update:

I started this Saturday night:

Emily and Abby have each had good days in their own ways. 

Abby went for her line first thing this morning.  Her Dr. put the new Broviac almost where the old one was.  It looks good, although a little more menacing to me because of it's double lumen.  The subclavian came out, so line-wise, I think we're good. 

Abby's alright, but she looks a little thin to me today.  She's responsive and happy that her grandparents have been here.  This evening she's been very nauseated and the belly is swollen some.  We're venting her and trying to keep everything going in nice and slow.  So far, it's only been meds.  If that's an indicator, she's being typical Abby. 
 Now, Emily.

First, she went for a PICC line this afternoon.  They put it in in the ICU --which is a very nice new unit--so we spent about 3 hours there today.  I was thankful that we didn't stay there--as nice as it is, there are some very sick children there.  She couldn't have done better!  It went in with the first stick and she woke up with no problems.  Thank you Lord!  I also brushed her hair while she still sleeping from the anesthesia, this is both funny and a blessing, because it was a MESS!! 

Sunday morning:

Emily was supposed to go to get a special tube placed to move past the blockage this morning, but for whatever reason it didn't happen.  That happens a lot.  We think one thing is going to happen, but it doesn't or something different goes on.  It's one of those things that I expect a little in the hospital, but has proved to be very difficult when I have twins here.  I'm trying to make sure I'm there with each of them for procedures or tests, for them and to make sure I understand what's being done. 

When I came back from Abby's surgery yesterday, Emily was gone.  I didn't know where she was or that she even had a test ordered.  She had gone for an upper GI to confirm her diagnosis.  When I got down there, they had already injected barium into her stomach.  I had just had a conversation with the surgeon about NOT putting anything in her belly so I was worried.  It turned out okay because they did indeed confirm SMA syndrome and then pulled the barium back out. 

So far, Emily is on for tomorrow morning for the tube.  She continues to have quite a bit of drainage from her G-tube, but that's still normal.  She is much more comfortable and will change from Morphine to Toradol today.  I hope to get her out of the room to the playroom too! 

She started TPN with lipids last night.  I know she needs it, but seeing that bag hanging again for another one of my children made me cry.  It just hit me suddenly that we are doing this again.  Seeing it made me recognize that she was in for a long haul. 

Dr Guedes (our beloved doctor), said it's not unusual that children like Emily and Abby would have complicated medical conditions or that they would be difficult and time consuming to manage.  It was unusual that we went for such a very long time with so few problems and hospitalizations.  It's like they are making up for lost time. 

Emily will be on suction for anything up above the blockage (Kathi---you had to put that suction tube in my bag--in case I ever needed it, right?!!!! lol :)  and feedings directly into her intestine below the blockage.  This could take a few months to get resolved.  There's the potential for numerous problems with what or plan is that I won't get in to today.  But the bottom line is that if it doesn't work, she would need a surgery to reroute the bowel.  We pray we can avoid this because it has very serious risks and a potentially difficult recovery period.

I was able to leave the hospital last evening for a while.  I wanted to get my gross swollen eyeball out of here!  I took Hannah and Sarah to dinner and got them some groceries.  They are doing well and handling this as good as anyone.  They are both concerned about their sisters, but we all are hoping for home by the end of the week.  I was telling Sarah how sorry I was for so much confusion because I know she is a creature of habit.  Offended, Sarah replied "I am NOT a creature of habit.  I just like to have the same routine everyday".  I, of course, apologized for the misunderstanding :))

I've gotta go take care of my girls, but please continue to pray for us.  I have absolutely no idea how to do this.  It's never happened before.  The Grandparents left today and Jeff goes tomorrow.  Then it's me.  This is a very good time to deal with tomorrow, tomorrow.