"Obstacles will look large or small to you according to whether you are large or small." Orison Swett Marden

Brace yourselves folks for the latest. Be warned--it's a lot of info.

Yesterday and today we had a bit of a bombshell dropped on us. Isaac tested positive for Cytomegalovirus Infection or CMV. Most of the population actually has CMV--it's similar to mono or a cold--and is quite mild for most people. For those with compromised immune systems it is a very big deal. Particularly for very small preemies.

The Director of Pediatric Infectious Diseases, Dr. Krause, came and talked with us today and explained everything about CMV.

First--how he got it. By far the most likely (and they are running more tests to try to confirm this) is that I passed it to him in utero. 1%-4% of pregnant women will get CMV for the first time while pregnant. 30% of those will then pass it along to their unborn babies. Women who have already had it have antibodies and do not pass it on. One sign of CMV is preterm labor--which would obviously explain the early delivery. There are a couple of other possibilities they are exploring, but the evidence is pointing to a prenatal exposure.

Next--how serious is it. For the 10%-15% of infected babies who are symptomatic (Isaac is--some of his other troubles are connected), we've been told the following: Hearing Loss is the most common abnormality seen in congenital CMV infection, occuring in 30%-65% of symptomatic infants. Vision impairment is also possible. Both of these often don't show up until childhood. 90% of infants who have symptomatic CMV show abnormalities on follow-up exams, ranging from hearing impairment, to mental retardation and cerebral palsy. Some babies who get congenital CMV never have any disabilities, some have multiple problems, and some die as a result of what the infection does to their bodies. There is really no way to confirm at this point where Isaac is headed. There are indicators that if present, often are connected to later, more serious disability. They are currently running those tests and won't have the results for a few more days at least.

Finally--Treatment. Well, the bad news is there aren't many options. One to be exact. There is one somewhat experimental drug called Ganciclovir that has been used in only one study involving infants. The drug significantly helped prevent hearing loss, but that's about it. The bad news is that it has not been tested very much on babies and it has some devastating side effects--mainly a dramatically increased risk for future infections.

They are currently running many tests on Isaac to determine how severe and widespread his CMV is, in order to determine whether or not the benefits of treatment would outweigh the risks. Right now, they think not. (We agree). Dr. Krause is consulting with some of the best docs around during the next 24 hours, including an expert in CMV, to determine the best course of action for Isaac.

Sooooooooooooo........the good news just keeps on coming. We're reeling obviously. It's been a lot to take in. We're experiencing a range of emotions. Of course we want Isaac to be as healthy as possible--but coming from the perspective of being so close to losing him completely (and we are not out of the woods with that yet--especially now) him having a disability--even a serious one--seems a much better option than not having him around.

We've never been afraid of having a child with a disability. We realize that we don't really know what that would entail--but we aren't scared of or opposed to going down that road. Every child is a gift--no matter how they come and deserve a chance at life. We would love Isaac no matter what and he is already an integral part of our family. We just want him to stick around to be whoever it is he's going to be--whether perfectly healthy or very disabled--we just love him.

It's been a little weird for us how the medical staff has approached the idea of disability. We realize that they deal with a lot of parents and not all of them are thrilled with the idea of having a child with a disability. But we're kind of like, "Hearing loss? Vision Impairment? Are you kidding? What do we care if he won't be able to hear, he'll be alive for goodness sake!"

I am dreading "the talk" with the doctors that we're worried is coming about the issue of life support given the risks of a serious disability. We don't in any way want to trivialize the seriousness or impact of any disability--they are significant--but I will take a severely disabled Isaac over no Isaac without the slightest hesitation. No discussion needed thank you. We've already had that discussion when he was born so early (the MD gave us all these awful statistics and essentially asked us if we wanted them to try to save his life regardless of the dismal possibilities--not a fun conversation).

So, we'll see where this road takes us. I was a total wreck last night over it---I was so ANGRY. I'm not sure at what exactly--just so ANGRY in general. I said a prayer and received renewed strength to tackle this. Today I was calm and driven to find out everything I could about CMV and talk to whoever would talk to me about it. Having information and knowing what is going on helps me to feel like I have a little bit of control. It's also keeping me from totally falling apart. I can't think too much about the unknowns--I'm just focusing on what we know, test results as they come, and what comes next.

It's so amazing how quickly your life can change.