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

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

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.