Not sure what to say...

Connor was stable at 6 this morning when we went to visit. He was on blood pressure support, but otherwise the vent and chest tube seemed to be working and the nurse was upbeat and cautiously optimistic.

We went back to see him at 8. They have this thing called "touch times" where apparently you can actually clean him, change his diaper, touch him, kiss him, etc. As I mentioned before, he is very sick and any stimulation can make things much worse, so they limit these times. Right now they're tentatively set for 8, 12, 4.

However, we got back there and 5 nurses and the neo and NNP were at his bedside.

Apparently he had another potential complication of the ventilator, which is air leaking into the skin and other tissues where it is not supposed to be. He had air leaking into his mediastinum, or central chest area between the lungs, as well as into the neck.

So, to try to help this, they switched him to a high frequency ventilator. This is getting into territory I didn't see when I did NICU care in residency. My understanding is a high frequency ventilator is designed to give rapid, shallow breaths instead of the relatively longer, normal breaths in an attempt to decrease the pressure in the lungs in order to hopefully stop air leaking to places it is not supposed to be.

His IV lines are also failing, so they are putting in a central line, which is basically a permanent catheter that is threaded further into his larger veins.

They are also trying to reestablish the lines through where his umbilical cord was.

We left after 30 minutes with everyone still at the bedside, including the neo and NNP.

We just got word that now the right lung has collapsed again and they are now putting a chest tube into his right lung as well.

I think we're kind of numb now to complication after complication. Not sure what to say or think. Certainly we still have faith, and are and have been placing him in God's hands. We believe His will will be done. Again, so thankful for the countless prayers. I know God is hearing your prayers and comforting Connor in this time.

Heidi is currently sleeping, trying to get some rest, and they are putting more lines in Connor, which is the only reason I have time to type this...We slept about 3 hrs last night before she had to pump...then couldn't get back to sleep.

I'm doing the next paragraph a little more technically, so you may not want to read on if you're not in the medical field...I've tried to explain everything I'm about to mention below in layman's terms in this and prior posts above.

For the medical colleagues and friends reading this, it does look clinically that he has persistant primary hypertension of the newborn. He has developed what they are calling a mild right-to-left shunt based on the clinical picture, despite what the echo showed. He is currently on the high-frequency vent, last I checked fiO2 was 78%. PEEP was 5, I think down from 6. I forget what the top number is called but it was 12. Last ABG was 7.31. PCO2 was going up last 3 ABGs, although I think still under 50. Bicarb was increasing. Worst ABG I saw was 7.27 after transport last night. I think initial ABG was about 3.5 hrs after birth and was 7.34 or something. He's on D10 with amino acids, although I'm sure TPN is starting today or tomorrow. He's maintained weight, but my guess is just because of all the fluids. I can't remember if newborns 3rd space a lot. They do have him on 11 mics of dopamine which has been stable since he got to Plano. MAP around 45 last I saw. We didn't do this in the NICU that I know of, but his O2 sats pre-shunt are 93%, post were in the low 80s when we left. I may have that backwards. RR consistently 60s-80s. HR 130s. They have the nitric oxide machine at the bedside just in case...His ECHO showed mild TR, right vent pressures of I think 30 or 35. Normal vessels. At the time the PDA and PFO were left-to-right, although as I said clinically it appears there is some right-to-left shunting...

He now has bilateral chest tubes. They're working on reestablishing a UVC, which I was surprised they were try. He still has the umbilical art line. He has pneumomediastinum and now emphysematous changes seen into his neck. He's had a gazillion x-rays.

He had spontaneous rupture of membrane and no augmentation of labor. Clear fluids. Apgars 8/9. Good spontaneous cry (see screaming lungs video above). No complications we know of in utero. No genetic risk factors that we are aware of. No evidence of poly or oligohydramnios on the 2 most recent ultrasounds in the past couple of weeks which were done mostly for size/date discrepancy, although she was at -1 station at last cervical check so we think he had just dropped pretty far down pretty early.

I have full confidence in the NICU staff here. Dr. Santiago is taking care of him today, who is the medical director, I guess of the NICU. Dr. Reddy last night was fantastic as well. She sat down and talked to us and really gave us a full picture of what was going on.

To any residency faculty or colleagues...I am actually thankful for my NICU training. I'd be lost, I think, trying to help Heidi (although she gets a most of it on her own) and family understand just how sick our precious little boy is...although I do hate know just how bad things can get from here...it brings tears to my eyes just typing this, despite how matter-of-fact I sound...probably just me trying to maintain sanity...all we can do is wait and pray....