Thursday, July 30, 2009


Whew! Just got the kids in bed. I am very nervous about who is going to get kicked off So You Think You Can Dance. Please don't let it be Melissa or Evan!

In all the mental uproar yesterday, I totally spaced on the fact that I was 15 weeks! Score! These weeks are flying by. It was at a 15 week ultrasound with Seth that we found out he was a Seth and not a...well, I can't remember the girl name we had picked. I don't have a 15 week picture to post, but I may get around to it this week. Or not. It depends on whether my hair looks cute.

Can I just digress for a moment and say that it is really, really, super hard to think of a fifth name? To think of something that both meshes with the other kids names and is cool on it's own is proving to be very difficult.


Thanks for all of the kind comments yesterday. For future reference, if you hadn't noticed, a lot of the time I will reply to people right in the comment section, so check back if you wrote something. I really like it, and I like the threaded conversations that can take place. The comment system is called Disqus, and although I think you do have to register, you can use an Open ID, a facebook or even a twitter handle. If you haven't commented since I made the switch, I hope you'll consider if! Once you register, you never have to do it again.


Now for some Seth news. I didn't want to share too many details yesterday, as we were waiting on results from the hospital (and I wanted to speak to John before telling you all), but I've been in contact with Seth's Pulmonologist today, and she reviewed the x-rays from his hospitalization in June and the x-rays we repeated yesterday. In June, his airway showed a steeple sign (picture a triangle, the airway narrowing as you get to the top and closed at the point) , a classic sign of croup. Usually, when the illness is gone, the airway goes back to it's normal shape.

Seth's x-rays, however, show that his airway is still steepled, which suggests to the doctors that his airway issues are anatomical rather than induced by sickness. This could be from the intubation in the NICU, or something else. Since he is already dealing with a nearly closed airway, it doesn't take much for it to close completely. Now it makes more sense that he would literally go from having a runny nose and no other symptoms to struggling to breathe in a matter of hours. Most people can deal with slight swelling that occurs with a cold or other sickness and not really notice it, but since Seth is starting out with a narrow airway when healthy, he can't afford to get sick.

Now that we have a better idea of what we're dealing with, we are set up at home with steroids, a nebulizer, and an assortment of inhaled medicines to treat Seth as needed until we find out the cause of his steepled airway and decide what to do about it. It's really important to treat him at the first sign of anything since we now know how little room he has to play with as far as his breathing is concerned.

Since Seth's ear tubes are also causing him problems, we are trying to schedule the bronchoscopy, where the ENT will send a camera down to find out just what is causing the steepled airway (and what to do to fix it), and replacement of his tubes at the same time. In addition to that, the Gastroenterologist would like to do a PH probe to see if his weight loss could be due to silent reflux. As many of you know, Seth does not tolerate general anesthesia well at all, and we want to minimize his exposure.

Another concern the Pulmonologist has is over Seth's stagnant or negative weight gain, even though he has a very healthy appetite (he eats more than his brother and sister combined), and some bowel issues he has, added to his breathing. She is of the opinion that he might have Cystic Fibrosis, and so we will also be testing him for that next week. She said that after looking at his case history, he is one of the more complicated babies she's seen, and that she feels that at this point, looking at all of Seth's symptoms separately isn't doing us any favors, and that it could a larger underlying issue.

The results from his bloodwork aren't in yet, but that was all to try to find the root cause of his anemia, which is pretty severe at this point. He has been on prescription iron for two months without raising his levels, and at this point the idea of a blood transfusion is being tossed around. Apparently severe anemia can contribute to heart murmurs, and Seth already has a PDA and two PFO's to worry about, so we're all thinking the time to wait and see is coming to an end.

I know all of this is a ton of information, but it looks like Seth is going to be embarking on a whole new litany of procedures and tests. It's going to take some effort to get three different specialists on board in order to out Seth through as little anesthesia as possible, and I would greatly appreciate prayer specifically to help this all go smoothly. In many ways, this is scarier than when we found out Seth was deaf. In that case, it was clear cut. He couldn't hear, and we had a clear course of action to help him. In this case, we are all in the dark.

I know God has a plan for Seth, and I know that we will make it through this, and that there are tons of babies much sicker than he is. But he's my baby, and he's already been through the wringer. I just want him to catch a break.
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