This is just the e-mail I sent out to all my family Saturday (2/26/11).
So now he basically has about 27 cm of small intestine, separated into 2 parts(a newborn needs at least 40 cm). As he grows the intestine will hopefully grow and keep up and eventually (most likely 2-3 months) they'll be able to fuse the small intestine back together. This doesn't mean he'll be able to eat normally after that.
For now they will feed him through an IV. In a few days they'll be able to put a "pick line" in him which will feed into his chest right near his heart. This tube will allow them to feed him more dense nutrients and give him medications and other things. They will feed him TPN, which is just liquid food that has everything he needs. His intestine will still have problems for a few years, maybe 3-5 years. We can't know for sure right now. It will take that much time for his intestine to grow enough to be able to digest the amount of food he's eating. This means he will be fed TPN for the first few years of his life.
So right now he has two holes in his stomach, each one is the end of the two small intestine endings inside. Over time they'll be able to remove spit and other things from the top hole that comes out. Eventually they might be able to feed him, it will come out the first hole and they'll transfer it down to the second hole so it can pass through the colon and large intestine. How awesome is that? Haha. This will be done just to keep his intestines healthy with things passing through them.
He still has an infection right now. We learned that he has e-coli in his blood. That's probably what started the whole chain of events. This will most likely get out of him in the next few days with antibiotics.
Long term Dr. Black said there's no reason to believe he won't be able to go to school when the time comes and run around and play like normal. He should be totally fine after a few years. So there is light at the end of the tunnel already, but we have a million obstacles to hurdle before that!
He also has a little bit of blood in the ventricles of his head. He's at a stage 2 (of 4) in that. They'll watch this closely, but as long as he stays stable post-surgery the risk of it progressing should go down. Stage 4 is bad, right now its ok and can completely correct itself. No blood in the brain yet.
Oh, by the way, this whole intestine problem is called "short gut syndrome". I did not make that up, that's actually what they call it :)
Ok, this email is long and a little scatter-brained. Just trying to remember all I know. That's it for now. We still trust that the Lord will continue to bless us. He already has with this. We know this is the Lord's will for us. I joked with Sarah that we're making up for our relatively easy lives up to this point! We've been so blessed and this will be a great challenge, but a great opportunity to learn and be humbled. We love you all and are thankful for the continued prayers.
-Ryan and Sarah
P.S. Carter is still fine. We went and saw him and he's as well as can be. They will still monitor him closely for any infection, but all is well.