baby tricks!

There's no place like HOME

After almost a week in the hospital everyone is home and healthy. Alex is back on every 4 hours Albuterol. yes, waking up at midnight AND 4 am :( He still has a cough but his lungs sound much better. They kept him last night just to make sure his o2 sats didn't drop. (this is even though I BEGGED with my most convincing arguments that there was nothing they were doing there we couldn't do at home! After all, I'm running an ICU over here!) He is also on a steroid breathing treatment and antibiotics for the next 5 days. He's been tolerating his feeds for 3 days now after vomiting 2 days straight (weds and Thursday) He's 95% better. He was horrible to put to bed tonight. He usually just rolls over and goes to sleep. Tonight he needed me to rub his back for 15mins. Then when I left he would realize I was gone and FREAK out. I stayed at the hospital and slept next to his bed for 5 nights. Last night I thought he was down for the night so I left at 7pm...maybe I should have stayed one more night?
Lauren is great. OT saw her today and got her up on hands and knees with her head up for 30 whole seconds. This is HUGE. A month ago I though "just forget crawling, lets just walk" It seems some crawling may be in our future... I have now made it so anyone can comment. I love to hear how great the twins look...especially from those of you who knew them when they should have been fetuses. It's encouraging and helps me to continue the most important job of my life.

Crisis averted.

It was touch and go for a while with Alex. At one point, I had to hold the albuterol treatment over his face because he needed it continuously for 4 hours...form 2am to 6am. The he went to ever hour treatments and now if finally to every 4 hours and hopefully when he's home it will be every 6-12. Last night he only dropped his o2 sat a few times on 2L of o2...he does fine during the day. They want to keep Alex one more night and he should be fine. He's feeling MUCH better today..so just imagine keeping a toddler in a "crib" that looks like a jail for 3 days with him crawling up the side of it with10,000 monitors on.Boo. Can't wait to get him home tomorrow. Idid take a big step back with anxiety about him getting sick. No more library class. No more touching other children until at least May if not June. sigh.

Really? come on now!

Both the twins are now in the PICU. Right next door to each other. Alex is still struggling to breathe. He's on 40% o2 with 8L of vapotherm. Not much more room for him to get worse without getting on the vent. He did sleep much better last night. He didn't sleep at all on Weds night. He just thrashed around a cried ALL night. It was very sad.
Lauren is getting Albuterol every 2 hours and is much more comfortable than her brother. We hope she gets released here soon.

In the PICU...and it's not who you think.

Alex has pneumonia. boo. We had a horrible night last night that ended in the ER with respiratory distress at 5am. He's doing well now. He's on a bit of oxygen to keep his o2 sats up. They started antibiotics and steroids. Poor guy. I'm keeping a running tally of how many times I go to the ER with these kids. Alex just tied it up at 2. It seems he wants me to remember that he, too, is medically fragile. I hope for a return home tomorrow...it's like baby-jail in there. He clangs his "shaky" against the rails for attention :(
Lauren, on the other hand is doing well. Her weight is down to 21 pounds 11oz...this means they increased her calories by 15% and we're starting to run her feeds faster! Can't wait for trach trials tomorrow!
Just a cute pic of Lauren

"not your typical CP"

I was trying to get a good pic of the twins together... then I figured, just forget it...and posted some of the bloopers!
We went to the Jackson center today to see if Lauren would be a good fit for their program. SHe was evaluated by the lead person there who was from Hungry and had a very thick accent. "conductive learning" was brought over from Hungry so this woman was an expert and runs the center.
She evaluated Lauren and at one point said "this is not your typical CP". Huh? Her muscle tone isn't bad. The woman did notice her odd shaped head and how her body is MUCH bigger than her limbs. This woman should have seen her when she came home! Lauren sat and rolled for her. SHe tracked a shaking rattle to prove she could both see and hear. As it sits now, the woman did not want her in the class with the vent because it is a group class and the vent is too bulky. :( We're looking though at doing a month's session in June and go from there. The thought is that by June Lauren should be off the vent most, if not all, of the day. This woman "wouldn't promise us anything" but she thinks her rolling and using her hands should improve a lot. Great. I don't expect her to promise us she will walk but I just expect for everyone to be a bit more optomistic than I am!
There is a BIG week coming up for Lauren. We see her "developental pedicatric" doctor and we do trach trials at vent clinic!

Lauren sits pretty!

Lauren has had a much better week. She is finishing up the last few doses of her Tobramycin and sits up more and more every day! I went to The Jackson Center today to look into more therapy. The place was AMAZING. We go back in a week to get Lauren evaluated for the program to make sure she would benefit.
Alex has also had a good week. He saw his lung doctor and he said we could stop doing all his breathing treatments! Also, He is up to 21 pounds 5oz (a 2 pound gain since his G-tube??!) This means the twins are only a pound apart in weight! The gap is closing fast! The farthest apart they ever were in weight was this time last year when Lauren hit 16 pounds and Alex was 8pounds!
The video is just to show that Lauren is getting cuter everyday!

Home again!

Lauren is back from her 48 hours in the PICU and feeling much better. SHe has trachitis and is doing better on inhaled antibiotics. As luck would have it, one of her vent doctors was there today and he liked her x-ray so much we actually did a *vent wean* and brought her PEEP down to 5 (she came home on 8 and at one point last summer was all the way up to 15!)before she came home! Can't wait for trach trials!

Back in the P.I.C.U.

Lauren took a sudden turn for the worse yesterday. She was struggeling more to breathe and we maxed out all we can do at home without a cardiac monitor and we're currently back in the PICU. She has since gotten off continuous albuterol and is now every 2 hours. SHe has a TON of secretions from her trach which are all yellow. They have started he on steriods, inhailed antibiotics. SHe has so far tested negative for everything: RSV,FLU, blood cx normal and CBC WNL. We're hoping to bring her home tomorrow. She really don't feel well. Cries often. It's very sad. ABout every half hour I ask "so why arn't we starting her on oral antibiotics..."maybe I'll get a point across at some point! I've had a tiring 2 weeks. With Alex needing fed around the clock and then his new "i'm going to wake up at 530 am". I'm a bit out of sorts. Hopefully everything will calm down. Her vent doctor is in house tomorrow so I'm hopeful to get SOMEONE in there who knows her! Sometimes I forget she's so medically fragile. I suppose I have to be reminded every few months...

Future so bright...gotta wear shades!

Alex had a weight check at the dr's office... 20 pounds 4oz...gained almost a POUND since his g-tube! his site looked great and they took the remaining stitch out..(with much difficulty I'd like to add :( )