure is the answer and he continues having issues because it’s not caused by lack of pressure we will just continue walking backwards because of incorrect treatment of an issue.

I tell the nurse yesterday we fought with his rainout issues and finally seemed to overcome it until around shift change last night.  I already see more moisture in his mask and tubing. I’m angry.

I express my concerns to the nurse and potentially sound abrasive. After I make sure she knows I’m not mad at her just upset because I think it’s the wrong treatment. I know everyone is on the same team trying to search for answers and help him with any ideas they have.

The temperature on the humidifier is lower than it ever was yesterday when we had our good setup for wrapped tubing.

Yesterday we had less than a .5 degree total fluctuation from 1100 to 1900.

Right now it is a whole 2.4 degrees cooler. That itself is almost 5 times a larger fluctuation.

Big event prior to 1100 cares. A respiratory therapist who is one of his favorites arrives. Puts him on neopuff for a break. The respiratory therapist supports his head and upper back and lifts him into more of a reclined sitting position. RT seems to like it, it is different, he has wide eyes and looks around. After a bit laid back down. The respiratory therapist elevates the head of his bed slightly more than normal. If reflux is causing his events this can potentially help.  Everyone has been brainstorming on how to help.

Cares. 37.1 temp. Just pee.

During cares I discuss with the respiratory therapist the issue of rainout.  What we did yesterday that seemed to help.  He likes the ideas and helps me make it happen again.  He says if only we had some sort of cover to put over the tubing rather than blankets and tape.

I laugh and tell him I have ordered one and just waiting for it to get delivered.  I am not sure the hospital will appreciate it but I wanted to try anyways.

Anything is worth a try at this point. I don’t really care what the normal is.  I value everyone’s experience and expertise but obviously what is happening is not the norm. It might not affect other babies like it affects little RT.

RT decides he wants to sit up again.  He lifts his head and back off the bed and does a sit up.  Big wide eyes,  swaddled arms! What the heck! RT is doing almost a complete sit up just looking around! We are all in shock.  You shouldn’t be doing that yet RT! Mom catches his head and helps support him up to look around then they lower him back down.

That was impressive!

Yep he really is strong.

We have created a little fort for him with blankets.

By the end of cares the condensation has visibly improved,  his mask is almost completely dry.

We ask if he had seen the x-ray from this morning,  he had not. He opens it up.  To me it looks like if anything there is some improvement!

Lunch. Back to NICU. No events since 1100 cares… so rainout is decreased by the blankets, or elevating the head of his bed is helping with reflux. Or both.  Maybe it’s multiple causes.

1400 cares. 36.9. Diaper change. As I’m undoing the diaper he poops. I close it quickly,  before any manages to get out.  I give him a bit to finish,  then change his diaper, he of course decides the fresh one is the better one to pee in.

3 diaper change.

The nurse thinks we since he has been good since 1100 it will be ok  Skin to skin time transfer is smooth.

It looks like condensation is increased.

He doesn’t want to settle down. 15 minutes into skin to skin he has a large desat event.  I can’t see the monitors or see how low he goes.  Neopuffed on me, I give him stim.

He comes back up. After his food finally finishes he seems satisfied and stops looking for food, he finally relaxes. A few minutes later he starts coughing, 6 hard coughs in a row.

Another large event, she Neopuffs I stim, he starts breathing again.

I ask if she thinks it’s a good time to put him back now.  She agrees.

Back into his crib he goes.

Well we got a short snuggle.  Too bad it had bad events.

The first event on me, the low was 28 spo2. That’s not good.  2nd one 64 spo2.

Stressful, maybe I should have just said no to skin time again today.

Oh well, he was happy and had fun even though we are stressed.

Back in his crib he is weaned to 21% oxygen.  Lowest from all day.  Why after his events does he seem to require less oxygen? Adrenaline maybe?

The sun is shining outside briefly, he is stable for now. We go on a walk and get a coffee and some fresh air.

Go back to NICU, one more event while we were gone.

Hang out,  chat with nurse.  She thinks it’s potentially reflux.

I tell her I don’t really think the higher pressure is helping at all,  but who knows maybe we would be having more events on lower pressure, but I doubt it.

A few more events.

Dinner then back up.

By shift change, 21 events today.  None between 1100 and 1400, if only we could take a picture of what’s going on and keep it that way.

At what point do you try something new. We seem to be getting condensation worse today than yesterday pretty much ever since I tried skin to skin…. so it’s it just not working or did water just build up and finally work its way out towards RT’s nose. Or is it not rainout that is causing the issues.

21% for close to an hour today too so confusing.

Nurse tonight is thankfully a primary! respiratory therapist is one of his favorites too.

Before the day nurse leaves for the night she says she agrees she does not think he would have done any worse on a CPAP of 6. Wishes him the best, is happy he has a nurse tonight that is familiar with him. Hopes he has a better one!

We ask about last nights red blood cell count,  she says it was 31.6, a bit lower than last week’s number. She will ask the Dr. about epo tonight. (link to epo will have more than you ever wanted to know)

Essentially when a adult or full term baby has low red blood cells the blood does not carry oxygen as well and become hypoxic (Lower spo2). The kidney senses the hypoxia and releases or creates more erythropoietin (epo) which is the driving force telling the marrow the production of red blood cells is needed.
If you continue doing red blood cell transfusions to bump up the hematocrit count the body has no reason to produce epo to ramp up its own production of red blood cells.  So there is a balancing act…  as with all medical things. Don’t want to give a transfusion too early,  but if he needs it he needs it.

2000 cares, temp, diaper, binky time. Mom shows the respiratory therapist how well RT can suck on the binky and just blow by support, no extra pressure. He high sats at 100 for a few minutes before he needs some pressure again.

New OG tube again because he yanked it out.

Mom and I hang out, Dr. does night rounds. Nurse says it will be a long one can he come back after rather than make the other babies wait.

She has some potential ideas to try out.

I’m glad our primaries are good at advocating for him when we are not around!

Our primaries agree with the way we advocate for him too so I’m glad we are all on the same page.

Time to do some laundry and then try and get some rest.

Today was your first real sit up! Your core is outstanding! You can still high sat on 21% even though you have deep events. Once we get this whole big events thing figured out… we will be much less stressed!

And we will be able to hold you more.

Sleep tight little one.

Love,

Pops