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.