A Second Birthday

Bringing Isaac back from the hospital is like a second birthday. It is wonderful, wonderful, wonderful, to have him home again! I like hearing his little chirps and grunts in the night and it is much nicer to wake up to nurse him rather than go to a pump. We check his blood glucose levels every three hours and he receives a minute dose of Lantus twice daily. His levels were great through the night, but climbed sharply this morning, so the endocrinologist advised giving him .75 units rather than his usual .5 units this morning. (You have to have eagle eyes to draw up such a tiny amount...) Checked again 30 minutes ago and his sugars are back to a respectable level.

Isaac also gets NaCl 4 times daily (mixed with milk to get it down) in order replenish that which he loses in urine. I've also found that I still need to pump some, despite Isaac being a great eater, so it works out. Our freezer has a good sized bin overflowing with milk containers that I pumped while he was in the hospital. I'm pleased that I was able to keep up with him and then some.

He's now about 7 and a half pounds. Between Thursday and Friday night he put on 205 grams. The nurses couldn't believe it, so he was weighed 3 times. I think this child would have been a good 8+ pounder at birth if it weren't for the diabetes.

While it is great to have him back, whatever I was drawing energy from these past two weeks seems to have evaporated. I am tired. Happy, but tired. The thought of getting behind the wheel of a car feels a bit too daunting right now. I don't even want to get dressed!

But Isaac is home and I am at peace.

Endocrinologist

Spoke with the endocrinologist today. He showed me some insulin graphs. Apparently even on Lantus, individuals who don't produce insulin will have higher peaks and valleys. Isaac has been fairly stable, leading the endocrinologist to believe that Isaac is able to produce more insulin now. He does well for about 18 hours on one dose of Lantus and then the endo theorizes that his pancreas cells give out and the Lantus also peters out. It trends upwards fairly sharply after that point. I asked about doing another C-peptide test, and he said that was something we could definitely do down the road. It would show whether his insulin levels have increased, but he was sure just by looking at his glucose levels that he was producing more.

Great news! Perhaps, perhaps, this is transient diabetes. Still not possible to tell, but maybe! At any rate he only needs a small dose of Lantus, so that in and of itself is great.

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.

A couple things I haven't mentioned

Little Rygg's oxygen was a little low when we arrived at the ER, so first they put a little oxygen blower by his face, then put a more serious-looking set of nasal tubes around his head.  He's been on it since.
When we got back to the NICU this afternoon, they told us that they've postponed the PICC indefinitely since he's responding so well to the IV insulin.  He probably won't need the PICC after all, which is good because there's a long list of things that can (rarely) go wrong with that.
His last two glucose measurements were 163, then they stopped the insulin, and just now 106.  Now Rachel gets to feed him.

NICU

The doctor at the Newborn Intensive Care Unit says that she has never seen this before either but she found some papers describing similar cases, and it's likely that it's a temporary hyperglycemic condition that he will grow out of on his own within a few months.  They will put tubes in his bellybutton and give him insulin to stabilize him, which should take 12-24h.  Then Rachel can start breastfeeding him again, and after a couple days of stability we can take him home and start doing the blood test and insulin shot thing.  Then eventually he won't need the shots any more.  That is the plan, anyway.
Unlike in the ER they won't let us back until they are done putting tubes in his tummy and catheterizing him.  Rachel heard him crying on the intercom when they talked to the nurse; a fresh stab through her heart.
They have "parent rooms" for parents to sleep in overnight but they ran out.  Couch time.  And floor time, because there is only one couch.