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Tough day for Jules.

His lungs sounded "Wet" to the nurses. He needed extra oxygen and he struggled, jerking his head as he gulped each breath. His breathing rate was higher again and his heart rate was up as well. He had a crazy weight gain and they deduced he was retaining fluid.

They gave him lasix again.
While I was there, he peed out a 1/4 pound diaper! 

Here's hoping he gets that fluid out and turns this around.

Otherwise, we are in a bad situation where they don't want to give him more steroids because of their dangers and correlation with brain issues, but it is not coincidence that only a few days off of the steroids and he has slid back to where he started = (

Joy

plateau & snow & chanukah

Some picture's from Gigi's party and snow and Julian and Chanukah...

We've had about a foot of snow. We still can make it back and forth to the hospital - barely. Most of the medical personnel have been sleeping there. The good news is that means there's lots of sledding going on.

We're now at the end of the prednisone trials and it's sort of a few steps forwards and a few step backwards. He's down on 1.0L/minute of oxygen @ about 50% O2. That gets us closer to what he could go home on - typicaly 0.5L/minute @ 100% O2. However, all the progress he made for pCO2 and NaHCO3 is basically gone. So essentially now we wait. He's still breathing too quickly to start feeding (don't want to risk pneumonia). And we just wait and wait and wait for that to fix itself.

5 Pounds!!!!!!!!!!!!!!!!!!

Jules is five pounds today! 

Our house has a foot of snow all around it and monday will be the fourth straight day of cancelled school. Grr.

We celebrated Chanukah with Jules during the three hours it did not snow this morning and got home just in time for 11 continuous hours of snow after that.

Irene, Tal, and Hannah came to celebrate the first night of Chanukah tonight.

Joy

top off back on regular flow & snow, 10 shabbat.

Shabbat Shalom

Seattle got more snow in the last two days than we have ever seen in our 5 years here. Real snow, 5" on real hills + scary, scary Seattle drivers. But I digress.

From Julian in week 9 and Gigi During the Snow

Julian's back in a "crib" (half an isolette). This means he's regulating his own body temperature. He's also back on "regular" flow (1.0 L/minute). This is all positive news. No change on respiration rate. A good day.

From Julian in week 9 and Gigi During the Snow

Flow

They are moving him from high flow to less flow and they seem to be in a hurry. It is frustrating because we worry they are changing too many things at once. 

He was on four liters at the beginning of this week, than 3, than 2.5, than 2, and now 1 liter. But his oxygen requirement has gone from 30 percent to 55!

Snowing

We are all snowed in, scott working from home and not sure we'll be able to drive to see Jules at the NICU today.

I just called for an update:

He is 2082 grams today! About 4 pounds 9 1/2 oz!

They are trying to see if he can get by on a lower flow of oxygen. He had been on 4 liters, was down to 2 liters today, and they will try 1 1/2 liters next if his blood gas is still okay, which they are checking at 1pm.

His isolette is down to 28 degrees in preparation for popping the top off of it again and seeing if he can regulate his own body temp.

His fast breathing has not improved yet.

Joy

steroids working modestly

Julian seems to have responded to the steroids modestly. So we're continuing to keep him on them at a reduced dosage. Specifically, his pCO2 was down to 43 from 54 or so. Also his bicarb (NaHCO3) is also down (I think they said in the 20s). What this means is that the pCO2 is probably "really" down because basically CO2 when dissolved is an acid. The body wants to keep its pH constant. So as a result it produces a base, NaHCO3, to keep the pH constant. The fact that the NaHCO3 went down indicates that the pCO2 has been down for a while -- long enough for the body to adjust to the new level.

He's still breathing quickly (tachypnea) and his heart rate has increased (tachycardia). The tachypnea we hope will resolve as his body figures out that it can "ventilate" (get rid of CO2) less with the help of steroids and as he develops healthy lung tissue that can get rid of the CO2. The tachycardia is relatively minor right now and not well understood.

We have decided to stay at UWMC (we were thinking of moving to Children's) as we're seeing progress and Julian is able to see the physicans he needs to see.

Gigi's 4th Birthday Party

Top Off and Then Back On

No Change yet again

= (

But, aunt merrie came to visit and Gigi helped Jules suck on his pacifier. I held him for several hours today and that was nice.

Scott is still trying to upload the  most recent pictures, but apparently he is out of online memory?

Tomorrow, is Gigi's 4th birthday party. She is pretty excited and I think will wake us up extra early in the morning. So, I'm off to rest.

Joy