Sick baby

It appears we're in for a long haul. Micah had a terrible night last night (thanks, Mark, for taking one for the team while I rested at the RMH). GI decided to try a new formula today, LOL. Okay, I'll play along, but I'm pretty sure that's not his issue. Sure enough, after less than an ounce he was writhing in pain again and that has lasted all day. He's hardly had any food since Saturday at 2pm. And he's just on IV fluids tonight. This afternoon he spiked a temp of 102, but it's been down ever since.

I'll try to update more tomorrow, but I need to sleep since Micah is sort of quiet right now.

Micah's GJ-tube

Micah got a new tube 3 weeks ago. Apparently that tube was not positioned correctly to start with, or it has somehow dislodged since then. This is likely the cause of his significant pain over the weekend. Funny... he had an abdominal x-ray on Sunday in the ER and the ER docs said the tube was in the right spot. But this morning in radiology, they looked at the same film and said it didn't look right. Of course, the specialty radiology dept looks at these things all day so they can tell pretty much right away by looking at a film. It's not a huge surprise that an ER doc wouldn't know if it was in the right spot or not. But they shouldn't have said it was good without knowing for sure. They actually considered sending us home last night!

Poor baby was so dehydrated they couldn't get an IV line into him. After tries by two phlebotomists, they had to call in the expert from anesthesiology. He finally got a line at 12:45am and got a large push of fluids which he's still getting on continuous drip. By 7:30am he still hadn't urinated (they needed to test it), so they put in a catheter and STILL couldn't get anything. All was better a few hours later, but he was incredibly dehydrated.

He didn't cry at all overnight. It was as if he was thinking, "Finally... no belly pain."

We're here for a couple more days, I think. Micah is getting some milk via his J-tube, as well as IV fluids. The rate of milk will go up consistently until he's at his recommended volume (which he'll hit around 11pm tomorrow night). If he tolerates that overnight tomorrow, then we go home and all is well. But the prevailing thought of his GI doc is that there are other issues going on in there. So we'll see if he hits a wall before hitting his full volume.

Mark is kindly swapping with me tonight and he'll sleep in Micah's room. We were again fortunate to get a room at the Ronald McDonald House (they called last night at about 7:30 saying someone had just checked out and we could get the room if we could get there in 15 minutes... Mark slept there last night). So tonight I get a night of sleep tonight away from baby noises and pump beeps. G'nite!

Back in Milwaukee

Yes, it's another fun night at Children's Hospital. Micah's belly pain has been getting consistently worse. Now he can't even tolerate feedings or even pedialite (after his pump runs for 1/2 hour or so, he starts screaming), so we're here for at least one night. He's about to start getting IV fluids. I'm staying in his room with him and Mark is at the Ronald McDonald House (we don't know how long we'll be here, so we thought it prudent to take the room that opened tonight). Micah's next door neighbor's family is REALLY loud and I hope it doesn't affect my ability to get some rest (too late, as you can see by the time of my post... I had tried to go to sleep at 9:00 when I finally got Micah to sleep).

Please pray for wisdom for the doctors to figure out why Micah is having so much discomfort. I'll share more info tomorrow.

Too ambitious? 31 for 21

As you can see, it has taken me 11 days to post something new, so I'm definitely not one for daily blog updates. But, I think this is a good motivation for me to do so for the month of October. There are 31 days in October. The 21 stands for the extra 21st chromosome possessed by those with Down syndrome.


October is Down syndrome awareness month. We also found out last year in October that Micah has Down syndrome. So it seems appropriate for me to spend this month helping to raise awareness about Down syndrome on my blog. I don't think I'll focus on Down syndrome every day. But I'll update the blog more often.

Anyone is welcome to participate, even if you don't know someone with Down syndrome (though if you read my blog, you "know" Micah). :-) So feel free to visit Tricia's blog to get the button and join the October blogging adventure.

(BTW, new photos will follow soon)
And just a reminder... you can "subscribe" to my blog by entering your email in the box on the left column (under all the family photos). Follow the instructions and you can get an email each night that I actually do update the blog (thus eliminating the need for random guessing on when I'll be responsible enough to post an update). The full blog posting, including pictures, comes to your inbox so you can read it at your leisure.

9/11

Where were you? Most of you probably remember that day well. I won’t go into my story of that particular day. It was the rest of the week and the following week that had the biggest impact on me.

Some co-workers and I loaded a van with supplies and drove up to NYC a couple of days after 9/11. As we left Florida, we drove through a tropical storm. We stayed overnight at a co-worker’s parents’ house in Richmond, VA, the first night. Then we drove past the Pentagon on our way to NYC. D.C. was eerie. But not as eerie as NYC. Driving through New Jersey and looking East to see a big gap in the skyline just made my stomach sick. Other prominent memories: driving into Manhattan without traffic, seeing people walk around the streets with photographs of their loved ones, making more eye contact with New Yorkers than all previous trips combined (compared to the task-oriented, stare at your feet sort of walking), daily prayer with about 100 Campus Crusade staff members before heading out for the day, staying at a hotel where lots of firemen from around the country were staying, getting off the subway at Wall St. the first day the subway was open and smelling the “air,” flying home from JFK with all the security increases and still getting my keychain through with a pocket knife on it. Mostly, though, I remember the heaviness of just being there. The world would never be the same. Or would it?

One of the things I did while in NYC was phone interviews for a website we put up for spiritual support for people affected by the tragedy (who wasn’t?). I spoke with a partner at a major financial services company who just wasn’t sure if he wanted to EVER go back to work because he was questioning the validity of what he had been striving for. He had lost friends who were at work on 9/11. A good friend of his would have been in the wrong place and the wrong time if it weren’t for being late for work due to attending the football game the night before. I spoke with someone who would have been in the wrong place at the wrong time if it weren’t for him being at a Bible study that morning that “just happened” to run long because it was the first meeting of the new season. I spoke with someone whose friend left her office to get a cup of coffee and chose to actually leave the building instead of get a cup of coffee in one of the many coffee shops inside the Trade Center.

I’ve frequently wondered what has happened to all these people whose lives were spared or significantly impacted that day. I was very fortunate to not lose any friends that day, but they were not so fortunate. Did the shock and horror of it all diminish in importance? Did they eventually go back to the 80-hour weeks they were working before? Does it still impact me? It definitely does on 9/11. I do think that 9/11 impacted the way I viewed the importance of my corporate career compared to the importance of my family. Has it affected you?

8 months!

Micah is 8 months old today. If you haven't met him, I hope you're able to soon. He's a sweet little boy who breaks into a huge smile if you get close to him. I'll try to post some pictures after tomorrow's BUDDY WALK. If you'd like to support Micah's team tomorrow, either let us know that you'd like to help out (to ARC Fox Cities), or contribute with a credit card by clicking the link in the upper left of this blog page (yes, FirstGiving takes a portion of what you contribute by using this medium).