Life got busy

But I am back and will continue with Bean's story where I left off.  

That Friday Bean turned 2 weeks old.  His blood glucose continued to swing rather wildly so he was still far too unstable to take home.  Rarely, rarely neonatal diabetes is associated with neurological problems and heart defects, depending upon what specifically caused the diabetes in the first place.  At this point we didn't know so the neonatologist leaned on the side of caution and ordered the ultrasounds just in case.  

At two weeks of age I wrote:

Two Weeks Old

Hard to believe, it seems so much longer...

Glucose levels are all over the place ranging from the mid 200s to over 500. A normal baby's glucose ranges from 50-100. The doctors are trying get it around 100-200. Going to start the long acting insulin Lantus again, which seemed to work pretty well. One of the docs said he's going through insulin like water. On the bright side they now have a pre-diluted solution of insulin upstairs that the nurses can draw from rather than waiting for the pharmacy. So much faster! They've bumped up the sulfonylureas (glyburide) to the maximum dose today...so far nothing. Sigh.

He had a head ultrasound yesterday to rule out very rare Bad Things sometimes associated with NDM (I didn't ask and I didn't want to know). I asked about the radiologists report during rounds today. Dr. Z said reassuringly that it looked perfectly normal. Dr. C, with a gleam in his eye deadpanned, "Well, normal for your family anyways." Wasn't expecting that one, so I didn't have a good retort at the tip of my tongue. I just shook my head while everyone else had a good chuckle.

Bean graduated to a crib since he doesn't need a warmer. He still eats very well, downing 3 to 4+ ounces at a time or however much he nurses. For once having an overabundant supply of milk is a blessing. The refrigerator and freezer at the hospital are well supplied for Bean.

Later I delved into some research and read about the "Very Bad" things that could happen.  I was glad to learn about it after the normal results came back and not before.  Most of the time though neonatal diabetes presents alone or with minor things like macroglossia (big tongue) or an umbilical hernia.  

Friday and 1 week old

We drove home with an empty car seat in the back seat. 

Mom took the other two kids and kept them busy so Jay and I could rest for a few hours.  We explained to them that their baby brother got sick and was in the hospital, but he was there so he could get better and come home.  They took the news pretty matter-of-factly, and weren't too concerned.  

I wrote:

Update
Called the NICU, Bean's blood sugar is finally dropping significantly. When it gets below 200 they will be able to feed him and see how he responds.

When Jay wakes up, we will head back, and I will pump some more for Bean.

Jay wrote:

Progress 2

Came home from the hospital from 9 to 1 to rest a bit. Checked in by phone and his sugar was down to the high 300s. Normal is around 80-150 in a newborn. Got back to the ICU and it went down to 280 260 240 208. They check it hourly. So it looks like next reading it will be under 200, at which point they are going to stop the insulin, wait an hour, and let Fay nurse him and see what happens to his sugar level.

Best case scenario, the insulin he's already had will be the jump start his body needed to get things figured out and he'll be all set. More likely, the endocrineologist thinks he will need insulin shots for a few months. "Transient neonatal diabetes." They need to switch him to shots so we can take him home. Actually there will be two transitions, the first to "normal" insulin shots and a second to "long duration" insulin after they're sure he's not going to swing the other way into low blood sugar from the insulin, "which is where you get the siezures" and other Bad Things so we are all for taking things slow and steady.

The just wheeled in an ultrasound machine to see how his pancreas looks. "I'll take the images, and the radiologist will review them and dictate a report." So we'll have to keep you posted on that.

Actually the doctors were hopeful it would turn out to be transient neonatal diabetes, but we had a roughly 50/50 chance.  Unfortunately there isn't a way to determine clinically which it is.  That's where the genetic testing comes in...

More Jay:

A couple things I haven't mentioned

Little Bean'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 Fay gets to feed him.

Unfortunately after feeding him his glucose jumped up to 280, the nurses gave him a shot of insulin, but it shot up to over 400.  I think because he didn't have enough subcutaneous fat to disperse the insulin properly.  This kid had no fat to speak of.   

Jay:

Some negative progress

Baby Bean's next reading after nursing was 280. They gave him an insulin shot, but the next reading after that was in the 400s. So they started the intravenous insulin again.

They're going to stick with the IV insulin for a while now but they're going to let Fay continue to feed him. I don't know when they want to try the shots again.

I can feel a sore throat coming on. I gargled with salt water but Rachel's mom will be going up with her for a midnight nursing run.

Fortunately Bean was able to latch on and nurse right where we'd left off without any difficulty.  He was placed on a three hour feeding schedule with glucose checks before eating.  It was so nice to rock and nurse him.  It brought a smidgeon of normalcy despite all of the tubes, wiring, and worry.