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.