I hate rollercoasters

They say life is a rollercoaster in the NICU...we just experienced a day of highs on Saturday, and now Sunday things are sliding down fast.  Today your bpm settings went back up to 30.  That was disheartening enough because that is the one main thing that can get you off the vent, but THEN the NNP came in to talk about your lung x-ray.  It is not good.  You have something called PIE (pulmonary interstitial emphysema)  Just the word emphysema makes me cringe.  Your x-ray showed that your air sacs in your lungs are overinflated.  If they become too inflated they could burst which would put free air outside your lungs and possibly cause your lung to collapse.  To correct that you'd need a chest tube, or other invasive procedures to try to let the air escape. 

 

The whole problem is the vent.  You've been on it too long and the vent just pushes air into the lungs and doesn't "exhale."  The NNP said this occurs in children who are much much younger than you and she isn't sure why or how you developed it now.  Since there were no signs of PIE on Friday's x-ray she doesn't think it has to do with your PDA ligation.  They've tried to lower your pressures on the vent to help the air sacs, but that means your oxygen levels are lower and CO2 levels are higher which isn't healthy.  They will keep monitoring you via x-ray and we will keep praying.  Really the only way to heal is to get off the vent and allow time to heal before it gets much worse. 

A recent journal article I read about PIE stated:

" Intensive respiratory management is required to reduce mortality and morbidity in these patients"

"Pulmonary interstitial emphysema can predispose an infant to other air leaks. In a study by Greenough et al, 31 of 41 infants with pulmonary interstitial emphysema developed pneumothorax (lung collapsing), compared with 41 of 169 infants without pulmonary interstitial emphysema.^[15] In addition, 21 of 41 babies with pulmonary interstitial emphysema developed intraventricular hemorrhage (IVH),(brain bleed) "

 

You can see why Mommy's heart is hurting for you yet again.  I'm tired of bad news.  Why can't you have a break?!  You're an outlier here in being so old and developing PIE.  Maybe you will be an outlier in healing too.
 

Uncle Jacob came to visit you today
Look who's playing peek-a-boo under his legs.

Good news is you are big enough to try to regulate your own temperature.  So they changed the settings on your isolette and you can wear clothing and get wrapped in a blanket now!  That was exciting to hear, but a lot harder for Mommy and the nurses during care times. 

Look Mom I'm a big boy, I'm all dressed!

Hi everyone!

My dry weight is 1600g now about 3.5# and I am 13in

Now that you're learning to regulate your temp
we can hold you bundled up too!

I loved staring at your cute face.  You had a lot of sneezes
peaceful faces, and sleepy fake smiles.

Holding you 2 hrs was the highlight of this disheartening day.

Sleepy smiles!  Maybe you're dreaming about tackling
your brothers someday.

Looking around the room from a new angle!

Peaceful sleepy time.

After this sweet, peaceful picture there was an AWFUL transition incident.  For every transition in and out of the isolette we have to pop you off the vent and adjust the tubing around the IV pole.  Mommy is pretty good at transitions now and we had Chris our favorite nurse so putting you back in bed should not be a problem.  But when the assisting nurse popped you off the vent a piece fell off.  She went to put the vent back together and she couldn't.  The piece that popped off was a MAJORLY important piece that connects your breathing tube to the vent.  We couldn't find it!  There was no extra piece on hand, there was no way to put the vent back on, there was no way to attach the bag and manually give you breaths.  It was scary.  Your sats and heartrate dropped.  Alarms and PA announcements saying "Room 29, room 29" were going off; it truly was an emergency.  I frantically flipped on all the light switches and scoured the floor for this small clear piece of tubing.  After what felt like an lifetime the piece was found in your bed and they hooked it back on and worked on getting your vitals back up.  It was scary; my mind raced to awful thoughts.  The nurses said they have NEVER seen that happen before.  Again, you like to be the outlier and Mommy is getting a little tired of this title you've created for yourself.