Alex gets a G-tube :(

Alex has surgery today...I had them move it up because the kid hardly takes ANY fluid at this point. The good news: the bottles and swaddling are gone! The bad news: Alex: needs surgery and will stay at Community North for a few days. There is a "moderate" chance this could make his reflux a lot worse and the profuse vomiting will come back. Pray for a safe surgery and for Alex to tolerate his new feeds. If you've been following the twins since the beginning you will remember Lauren has ALWAYS had more problems with her lungs and Alex has ALWAYS has feeding intolerance issues.

You take the good, you take the bad...

The good...
Lauren had a great check up at vent clinic...She had a great lung x-ray and perfect blood work. They dropped her vent rate to 14 and next vent clinic (March 24) they will run a "trach trial" where she take her off the vent for 15 mins to see how she does. After that we can do this for 15 mins 2x a day...I'm SO excited! Lauren will get to go UPSTAIRS! Or maybe even outside without dragging the vent around. Then in April the time off the vent will increase to 2 hours! the doctor said she expects Lauren to be fully off the vent within the year!
The bad...
Alex has been getting worse again with drinking anything :( Today he drank a total of 3 oz but he eats fine...after much consideration and much struggle we've decided to go ahead with a g-tube. He have a pre0op on Tuesday. I'm been having bad anxiety about Alex going abck to the hospital for surgery. I knwo in the long run this is what is best for both me and Alex. I won't stress about him hitting his volumes everyday. But part of this does feel like failure to me. It feels like if I could have just figured somthing out then that sweet boy would not need surgery. In addition, Alex got a REALLY bad haircut today. I'm going back tomorrow to see if they can "fix it". The pic is before the bad haircut.

going private

Last call for email addresses...going private tomorrow! mkrothrn@yahoo.com if you'd like to follow! Even if you "follow" this blog you will not be able to once I go private!

twins together!

First blog video of the twins together! As soon as I take the camera out Alex does nothing but stare at me! Lauren, however, is laughing at one of her nurses! (i'm sure you can tell by now I haven't been back at work for quite awhile due to the amount of new things on this blog!)

videos

Just a couple videos by popular demand... Also a reminder that this blog goes "private" next weekend. I do need your email address to "invite" you if you'd like to continue to follow mkrothrn@yahoo.com Thanks!

Shout out.

I would like to take this opportunity to give a "shout out" to Lauren's fantastic nurses. Mary drove during the ice storm last night when her county had declared a "weather emergency". She was stopped by the police and asked where she was going. She came 2 hours early and worked a 12 hour shift to make sure I wasn't alone if the power were to go out. Carla is always my first call when I don't know something about the vent or what the next step is. She has saved me many a time from just going to the hospital. Marie works Lauren every day. I've seen dramatic improvement in Lauren since she has taken the case. She frequently stays an hour over her time to go home if Lauren needs extra help. This is not a job to these nurses. It is there mission. I get calls and texts though out the week. We all work together for the common goal of Lauren.
My mom requested more video of the twins. I took this one of Alex yesterday. I will post another of Lauren soon. The picture was taken this morning when I caught that Lauren actually got herself turned all the way over on her belly with her but up in the air! This was quite a feat considering how much tubing she has!

ICE storm 2011

We're in the lull of 2 winter storms BOTH with potential to knock out power...this is VERY scary to me. Here's the plan...we have a back up battery for lauren's vent. This will last 9 hours. This however, will not power all her other electronic equipment (ie pulse ox, neb, humidifier, feeding pump etc) Nor will it power our furnace. We do have a back up generator we borrowed from a neighbor (thanks Tom!) But this will not power our furnace either and we cannot build a fire (with 6 oxygen tanks in the house!!) So the plan... the power goes out and I switch Lauren to the back up battery (we should get another back up battery in today) then we would start the generator to run her other things once they run out of power. If more than 5 hours goes by without power we'd call the ambulance to get a ride to the hospital. We did fine though last nights ice storm but we've got another one coming! Pray for no power loss!
In a further note I am going to make this blog private. If you'd like to continue to follow then just send me your email address and how you know the twins and I'll add you to the list! My email is mkrothrn@yahoo.com We will go private in about 2 weeks!