Micah's bathtime pictures

Here are some pictures of Micah's bath (or, more accurately, immediate post-bath), as promised.

Pictures added to post about Spencer's funeral

Melissa's cousin Megan Wilcken kindly provided me with some pictures of Spencer's funeral. I've added them to our original post about the event (under "April"). Thanks again to everyone who came and supported us!

Quick update: May 28th

We were able to give Micah his first non-sponge bath on Sunday. He really enjoyed it. I'll post some pictures tomorrow. He's doing well, all things considered, and is reasonably good at nursing when he decides it's worth the effort. Unfortunately, he's still quite content to receive his food the easy way (i.e. through his nose-tube while he sleeps). Oh, well: baby steps to coming home, right?

Update with pictures

Hi all. Our updates of late have been distressingly picture-free, no? I'll make up for the lack in this one. Melissa's been our primary blogger over the last month or so as I've been buried at work.

Melissa's living in the Ronald McDonald House in Salt Lake City until further notice. The order of the day (week) (several weeks) (month) is to teach Micah to nurse. In all other respects, he's ready to come home. He's still on a little bit of supplementary oxygen (30% on a half-liter flow, which isn't much), but we can certainly take him home with an oxygen bottle. At this point, we'll be happy to take him on any terms.

If Micah can't learn to nurse consistently (or if his stomach continues to give him trouble), he'll need to go to Primary Children's Hospital again so that the docs can install a "G Tube" device. This, essentially, is a little port in the tummy through which we'd feed him directly. Just plug and feed, pretty much. It's a pity that these can't be installed electively in 6-, 4-, and 2-year-olds. Bypass the taste-buds, and they might actually eat something other than peanut butter and honey. :-)

Here are some recent-ish Micah pictures:

Making up for lost time

Hi everyone,

I guess two blogs in one week wore me out, so I had to pace it better ;) Actually, I just haven't taken the time to write. On may 1, after being transferred to Primary Children's Medical Center the night before, Micah underwent surgery for his head. In the 10 or so days before his head had grown 2 centimeters-normal growth is less than 1/2 centimeter per week. I think it took a while for the docotrs to catch it because his head was swelling up, not out. The weekend before they called in the neurologist to look at it, for me and his primary care nurse, it was visibly bigger. Anyhow, the ppor guy was not very comfortable. (His brain ventricles weren't draining the fluid correctly, so his brain was swelling with all of the extra, which causes quite a lot of pressure to his head, and can damage the brain itself-it's called hydrocephalus, or water in the brain).

The surgery involved placing a shunt in his head. They stick a tube through his skull, into the ventricles. Connected to that tube is a valve, which controls the amount of drainage so there isn't too much or too little. Connected to the valve is a very long tube that goes under his scalp, behind his ear, down the front of his body, and into his stomach. (all of this is beneath the skin). The purpose of this is to allow the fluid to drain from his head, relieving the pressure, but retaining the fluids within his body, so he is not constantly replacing the lost fluid. It is a permanent procedure. They coil enough tubing in his stomach to allow for growth up to a certain point, at which time he would have a "shunt revision".

He had to go back on a ventilator for the surgery since he was put completely out, but was off of it and back on his nasal canula by wendesday afternoon (day after surgery). he looks so much better, so much more comfortable. Before, it hurt for him to even yawn, and now he has discovered that it doesn't even hurt to cry....so he does.

Seth was able to take Tuesday morning off of work and be there with me, which I very much appreciated. I think the hardest thing, even more than the actual surgery, for me, was switching hospitals. Primary's is great, but there are a bunch of little differences that I had to make adjustments to because I was so used to UofU's NICU. Even the alarms sounded different....basically an airport (ding ding ding, you may now move about the cabin) noise, to a freeway (honk, honk honk) noise. Neither one enjoyable, but you get used to it after awhile.

Micah did so well that he was ready to be transferred back to the U Wednesday afternoon, but because of staffing issues, he wasn't transferred back untill the following Wednesday evening. It was like going home....t our home away from home. Everyone at the NICU welcomed us back. One nurse mentioned being glad to have my smiling face back....I'm glad i've been able to smile enough that people noticed.

I've also been able to try nursing a couple of times. I think as soon as we get our timing down (Micah awake at the same time I have a milk supply) we'll be able to catch on a little more quickly. He i still on continuous feed, so he is never hungry, which surprisingly actually makes a difference. :)

On Monday they are going to try to turn his NJ tube into an NG tube (move the tube out of his intestines into his stomach). Hopefully his stomach will start working and we will be on the road to eating, which means we will be on the road to going home. Hopefully.....I guess we'll see.
Anyhow, I guess that is all up to now. Oh yeah, one more happy thing! RSV season is over, so as soon as my boys are healthy, Micah and his brothers will finally be able to see each other. Hip HIp Hooray! Our whole family in the same place for 15 min.! (that is the time limit for children to visit siblings, twice a week).

Again, thank you everyone for your prayers and faith....I have literally felt their sustaining power, and witnessed the miracles they have given us.