6 lbs 13 ounces

His sugars are much more stable, and they are starting to talk about a going home time line!

Isaac is off of the glyburide and has been for 24 hours. The doctors (and Jonathan, who put the data in a spreadsheet and graphed it) didn't think it was affecting his sugar levels much. Going to keep an eye on him during the day today, and if his sugars shoot back up then perhaps the glyburide was playing a role...but I don't think it will.

He's on Lantus twice a day, and none of the regular quick acting insulin. This morning his sugars were actually a little on the low side, so there's still some tweaking still going on. His doctor commented that in a week he will likely need the current higher dose with the rate he is eating and growing. They aren't used to such great eaters, but this is a typical Ellis kid for me.

Things are looking very good. I am a happy mama!

Quick update

Isaac does well on the Lantus, but at rounds yesterday they said they were taking him off of it to see how the glyburide (the sulfonylureas) affects him without the Lantus muddying the waters.  This week's neonatologist (a new guy, not Dr. Chan) pointed out that even if the glyburide just reduces the amount of insulin he needs, it's still worth it.
He was up to 6 lb 5 oz.
Yesterday morning was the first time I've fed any of our newborns.  Rachel took the older kids for some Mommy Time so I went up with Grandma (Linda) to see Isaac and bottle-fed him.  He was very alert afterwards, just looking around and chilling with me in the rocking chair.  He fell asleep just before it was time to check his glucose again.  At least at 11 he didn't need more insulin, so he just got a shallow poke.  Then Grandma took a turn feeding him and he fell right asleep.  In the evening, it was Rachel's turn to go up.
Rachel pointed out the other day that little Isaac's already had far more needles in him in his two weeks of life than she has had in almost thirty.  Poor kid.

Isaac Update

Yesterday afternoon, the doctors decided to try the long acting insulin, Lantus. The long acting insulin acts kind of like the form of a mesa. The insulin level jumps up sharply, plateaus for roughly 12 hours and then drops down. Judging by his glucose levels, which were all in the low 100s to 200s throughout much of the night, he responded beautifully. He did need a small dose of insulin (it's on a sliding scale and is determined by his latest glucose reading). This morning his sugar reading jumped up again to 430.

Today he has the blessing of two endocrinologists to start the sulfonylureas treatment. According to the endocrinologist it has about a one in four chance of working, and if it works, it works much, much better than insulin. We do know he is able to make very low amounts of insulin. His C-peptide test showed that. This gives me some hope that it is the transient form. It's also oral so if it works, it will save him some pokes. The doctors had to wait until 3 PM to start to make sure the Lantus had completely worn off. Otherwise if it works, it could drop his sugar too dramatically; something his doctors have been extremely careful to avoid. So he is back to the 6 hour insulin doses on the sliding scale.

Speaking of pokes, yesterday they brought up a glucometer to in order to use less of his blood with each glucose test. When the phlebotomist does the testing, she has to use a small thin tube of blood, a glucometer requires just a drop. The glucometer is slightly less accurate, however, and you can't get the K and Na readings from it. The charge nurse didn't approve the glucometer because there isn't any protocol for the NICU department. His doctors were dismayed when they learned that the glucometer had been removed, so his fellow, Dr. Z, talked with the person in charge of the entire NICU and got a special exception for Isaac. When/if his blood glucose levels get below 80 or over 400, then they will also use the regular lab reader.

I listened in on rounds today and they also discussed allowing demand feedings once his blood sugar is better under control. Currently he is bottle fed or nursed every three hours. Before he can eat, his blood is drawn and tested. (His poor fingers and heels are covered with little bandages) Then his insulin is ordered up if it is needed. Unfortunately the insulin must be diluted for him and the dose varies each time so it can't be made up in advance. So the NP writes the order, the bedside nurse sends the order down to the pharmacy, the pharmacy sends the insulin up to the floor, and the bedside nurse must then pick it up. Then she must confirm the dose and patient with another nurse, and finally he gets his insulin and can eat. This is a process that can take as long as 45 minutes. Meanwhile poor Isaac is getting hungrier and hungrier. This morning I bounced him, rocked him, gave him a pacifier (which he rejected), my finger which he accepted for a while, talked to him, and tried every distraction technique I could think of. He didn't cry but was clearly rooting, smacking his mouth, and looking for something to eat. He is a very patient baby. My other two would have been screaming full throttle if required to wait.

Here's hoping that the sulfonylureas works!

Short update

I went back to the office yesterday so this is second-hand via Rachel.  I'll just give a summary and Rachel can fill in details later if she likes.
The doctors decided that the short-term insulin just wasn't working on its own, and gave Isaac a dose of slow-release insulin as kind of a baseline.  Then they supplemented that with additional short-term doses.  His glucose reading was in the 100s and low 200s all day and night, and at least once he didn't need the extra short-term shot.
They also got Isaac a glucometer that just needs a small drop of blood to read instead of a pipette's worth.  A pipette is already pretty small but this should make things just a little easier on him.
Isaac continues to eat well.