waiting for echo

So, they measured him today and he grew in length and head circumference. His length grew 2.1 centimeters, which was great. They want one centimeter of growth per week. His head grew so well again that he is on "catch up" growth and they are happy about it.

He had his echo cardiogram this morning and we are waiting to see if his right venticular hypertrophy has changed.

Mark Mendelow took us on a tour of Children's hospital and it was an amazing facility. 

Joy

new plan?

After a long meeting this afternoon/evening, we heard a lot of things and I'm still trying to digest them all. But, here were some of the facts:

-Jules now has severe BPD or chronic lung disease.

-If his heart enlargment is worse on the next echo cardiogram, he doesn't show good growth, he needs more oxygen support, or some "constellation," of these together happen -- they might do a trial of CPAP again.

-He will need to spend time at Children's hospital of Seattle in order to go home.

-UW NICU isn't sure when the exact right time to get him to children's hospital is, but they would prefer for him to be more stable, which for them would mean not retaining fluid and going on lasix for a couple weeks or so? 

-They want him to have surgery to get a g tube for feeding. But, he needs to be more stable to do so and only Children's hospital does that procedure.

-The longest time he could spend in the hospital could be another six months (until June). And for sure, he will be there another two months. 

- There is some complexity around his age (almost 41 weeks) and where that means he will go at children's... PICU, vs. NICU, vs. Pediatric floor. Most likely peds floor.

-Winter at Children's hospital is crowded and he might be more exposed to infection with RSV and Flu season.

- Right now, his growth is good. both in length and head growth. his head growth even did some catch up growth possibly. Everyone is pleased with is current growth, but length growth is the most important marker for him and his progress with his lungs.

-Maneesh, the attending noticed that Jules is not too interested in a pacifier and we need to be on the lookout for oral aversions and feeding issues coming down the road.

Okay, I will write more later when I process more. A HUGE thank you to Mark for coming and supporting us at the meeting and for taking notes and asking questions. 

Joy

2478 grams

He gained sixty something grams today, probably water weight. Sigh.

Jules Weighs 2411 Grams

Five pounds and four ounces.

Stuck

Jules isn't getting better. The UW doctors don't have any new ideas. They told us in rounds they are worried about him --  he is now one of the sicker kids on the unit with chronic lung disease. They don't understand why he did well after birth, but then got worse. We can't leave him the way he is because it is dangerous for his heart. But, they don't have anything left to try to help him. The pulmonologist from Children's didn't have any ideas today either. So, we (scott and I, the UW staff, and the Children's hospital pulmonologist) are having a family care conference on Monday afternoon to try and come up with a plan for Jules. Scott and I are feeling pretty sad and discouraged tonight.

Slideback

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