Sound Medical Advice (and an update on the Twins)

First, to get this out of the way:

So now you know! And catheter safety is paramount (really).

One of the biggest risks with a central line is infection and another risk is some sort of trauma caused by tugging or moving the catheter. But just wow! I suppose these videos are geared for kids and their parents and not so much little ones, but now Bekka and I can better resist the temptation to start jumping rope once we get him home.

Now on to the babies:

Isaak is doing pretty darn well. Some of you may have been updated via other means that Isaak was moved to a regular pediatric room last Wednesday. The way it happened was...interesting. We'd been debating making the move for a few days, a new attending came on in the NICU and pretty quickly decided that Isaak really should go to the floor. He no longer has preemie problems (save for a bit of anemia) and the doc had decided that the GI folks could better handle the feed situation. We did not disagree.

Anyway, on Wednesday, Bekka decided to take a day off from the environs of the NICU as she knew Isaak would be well cared for by all the nurses. She'd been told it would be "2 or 3 days" before a room would open up on the regular pediatric floor. That was the status at 3pm on 8/11. At 6, she gets a call that says "we will be moving him in a hour". So not only do we get to hurry to the hospital, we have to pack for Bekka to spend some time there. So we did. We finally made it to the hospital to find him zonked out in the bed and sucking merrily on his paci. That was a hectic evening.

Ever since, he's been ensconced on the 6th floor of the North Carolina Children's Hospital under the watchful eyes of his mommy. Little sister has been there with them every night save one, when daddy and Nana and Papaw brought her home so mommy could sleep without having baby grunting in stereo running all night long. (Apparently it's tiring. Who knew?)

Medically he seems to be rapidly improving since Friday. He was on 10ml per hour via g-tube for a week as they monitored the level of "reducing substance" in his stool. (Poop. You KNEW there was going to be poop, right?). This test measures the body's ability to absorb sugar in the intestinal tract and is an important indicator of bowel function. For several days, he was running high values (0.5 or greater g/dL). Yesterday, he finally dropped down to 0.25. Now, this doesn't mean that he wasn't processing fats and proteins, just sugars but it's a good test looking at how things are going. Since he hit 0.25 for 2 days in a row, on Monday they upped him to 12ml/hr of 50% milk and 50% Elecare (an elemental formula). If he has a good test tomorrow, he will likely get bumped to 13. They left his TPN where it is so he could get a few more fluids.

He's gaining weight well at roughly an ounce a day, and that's a good indicator he is also getting nutrition from the g-tube feeds. If he wasn't absorbing something, the TPN doesn't have enough calories to keep him growing. Do we think he'll be off TPN before coming home? Probably not. We are at the point though where we'd like to get our little guy to the home and used to be being in a non-hospital environment. He would likely be looking at many months before getting to strictly oral feeds, but you never know. The next big step for him will be trying small bolus feeds, both via g-tube and orally. Ideally, when he comes home, we'd be able to feed him orally during the day and then have g-tube feeds overnight.

His poop is looking better, too. A little color has started showing up in it and that corresponds with a sudden change in his overall color. He's still jaundiced, but the change from Friday to Saturday was pretty stunning. Apparently, much of the color in poop is the body ridding itself of bilirubin (I did not know that) and we hope that his body has decided to get better at doing just that. The TPN is still not good for his liver, but he'll be so much better off if he can dump the bili.

In other news, Isaak's edema seems to have completely disappeared. Much like Penny, he just started peeing a couple of weeks ago and hasn't stopped. This is excellent since he has the IV in all the time. He also appears to be working through the anemia (At last! We hope.) His last hematocrit was only 0.1 lower than the previous (so effectively the same). Hopefully his next will trend higher. Also, his eye exams are starting to look gradually better. The left eye is still the most concerning, partly because there is a hemorrhage concealing the retina in a couple of places. Hopefully that clears up more this week so they can confirm that the eye is still maturing.

Penny has been her usual rambunctious self. We'd like her to be gaining weight a bit faster, so we have just upped the quantity she is getting in her bottles to almost 3 oz. She gets 3 of these a day, all fortified with formula to 24 calorie. Bekka also reports that she is getting better and better at nursing. We have to remind ourselves that these little guys have to practice and get stronger and that they were only due last week! Her only other issue is a worsening of the RoP in her right eye. It's a little unusual for that to be happening at this age and stage of development so she'll be back next week for another checkup. Hopefully nothing to worry about but it's important to stay on top of that issue.

I think Bekka and I are mostly staying sane. She's spending all her time at the hospital save for Penny's appointments and when I spirit her away to escape for a bit. It's very challenging taking care of two babies but there is something to be said for not having to drive back and forth to the hospital every day and getting to stay in the same space at night.

In a complete aside, did you know that at the state's preeminent public hospital (PUBLIC), patients have to pay $8 a day to park. WakeMed was FREE for patients and Duke was only $2 a day when we were there with Ollie. Just amazing. They have their excuses and they all suck. I can only imagine how many patients can't actually afford that. Serving the state well there Carolina...