Holding Steady

Jules seemed in good shape today. he gained 46 grams and slept a lot. We changed a bunch of diapers and played him whale songs and rain sounds from his sleepy sheep. He loved it.

Joy

Good Steps

Julian had another good day.

This is what looks good:

- One of the lowest blood gas numbers (45) that he has ever had.

- The results of a chest x-ray on 12/28 may show an improvement.

- His echo remained unchanged, when they expected it to get worse.

- He did not take on any fluid weight.

- He was alert and calm with baby-like movements like chomping on his hands.

- Catch up head growth and along-the-curve length growth (Even if it is the 0%ile).

He slept on me for about five hours.

Happy New Year!

Joy

5 and 1/2 pounds!

Happy New Year!

Good day for Julian

Today was a god day for Jules. His echo showed the same heart enlargement as he had before, which is the best news we could have hoped for -- he didn't get worse. He grew in terms of length (but still in the 00.00 percentile) and in terms of head circumference (20th percentile!) and although he has had a crazy weight gain pattern, his lungs don't sound wet to the nurses, so maybe it isn't water weight this time. We are hoping he is doing healthy growing and especially starting to do catch up growth in length, which is what he really needs to do to get his lungs healthier. He was awake and alert and sucked on his pacifier for the physical therapist who felt reassured that he does not yet have an oral aversion. He charmed everyone in his swing and was pretty darn cute when we visited him this afternoon. Happy New Year! Joy

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.