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.

3.5 pounds!

From Gigi and Julian on Day 50

Jules, not to be outdone by all of us tub-o-lards from Thanksgiving, packed it on yesterday for 47g., bringing him way over 3.5 lbs.

He continues to struggle with trying to breath less frequently, the current attempt at 4.0L high flow appeared to be working somewhat this AM, but I think we'll learn it hasn't made a difference, having seen him this PM.

Also, Gigi went to tea with Nana, Grandaddy and Joy:

From Gigi and Julian on Day 50

happy thanksgiving

From Julian's First Thanksgiving

- No I'm not trying to breast feed.

- Bad things in Mumbai today. Pray for those impacted (I guess we all are)

- He gained 43g. Let's hope that keeps up.

- X-ray of lungs not interesting, a little hazy.

- No info on neuro consult yet.

- Julian is back up to 150ml/kg - he's back to more fluid (and thus more calories)

- Joy made great turkey dinner.

- Whole family went to visit.

erev thanksgiving

From Julian on Days 46 and 47

From Julian on Days 46 and 47

- Going from 2.0L on high-flow to 3.0L on high flow. This should allow him to take fewer breaths. Right now his respiration rate ranges from 50 resp/m to 110 resp/m. High variance - we'd like to see it be around 60. Also his oxygen requirement is down to 33% with this new change.

- I held him for a good long while last night -- and fell asleep. Joy held him tonight.

- I advocated for a neuro consult for the brain stuff, if it's so rare perhaps having an expert take a look would make sense?

- X-ray coming tomorrow

- Weight gain is less than 20g/day for last 10 days. We'd like to see that go better. Too many changes today, so we wait.

- Are you annoyed with all the mismatched units? I am. Seriously can we stick to imperial or metric. Make up your mind people.

high flow working?

As you may recall from yesterday, Jules returned to "high-flow" because his pCO2 was 67. As of last night it was down to 57. Also, that 57 number was an "aterial blood gas", which means that it's more accurate. (So was it the measurement or the high flow?)

He gained 21g today and now weighs 3 1/3 lbs. About 4 times smaller than the smallest turkey any of you folks are cooking.

Back on high flow

Quick updates.

CO2 in blood high. So he's back on high flow. That's a regression and part of the broader respiratory mire we'll be in for the next while. They've also reduced his fluids by 10ml/kg to 140ml/kg. In theory less fluid will make less work for him to do, more time for his heart/lungs to get better.

Cranial Ultrasound showed that the ventricle assymetry is less and the one ventricle is still "dilated" but no more so than the before. So this seems ok.

I held him for a good 1.5 hours today. He fell asleep after I sang to him.

And what about the flat head (toaster head). Well..he likes sleeping on his side -- he has breathing issues when he sleeps on his back.

The Whole Family Together At Last

From The Whole Family Together At Last

Shabbat Shalom: Happy 6 week birthday and 3lbs!

Jules is 6 weeks old. The diuretics seem to be working, his oxygen requirement is down to 32% and he's has safely cleared the 3lb mark! Joy held him for a while today and he stayed very happy and oxygen saturated. This is a good end to a fairly stressful week that began with fluid retention.

I think the big picture now is that we're working on 2 things. Get him breathing on room air and more slowly and getting him to start feeding orally. The breathing thing is going to go on for at least a month. Basically all the oxygen pumped into his lungs over the last 40 days or so ends up damaging his lungs and creating scar tissue. Also he has started reataining fluids (in his lungs) this compounds the problem. This means he continues to need more oxygen. To address this - for real - he needs to grow and create new lung tissue. That takes time and diuretics.

He also needs to learn to feed orally. This means he has to coordinate the suck-swallow-breath mechanism. Typically this happens around 32weeks (he's 35 1/2 weeks now). But he's small and his lungs are small and he hasn't really shown an affinity to the pacifier. This is something to work on.

My dad's sister and her son are visiting. More fun for Gigi.

diuretics working?

He's on some new diuretics as of 1pm today. They are little less "harsh" as lasix. He seemed really great this evening. I held him for an hour and he cried like a baby...

Joy Posting

I visited Jules this morning. They found a large weight gain of fluid again and started him on two different diuretics to try and get the liquid out. He is on 38 percent oxygen right now and they are hoping that if these meds work, he will need less oxygen and the number will go down below 30. 

day 41

Unremarkable night.

begin groan...

• 3 nurses who have never taken care of Julian in the last 12 hours. 2 of whom are "per diem" (aka contractors). annoying.
• did not weigh him in the night. annoying.

more fluid retention?

I visited Julian last night and he slept peacefully. Over night he seemed to have gained 70g or so, about 3x the typical weight gain. Also his oxygen requirement was up to 40%. So, I guess he's retaining fluid again.

So...we wait to see if this resolves or, if it doesn't, we give more diuretics or do a chest film to see if the fluid is in his lungs.

On the positive side...he's teetering on 3lbs, depending on how much you believe the weight gain is "real."

no blast cells

quick update.

- no blast cells in subsquent blood draw, which means no further concern for leukemia etc. apparently, this is pretty normal to see these in "young" bone marrow.

breathing is hard

Lot's of visits to Jules today. In the morning for rounds for Scott, in the morning after rounds for Joy, after dinner for Scott. 

Here's what we learned...

respiration - The diuretic seems to have worked somewhat, in that his oxygen requirement is in the low to mid 30s. However, it's still not back under 30. There's lots of talk of "chronic lung disease." Essentially this is a given for most of these premature kids, especially low birth weight ones like Jules. It basically means that through mechanical ventilation his lungs have become damaged. In practice, it just means that he's basically following the normal course. So the next week looks like: see if diuretic worked. Wait till Wednesday. If after Wednesday his oxygen requirement and amount of breathing isn't less, probably give him "chronic" diuretics. 

new blast cell - well they found "1" of these in his blood work last night. they're usually indicative of leukemia. but they only found one, and leukemia is rare-to-non-existant in these types of kids. so probably a measurement error.

 

Setback Sunday

Let's hope his heart  and lungs are not seriously impacted by all this fluid.  We will be checking in and visiting a lot today and trying not to worry ourselves crazy.

retaining fluid

Gigi visited Jules today, but Jules had a tough day.

Jules gained 110g, his oxygen requirement is up to 45% and he continues to breathe quickly. He's probably (definitely) retaining fluid. They did a lung x-ray and it was "hazy" meaning there's fluid in the lungs. They'll be giving him a diuretic (make-you-pee-drug) called lasix. For the small-obsessed they'll be giving him 4 doses of 4mg lasix / kg of Julian.

They'll also being doing an echocardiogram to check out his heart. Fluid can be retained lots of places, and the heart does funny things when fluid is retained.

Since taking his lasix, he had big wet diapers and his oxygen requirement is down to 32%. Getting that fluid out of the lungs I guess did the trick.

Joy posting

Jules gained 23 grams today.

His oxygen requirement went as high as 45%.

When I held him tonight at the hospital, his oxygen was at 40%. 

A lot of people ask me what it is like to hold him. I LOVE holding him,

but it is a pretty difficult experience.

It is so hard to have a baby that you are only allowed to touch for an hour a day. When we do get to hold him, we have to be very careful with his wires and tubes and promise to sit still with him in a chair for an hour. We hold our breath and hope that he doesn't desat or have a brady and wince each time the machines start beeping, warning us he is getting stressed out or having a hard time breathing. Tonight, thank goodness he did well and his machines were quiet. I got to hold his hand and he snuggled into my skin. It was amazing.

Shabbat Shalom

35 days old today, his 6th Shabbat (Jewish Sabbath) and Julian weights 2lbs 12oz. My exit-o-meter™ says 1/16/2009. Julian's grandparents are here spending time with all of us (my parents).



Julian had his ROP (Retinopathy of Prematurity) test. He was basically guaranteed to be "Stage 1" -- which he was in Zone 2. And that's basically the best we could have hoped for. It generally resolves itself at that stage. Note that probably the most famous person impacted by ROP is Stevie Wonder.

Joy tells me that they really had mess with his eyeballs to get a good look and Jules held up well. No ABCs no increase in oxygen need. I guess he's getting tougher.

I held him today while wearing a mask since my throat is still tingly. He was displeased. After 10 minutes of repositioning we decided to put him back in his isolette.

Joy Post

I went to rounds this morning. They told me Jules was doing better, his oxygen requirement was on the way down from 40% yesterday to 30% today. His long term goals are to come back down to room air and lose the nasal prongs.

As far as eating goes, he gained 19 grams. Soon, they may change his feedings through his nose tube from continuous drip to eating every 2/3 hours to help teach him about hunger and get him ready for bottle feedings.

He snoozed a lot today and looked sweet and peaceful in his isolette. 

up 30g and nursing

Joy tried nursing Julian today for the first time. This is all part of teaching Julian to suck, swallow and breath. Apparently, like his sister, he has a "disorganized latch." In plain English that's "he moves his tongue around like a crazy person when he supposed to be drinking."

Julian gained about 50g over the last 2 days.
His oxygen requirement has steadily gone up, except for today. So we're not sure if that's ok. When I asked some of the medical staff they seemed somewhat unconcerned, but that if it continued to progress they'd do an x-ray.

Oh - he's the 0.3 percentile in weight. For you math haters, that means that, as compared to all babies his gestational age, he is lighter than 99.7% of them. If you took 1000 babies and lined them up from smallest to largest he would be 3rd in line. He has varied between 0.2 and 1 since birth. So I presume the estimates aren't that accurate on the 0-1 range.

ultrasound negative

He gained 41 g yesterday and the cranial ultrasound was mostly negative.

We got a beautiful quilt from the Finkelsteins. Thanks!

Upcoming stuff:

Respiration - Trending in the mid 30s now (percent oxygen). This is trending higher than last week. If this persists they'll do a lung x-ray. Current theory is that his lungs need to grow (now that we've eliminated the hematocrit issue)

Feeding - Doing well here on 27 cal/oz. Still staying on his growth contour -- 1st percentile or so. We'd like to see him jump up.

ROP - Opthamology exam in Friday. Answer will be on Friday one of : Stage-N where N goes from 1->4. 4 is worst and requires immediate attention. Or "too premature". The thinking is that we'll get a "too premature" for now. Stage 1 & 2 you do nothing. Stage 4 you go and laser the blood vessels and there is typically some loss of vision. We don't have additional risk factors here.

Brain - Still we have this assymetry but don't know what it means. Need to pressure the doctors more on this one.

My First Posting

No weight gain for Jules today. He has a cranial ultrasound scheduled for this afternoon to check for brain bleeds and a test for ROP later this week --  http://www.nei.nih.gov/health/rop/index.asp

Thank you to Thila for a delicious chicken dinner and matzah ball soup and to Bayla for amazing pumpkin challah!

Joy

2.5 lbs and learning to suck

From Julian on Day 30

He gained 41g today up to 2.5 lbs. Joy and I were feeling well enough to go visit him. Joy held him and fed him breast milk on her finger. This is part of how he'll learn to eat.

1 month old or negative 6 weeks 3 days

Yesterday Julian was one month old. He's up 25g over the last 2 days to 1092g. He was breathing very quickly for 5 hours this morning and so they're worried that he may be getting sick. Soon after they got worried they saw that he had pooped. So maybe he was working on that.

Julian is also negative six weeks adjusted today (non one says this). They use two ways of measuring age:

Gestational (or Adjusted) Age and Age.

Gestational Age is typically measured as a so-called "adjusted" age where life begins at 40weeks from the last menstrual period (LMP). AKA: When he probably would have been born. In the lingo, though no one ever says this while still in the hospital, Julian is negative 6 weeks, adjusted.

Age is measured just as you'd expect. And Friday was his fourth week. So he's 1 month old.

Adjusted age is important because it's typically how they pick the comparison point on what he can do (say bat a toy) vs what a non-preemie can do.

Joy and I are both sick so we couldn't visit Julian. Joy's friend Tiffany came to visit and said hello to Julian.

up 49g

- He's up 49g today to 1067g (2.4 lbs). Possible exit date, based on my silly calculation, is now 1/12/2008
- He's tolerating the mct which is giving him more calories per unit volume.
- He's on low-flow oxygen. Avid readers will recall it's been about a week and half since he regressed to high-flow. So this is exciting.
- Joy is sick and I might be getting sick. So Jules had no visitors today. :-(

down a little

Jules lost 11g today. So they decided to put beef up his food with additional calories. Basically the limit is 30 cal/oz. They're going to add some kind of fat called MCT to get him to the high 20s cal/oz (he's on 25 cal/oz now).

Joy's sick so she can't visit. I held him today. The linear regression says exit date is 1/17 today.

1kg & jules4obama

Weight up over 1kg - 1029g. No change on anything else - well besides the first African American president! Julian's oxygen requirement seems slightly up to around 30%.

I've been dorking out lately looking at the last N days of his growth to predict when he'll cross the 4.5 lb or 5 lb mark. So, if I do something simple where I use a linear regression and look at the last 10 days- N=10 (and everything else is ok with him) he crosses the 4.5lb mark around January 15th.

keep on, keeping on

Up a bunch of weight to 991g. Hematocrit up to 31 (from 26). This means the Iron and EPO are working.



There are some concerns that his current growth may not be allowing him to catch up to non-growth restricted preemies. An abdominal CAT scan on the horizon to check things out. Actually what they said was they might put him on "MCT", a caloric booster. Likely, they'll increase the caloric density of his food.

Head Ultrasound and ROP (preemies sometimes have retinal detachment issues) tests coming up in the next 7 days.

a lot of the same

From Julian on Day 23

This weekend Jules grew about 1 oz - 30g. He was up 36g and then down some on Sunday. From a breathing perspective he's the same, requiring between 23-28% oxygen on his high flow oxygen.

I got to hold him for a good long while.

We've been blessed with many visitors and folks helping. Just this past week my sister and fiance, my brother-in-law and my Mom came to visit and help. Thanks!

Many folks have asked me personally - "how's joy?" Joy is about half way through the expected 6 week recovery from her ($31K) hospital stay and c-section. We're living back upstairs - our house has a lot of stairs. And she's threatening to start driving again this week.

Halloween Day

I had a great visit with Julian after Shabbat dinner tonight. I flipped him over, changed his diaper and took his temperature. He was wide awake the whole time and seemed ok with all this fussing over him.

Joy didn't visit today, she has some cold symptoms.

All the while, Gigi recovered from herillness quickly. The incentives were just too high: dress up like a ballerina princess, get candy, and go to a party.

4th Shabbat & Happy Halloween

Julian extended his unremarkable, mildly positive run to 3 days. He grew 15g and is still on high-flow, requiring just a bit more than room air concentration of oxygen. No interesting events. All good news.

I didn't visit him yesterday since I was feeling little unwell. Joy and Joy's brother who arrived at noon checked on him in the afternoon. My mom left yesterday.

Gigi, not one to stay out of the action, decided to wake us up at 1am with her barking seal noises, struggling to breathe. How did we avoid croup until now? We were about 3 minutes from visiting our favorite home-away-from-home, the hospital, but she settled down after an hour of steaming her and sitting outside discussing the falling leaves. After she settled down we move her mattress into our room. Apparently, this meant sleepover party for Gigi at 2:30am.

day 19 & 20: 2 lbs!

Perhaps, as a sign of stability, we can combined 2 days into 1.

On Wednesday very little happened. He slept, he required about 21-25% oxygen on high flow nasal prongs. He's eating fine. Apparently he had a poop blowout. I'm guessing that was like 5ml for him :-).

His food requirement went up to 5.6 ml/h in accordance with his weigh. The formula is 150ml/kg/day. Technically this may be his "fluids" maximum into which they want to make sure there's sufficient caloric density. To calculate his hourly amount of fluid you take 150ml/kg/day * 892g * 1kg / 1000g * 1day / 24hr = ~5.6ml/h. But I digress, since I don't understand this.

By Thursday morning, he gained enough weight to cross the "magic" 2lb mark - you know 908g.

We held off on holding him yesterday as moving him a bunch seems to piss him off right now. We'll wait for him to get bigger, have bigger lungs, etc.

day 18: holding is poison?

Morning

Weight slightly up. Growing ok, but not as much as folks would like (100g over last week). So they'll be increasing the caloric density of his food - up from 23 cal/oz to 25 cal/oz. So basically we go from a 2:1 ratio of breast milk:formula to 1:1.



Oxygen requirement still hovering around 30%.

Evening

The evening was a little bit more exciting. We arrived around 8pm and I asked to hold him. They pulled Julian out and put him on my chest. He started de-saturating and went down to near 50%. Typically they'll expect some amount of movement to cause him to get a little funky. After about 3-4 minutes we decided to put him back in the isolet. 

His stats still didn't come back. They punched up the oxygen to 50, then 60 then 70 then 80%. Still no response. Eventually he settled down. They called over the doctor and respiratory therapist. They decided to get an x-ray, blood gas and check his hematocrit level. And the respiratory therapist dude fiddled with the oxygen supply. After he left and Julian was settled, I noticed the oxygen tube wasn't plugged into the source after all the fiddling. Oy! The x-ray showed nothing. Which by the way, runs Windows XP. Blood gas was normal (not acidotic, normal CO2). Hematocrit eventually came back as 26, down from 27. They decided to put him back on high-flow nasal plugs. 

Well that was a fun 2 1/2 hours.

day 17

Julian had a mixed day. He gained some weight, but is struggling a bit with low hematocrit levels. This is not uncommon for these little kids. They are born with a relatively low ability to produce red blood cells (oxygen carrying) and don't have a lot of them. In the womb they don't need them; Mom oxygenates their blood. But for premature babies they start growing quickly and need more red blood cells faster than they can make it. Julian's oxygen requirements are up to 27-30% right now. They'd prefer for them to learn to make their own instead of giving them a transfusion. So, we wait the 1 or 2 weeks for the Iron + EPO to work that they gave him this morning.



When we visited him today Joy held him. It was nice, but his blood didn't stay saturated (with oxygen) very well and when he went back into the isolet he struggled a bit to stabilize. Nothing any parent wants to watch. It was something like: look at Jules work hard to breath, look at the saturation number of the screen above, repeat for 5 minutes.

We did learn that we'll be able to bathe him in the next week or so.

Day 16

Overnight they checked his blood and learned that his hematocrit levels are low. Also he's up on his oxygen to 25% (from room air which is 21% oxygen). So they want to give him EPO (like certain disgraced athletes) and Iron. That happens on "Mondays, Wendesdays and Fridays", so they'll start that tomorrow. If he starts "presenting clinically" (aka something bad happens that they can observe) with further stress there's a slight possibility of giving him a blood transfusion.

Some setbacks?

Looks like Day 15 could be our first setback day in a while. He may have some kind of infection. They're monitoring him very closely.

Jules seemed to be struggling breathing today and had some "desaturations", seemingly he forgot to breathe which isn't uncommon. The are so-called ABCs (apnea of radycardia) that occurred in a cluster around 2pm and then a few small ones throughout the night. He's back on nasal plugs with some oxygen. That could be the infection.

The food side is looking positive, he's up to 5.2 ml/h which is full feeds for his weight which is up to 845g.

Also, I couldn't visit him yesterday or today because I'm not feeling well. Can't risk the infection. However, my sister is here. She and Joy visited Jules today and noticed that he seemed a little worse for wear today.

Finally, the routine cranial ultrasound was negative; no brain bleeds in either one. That's good news. The ekg they sent off to Seattle Childrens yesterday came back as PACs to keep an eye on, but nothing to worry about.

Gigi's getting ready for Halloween. Joy's Mom and Gigi had mock Halloween a few days ago and Gigi and her friend went to the pumpkin patch.

2 weeks old!

Shabbat Shalom.

Size - 817g, +3g. You can see the chart at the top.

Food - Julian is up to 4 ml/h on feeds. They want to go to 4.5 ml/hr at about 9pm tonight. When they get to that, then they will discontinue the TPN (Yellow Liquid Nutrition) because continuing it would give him too many fluids. So then they get to pull the IV after a few days. He'll eventually get up to 4.9 ml/h for his current weight - aka full feeds, that's based on a certain number of calories/kg.

Breathing - He keeps trying to eat his nasal cannula, so they're reading that as ready to remove the tubes. Good news.

Other - Routine cranial ultrasound today. No news on the "early heart beats" from the cardiologist yet. Joy and I might be getting sick, which means no NICU visits. Let's hope not.

Next few days - He'll just be biggering and biggering. There will probably be some pull-back on the feeds, based on how much he digests. Basically they draw out of his tummy every few hours and see if there's less than 2 hours "worth" of food in him. For him, today, that's 4 ml * 2 = 8 ml.

Just a tube up my nose

Today's first picture is actually a video that let us get a good look at him with fewer tubes.

Jules just has a tube up his nose now that is blowing "room" air at a low rate. This is good news as it means he has very minimal respiratory assistance. 

He's up over 800 grams. So I think I see a trend up now over the last week or so.

He has developed some PVCs or PACs - aka early heartbeats. They did a "12 lead" ekg (more detailed measurements) and sent this to a Seattle Children's cardiologist. It's apparently relatively common and goes away. He's not showing any signs of heart issues. Supposedly it was hard to find space for all 12 leads.

Over the next few days we'll try to get him to "full feeds" for him that's 4.9ml/h. At full feeds he would hopefully grow 10-15g/day for a few weeks and then 20g/day on average until he weighs 2200g-2500g. Also, they'll soon take him off "TPN" (bag of yellow stuff) that they drip into a vein. Once he's off TPN no more lines in. Just the tube into his tummy for feeding and some monitoring wires. That should make holding easier.

We've had lots of people lend a hand over the previous weeks both family and friends. Thank you!

Bye bye CPAP

Jules is no longer on CPAP. In fact, he had no "assistance" from about 7:30am til about 12pm today. Just breathing like we all do. However, in rounds today they decided the next conservative step is "high flow nasal cannula" also known as "tubes is his nose with wet fast air." The theory is that his lungs are still immature and could collapse, it's best to keep some pressure going.

They bumped up his feeds to 3.0ml/h. On our way to full feeds in 4 days. Still 2:1 ratio of breast milk to 30 calorie similac.

Blood Pressure (BP) is steadily going down - mean arterial pressure now in the high 50s.

Weight seems to be unchanged, head and length have grown. The doctors think weight is up. I can't see the trend. Basically he has varied between 700g and 770g for the last 12 days.


Can you spot the trend?

Apparently his length has grown by 10% since yesterday. At that rate he doubles every 7 days (remember your logarithms?). He'll be larger than the whole NICU in 10 weeks. So I'm guessing that's measurement error or he's a superhero. And don't get me started about measuring the head. I mean, seriously, a single measurement for an ellipsoid or whatever you call a 3-d ellipse. We want to keep a watch on growth, anyhow.

Oh, and they'll remove his "UVC"(Umbilical Venous Catheter) today. It's 12 days old. I guess it can mess with BP (cause clots and such) and has infection risk. Unfortunately, it got replaced with a PIV (peripheral intravenus [line]) in his head. Gigi had one of those, yuck. Looks gross, but nice big fat veins in there and it's harder for him to pull them out.

Day 12

Stable.

Respiration: Room air

Food: Up to 2.5ml/h (up from 2ml/h). Now 23 calories/fluid oz. They do this by having 2/3 breast milk and 1/3 "30 calorie similac". Breast milk is apparently 20 cal/fluid oz. Ok you got me - 23.3 cal/fluid oz.

Other: Went to parents in the NICU group meeting today. Lots of people in the same boat. Some have it worse; like one twin who survived and one who didn't. I got to hold him, change his diaper and wipe his tuchas. NB: "Got to" is not something that most parents say.

Mood: He seemed cranky today.

Day 10

Things are pretty stable. Here are today's pictures.

Respiratory

He's breathing fine on CPAP on room air. They're also trying just plain nose tubes with high flow (no pressure) and that seems to work too for short periods of time. He may graduate from CPAP in the next couple of days.

Food

"Eating" well. He's up to 2ml/hour, which is double yesterday's rate. No issues to speak of

Blood Pressure

He seems to have high blood pressure. They did an ultrasound to check out his kidneys and to check out the places where the central lines are/were. That came back negative.  We talked to a "senior resident" to ask what they look for next. She said they'd do an echocardiogram, but she didn't know we had already done one. So she said they wouldn't do that again. She then said there are hormonal things they can look at, but that they wouldn't look for those for a few days.

Here's a little tour of his digs (NICU cribz) or click the image below.

From Julian Day 11

Day 9: CPAP and Held By Dad

Another good day

- Switched to CPAP - pressurized mask on his nose, no more tube. We got some great no tubes, no mask pictures during the transition thanks to the NICU staff. If you've ever wondered what the genetic value of my large nose is, wonder no more. The fact that Jules appears to have inherited my massive schnoz seems to have given him a large physical air way into which the CPAP can flow air.

- I got to hold him. See the pictures.

Day 8: Holding Him and Eating

Another good day so far

• we got to hold him. Check out the pictures and videos.
  
• they took out his arterial line so we could hold him
  
• he's now on continuous feeding and they doubled the amount he eats to the equivalent of 1cc 1/hr.
  
• Gigi met him for real and sang him twinkle twinkle little star.
  

day 7: "eating"

Jules had a good day today. Some recent pictures of Jules and Gigi.

His PDA is closed. That's good news since it means that concerns around respiration (or sufficient oxygen/co2) are addressed and it also means that blood that might have been flooding the lungs went to profuse his gut.

He started "eating." The blood profusing his gut meant that he could try eating today. So they started giving 1 cc of "EBM" (expressed breast milk) every 2 hours. That's 0.034 fluid ounces. The way they feed him is by sticking a tube down his throat to his stomach and squiriting in the EBM. Then they wait a little bit and then use a syringe to suck out what's in his stomach. If they see less than what the put in they call it success. And in his case he digested all but a tiny little bit.

His aterial line is coming out. In other posts I mentioned that Jules has an umbilicalarterial line called his UAC. UACs are great for taking continuous blood presures and measuring blood gases. However if you pulled it out he would bleed out or exsanguinate for those doctor types. So that's one reason they don't like folks to hold kids with UACs. His UAC his coming out tomorrow morning. Following that, we're hoping to hold him for the first time.

CPAP coming in a few days. He's basically been breathing room air (no additional oxygen) and they've lowered the PEEP (pressure at the end of the tube located just above where his wind pipe splits to go down to each lung) and they've lowered the tidal volume (the volume of air they push in on each breath) and they've lowered the machine respirations (because he's "breathing over" the machine -- aka he's breathing more frequently than the machine). For all these reasons they think he might be able to graduate to the less invasive CPAP. Think pressurized nose-mask.

Also, Uncle Kirk (Joy's Brother) and Grampop Silver (My Dad) visited. Nana (Joy's Mom) is coming tomorrow.

Joy is healing well. Unfortunately they forgot a staple on the incision, which we had removed this morning. She's feeling a lot better.

Shabbat Shalom.

day 6

This was an uneventful day for Jules.

- PDA seems to have responded to indicine. But echocardiogram results not back yet.
- Respiration seems to be going well, room air via ventilator.

Hopefully tomorrow we'll learn that the PDA is closed and that we can think about graduation to CPAP and or starting to give him breast milk/formula.

He opened his eyes today and seemed pretty peaceful.

day 5: welcome julian "jules" drake silver

Jules had a good day.

- He got a name.

- Almost totally stable on all the interesting numbers. Breathing "room air", aka no added oxygen.

- PDA: Indicine seems to be working and the side effects are muted. They measured little change in urine output (good!) and an increase in blood pressure (could be good if duct closing). The will verify by echocardiogram tomorrow. 

- Cranial Ultrasound: No bleeds. Slight ventricular assymetry which is apparently ok. 

day 4 (long version)

- What's up with the PDA?

PDA detected via echocardiogram, moderate size. PDA is mostly expected in preemies. Standard treatment for UW Medical center is indecine. However other approaches include liquid restriction and ibuprofen. The indicine is up to 2 rounds of 3 courses of indecine. If the PDA doesn't resolve then surgery. While giving indicine they particular look for kidney issues - basically does he pee enough. If urine output is diminshed the treatment is discontinued.

- He had ultrasound to look for bleeds, mostly for baselining

No data here yet, didn't hear back on this yet.

- Can I hold him?

Not yet. lots of debate here. It's really hard to get a straight story as there's a lot of conflict among the medical professionals. There are basically two arguments:

1. baby is not stable, agitatated, etc. This could be visually or some system unhappy.
2. baby has an arterial line through his umbilical cord, if this comes out he could bleed out quickly.

The frustration here is that nurses, nurse practitioners and doctors all do not agree on the obviously qualitative interpretation of (1) nor on the real risk of (2). I've done my normal, presumably irritating, relentless asking of the same question to anyone who will listen.
The arterial line should go away generally between 7 & 15 days. So that will knock out (2) soon.
However, we learned yesterday that we can take his temperature and change his (insanely small) diaper. So this will go part way for this physical need to connect.

- Feeding

They really don't like to feed, near as I can tell with PDA. As far as I understand it, one impact of PDA is to flood the lungs with blood and therefore deny the gut of blood. So the baby probably wound't be good at digesting stuff.
Also the indicine treatment for PDA slows the kidneys. Also something not good to do when trying to feed the kid.

the last 24 hours

Short summary

- Joy is home and moving around well. Sushi need quenched.

- Baby has been stable and a particular, expected defect has been diagnosed as is being treated.

- Many good conversations with health professionals - Joy and I are getting to know the folks treating us.

- No name

a framework for the next few days

this is mostly a thought exercise to see if i can synthesize what the doctors said.

goal is less respiratory assistance and eating food both orthogonal (disconnected) from each other. The goal is to get on CPAP and start "eating" intravenously, hopefully breast milk and formula.

In the way of CPAP are the lungs maturing (should be good to go with second dose of synthetic surfactant), PDA (see bleow) and just baby tolerating it. So slowly they'll pull back on the pressure (PEEP) to see if he can do with less and the volume of air going in and the mechanical respirations. And then if CO2 levels stay good and "other stuff" (that's a technical word). Then they'll extubate (take out the breathing tube) and then try CPAP again if they can resolve the PDA issue. Maybe a few days.

PDA

They may also have to solve the this PDA issue which could be part of the breathing puzzle and blocks eating. Usually PDA resolves normally in most term babies. However first we have to find out if we have this ... so we wait in line behind to use the echocardiogram to validate that this is going on. Then they give up to 2 courses of medicine, indomethacin, over 48 hours. Unfortunately this medicine messes with the kidneys and so they don't want to feed until they figure this out. If that doesn't resolve it then they do some kind of surgery. Let's avoid that please.

What about this waiting in line? Oh right -- there are something like 38+ babies in the NICU. They even turned the regular post-partum nursery into a NICU room. Supposedly they're diverting mothers who who birth pre-term babies. So sometimes we have to wait. Not to worry though, apparently they wouldn't do anything sooner anyhow.

Anyhow, I got to calm baby down today which was fun. And my favorite nurse so far is back on (Ogechi) and he answers questions and gives data. I'm still learning how to talk to medical professionals to give all the data and not just the diagnosis. Joy and I like to hear all the data so we can ask questions. You know..it gives us the fiction of control. :-). So Ogechi humors us.

Suntanning

Two steps forward, 1 step back. Joy seems on the mend. Baby tried to move to cpap. But that didn't happen this time. When he tried to breath on cpap he was working too hard. So they tried increasing the pressure and oxygen content. Subsequently, they took some blood gases that indicated baby wasn't doing as well. So we step back to intubation for now and try again later. We're pushing (gently) to see if he's calm enough for 'kangaroo care" (aka baby skin on mom/dad chest skin) for bonding stuff.

Below is a picture of baby boy suntanning for jaundice. He gets to wear those sweet sunglasses when he's under the light (that's the strange blue halo in the picture).

cpap removal

From Baby Silver Day 2 Part 2

Removal happened. Baby breathing via CPAP. And bonus full face pictures.

gigi's first sleepover

and what has gigi been up to? well, thanks for asking....sleepover with hannah. teacher ted's music class. and then maybe even the tiny tots symphony. thank heavens the Fall overprogramming is in full-swing... (and thank G-d for irene and tal!)

how big is baby boy silver?

His head is the size of my fist.

His hands are about the size of an old half-dollar.

His arms are about as thick as a chapstick.

He weighs about as much as 3/4 full 32 oz Big Gulp or tall bottle of water.

He's about as tall as one of my hands held the long way plus one of my hands held the short way.

rounds (round 1)

Every day the doctors get together for rounds to discuss each patient. I went and talked to them about baby boy.  I got a few questions in until I was kicked out nicely for asking too many questions. They offered an in-room follow-up as consolation -- better for Joy to be there anyhow.

They're looking to get him extubated (take tube out for breathing) and help him breath with CPAP (positive pressure to blow up the lungs). They're cautiously optimistic. 

Another good sign is that the baby may get food tonight. He'll eat TPN for a while and then formula or breast milk. 

He did gain some weight from ~700g to ~750g. That actually wasn't necessarily a good thing. In theory, different scales yield different measurements (scale in delivery room v scale in NICU), so they're not too worried. However they want to see some weight loss, as weight gain may indicate baby is retaining fluid - especially in the lungs making it harder to breath. 

Joy is slowly sleeping on and off to gain strength to wheel into the NICU to seem that unnamed baby.

Joy's Dad and my Mom are arriving in a few hours.

And Gigi had her first sleepover with Hannah, Irene and Tal's daughter who live down the street from us.

Thanks for all the well wishing, food, calls, comments, etc. And Shabbat Shalom.

Baby on his front. Not doing much of anything...

Little Guy in Box

Here's the little guy stretching his fingers out. You can see the ventilator tube in the foreground.
That's his tiny little blanket on top.

5am update

Joy is feeling better, finally sleeping after all that stuff to keep her up when she crashed very briefly (but very scary) 10 minutes after coming out of surgery. 

Baby Boy is in his isolate under the tiniest blanket. Here are some pictures and video of what it looks like.

Blood gases look good on ventilator and it's turned down a lot, so they're thinking the'll try CPAP at 9am-ish. Like those sleep apnia machines just a bit smaller.

We're moving downstairs to 5 at 6:30 or so.

Baby Silver Day 1

Some first pictures.

also see twitter

http://twitter.com/scottsilver (go to twitter)

Just click on the "twitter" link to see short updates that I can post from my cell phone by texting/SMS. And now, you can just look on the left hand side to see the twitter updates.

putting joy in anesthesia. waiting for to go back for c-section.

happening "now"

baby maybe coming today

Things do move quickly. Looks like we're moving towards c-section in 6 hours. Haven't heard from doctor yet, just from the nurses to stop eating.

baby probably coming on Monday

The "team" of doctors here have placed their bets on delivery by cesarean on Monday. The primary reason is decelerations on the NSTs. Basically, the baby's heart rate slows down too much and too frequently during the monitoring.

As it stands now we'll be lucky to make it through the weekend. That would make 29 weeks 6 days (29w6d). Much sooner than we'd like, but sounds like the baby might do better in the NICU than in-utero.

welcome to baby silver 2

Hi folks:

Happy New Year. As we all know this blog wasn't supposed to start until December. In any case here's the place to get relatively reliable updates.

Some data:

Baby is too small: measuring about 25 weeks and it's 29 weeks old now. Estimated weight is 1.5lbs. Probably 2nd percentile. That's officially IUGR. The baby has a pretty good chance of surviving and a reasonable chance, say 60-70% of being "normal" after a few years. Of course, all babies are different.
Joy has preeclampsia. Cure is delivery. It seems managed.