Still no change

We spent lots more time in the NICU.

The pulmonologist came to see Jules again. No change in Jules. But maybe if the prednisone didn't help Jules get better, it might have stopped the downward trajectory he was on.

The pulmonologist isn't sure whether we should stay at UW or go to Children's Hospital.

He thinks we are looking at up to three more months in the hospital and then when we bring Jules home, bringing his oxygen machine with him for a year.

We got some cute pictures of Jules in the isolette with the top popped off of it before they stuck it back on again. We will post them tomorrow.

Joy

No change

There has been no change from the steroids so far.

They took the top off his isolette/incubator, but he lost 59 grams so they put the lid back on. They will try again in 48 hours to see if he can regulate his own temperature.

Pulmonologist is coming to see him Friday afternoon.

The stress and being in the NICU all the time are really wearing me down.

Joy

A day at the hospital

This morning we found out that Jules was doing  worse. His heart (right side) was enlarged from working too hard to push out all the extra fluid from his lungs. We were desperate to get the specialist from Children's hospital to take a look at him. We had been waiting two weeks and no specialist had been able to come to th UW NICU to see Julian.

Finally, this morning a pulmonologist was able to come. Scott and I rushed to the NICU to be there for the meeting (thanks to Mark Mendalow who was able to tell us the doc was on his way so that we could both be there in time and for calling to check and find out if/who/when someone was coming).

We were told that the only thing to try was an oral coarse of steroids. The doctor said he would not be surprised if they had no effect though. Julian's lungs are "stiff." 

We asked whether Jules should be moved to the NICU at childrens so that he could be followed closely by the pulmonologists there. They decided to see if the steroids work and then consider moving him to Childrens if they don't.

The specialist also told us that Jules time remaining in the hospital would be measured by months, not weeks.

Joy

a long two days

Starting this weekend, Joy and I have been advocating for Julian to be seen by a pediatric pulmonologist because his respiration rate has been high since birth (chronic tachypnea). We have been advocating for this because our team at UW Medical Center ran out of ideas and thought it made sense. Unfortunately the pediatric pulmonologist all work out of Seattle Children's Hospital, ironically just one mile down the road. Apparently it's notoriously difficult to get them to visit. After "advocating" (in this case think of that as "East Coast" advocating) with any one who would listen willingly or unwillingly and seeking and receiving help from our community we were able to get a pulmonologist to visit Julian, assess the situation, and ultimately prescribe oral steroids, which should hopefully help him.

Tachypnea is bad because

• Julian burns energy that would otherwise help him grow
• it's often a tip off that Julian's heart might be working too hard leading to the heart muscle growing in weird ways (aka right ventricle hypertrophy, RVH)
  
• Julian can't learn to swallow when breathing that fast. He's 38 weeks now so learning to swallow now is important because if we miss the window it may be hard for him to learn how and/or he may have various texture, taste peculiarities.

Julian is tachypnic because he chronic lung disease (CLD) of prematurity. His lungs are "stiff" from all of the mechanical assistance he has received coupled with his small (remember he's 0.2 percentile) lungs.

Also, note that children with CLD tend to stay in the hospital longer.

Retaining fluid

Jules gained a suspicious 70 grams yesterday, so they assumed he was retaining fluid in his lungs and that was causing him to struggle even more to breathe. So, another round of lasix began. The UW staff informed us they don't have any other tricks to help him and that they have to wait for a specialist to tell them what course to follow. 

Joy

Little update

His lung condition has gone from mild to "more than mild, but not extreme."

We are hoping to meet in person with a lung specialist next week to discuss using steroids -- prednisone.

Jules gaind 71 grams today, hopefully some of which is new lung tissue!

Joy

Julian's weight

He is 1710 grams today.

Joy

First Bath

There are two albums here to click through.

Album one has twenty pictures and album 2 has about 19 pictures of the bath. 

Album one has the pictures the nurses took of all of us together and album 2 are pictures I took. 

Jules gained 40 something grams today and is still struggling to breathe.

Joy

first bath

From Julian's First Bath Album 2

Album 1:


Album 2:

First Feeding

From Julian's First Feeding

Lot's of complexity today, but we did try the first feeding (even though he's breathing very fast). They put an nd-tube in. Basically a tube that by-passes his stomach into his duodenum at the top of the small intestine. Theory here is that he might be having "micro-aspiration" causing him to breath quickly. If that doesn't work after a few days we might be using some steroids. These have some possibly pretty serious side effects so we have to do the careful tradeoff of waiting longer and therefore little hope of real oral feeding) vs not waiting and the possible developmental side-effects of steroids. Lots of learning to do here.