From: Kraig Warnemuende <ad6075@wayne.edu>

Date: Sat Mar 22, 2003 9:08:39 AM America/Detroit

To: Kraig Warnemuende <ad6075@wayne.edu>

Subject: 03/21/03 Update from Kraig, Loren and Keren

Dear All,

We're home!!! Actually, we got home Wednesday afternoon and let me tell you it was the most wonderful homecoming I've ever experienced. It was just so nice to have Keren back with us, to not be at the beck and call of doctors and nurses, and to not have Keren connected by wires and IVs to monitors and machines!!! We're settling back into the home routine very happily....with a few pleasant changes to the home routine....

All aspects of the jaw distraction went well. Keren stayed in the ICU till Monday morning, but that was mainly because there "was no room in the inn" (the regular hospital rooms). This turned out to be a good thing, because though neither Kraig nor I could stay with her at night we knew there was one nurse in charge of her and one other patient as opposed to the regular rooms where nurses have more patients to look after. Also, though I did get to stay with Keren Monday and Tuesday night in the regular room, it was not exactly accommodating--I had a reclining chair to sleep in--yeck!!! Not to mention, every time the nurse came in to check on Keren she felt obligated to let me know: "I'm going to take Keren's blood pressure now..." "What! Oh, yeah, sure.... Thanks for waking me up to let me know!" However, on the good side, we had wonderful nurses to work with, and Keren was able to get the pin arms (the ones in her mouth that stuck out so we could turn them and move her jaw out) removed before we came home. The rest of the hardware will stay in about two months until her jaw is completely set, but that will require only an overnight for removal. None of it shows--it's all internal.

It's been so strange looking at our little girl with her new jaw!!! In some ways she looks so different. We're getting used to it really quickly, though, and it's so great to see her breathing easily and keeping her oxygen saturation up even when sleeping. That's been one very pleasant change.

Another change is in feeding. Keren came home with the ng tube (nasal feeding tube) and so we're able to give the majority of her feedings through that. She's still getting the hang of her new jaw structure, so to say the least she isn't getting very far on the bottle. I work with her about 15 to 20 minutes on the bottle during each daytime feeding. We'll also be getting some instruction from occupational therapy as to how to strengthen her mouth muscles so she can get better at that. Hopefully she won't get so used to using the tube that she won't try the bottle at all! We want her to keep working at the bottle since it will help her developmentally. The feeding tube is a blessing, 'cause I just hook her up to that after we've worked with the bottle for a little bit, sit her in her seat right by me, give her some toys to play with and get to work on what I have to do--kitchen stuff, dinner, email, housework, etc. Hurrah!!! Also, now at night she can sleep and we just hook up the milk and let it run.... She slept the night through last night and so did we! I think we're going to be very spoiled soon. We'll keep the ng tube in until we can get the stomach feeding tube put in (hopefully at the same time the rest of her mouth stuff is removed). The one problem with the ng tube is that Keren's spitting up more so we have to be careful how much we give her at a time and how long we let it take. We think when we get the stomach tube we'll also get the fundo (stomach wrap), 'cause that should stop the reflux. I'm so tired of always being careful that she's sitting at a certain angle so she won't spit up as much. She's getting to the point where she likes to lie on the floor and squirm and kick, but we have such small windows of "safe time" where she can do that....

Well, I think that's the scoop! Keren's been doing well since she's been home (she seems much happier than she did at the hospital). We're noticing more little developmental steps--more smiling, more batting at toys and interaction. It's fun to watch and exciting, and a neat answer to prayer since we were a little afraid surgery would put her behind again. God is good!

With love,

Loren for Kraig and Keren, too!