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.