Establishing our new "NORMAL"

We are home and slowing reemerging into the real world.  Mom and Klara didn't leave the house for the first 10 days after Klara came home.  Finally, Emily decided she had enough and took a trip to Target with Lily and Klara - Just the 3 of them.  She packed up all of Klara's equipment and loaded the kids into the car and off she went.  If you can imagine - Emily pushing Klara's stroller with one hand, holding Lily in the other arm and holding a target basket.  All for the price of sanity.  It was worth it. 
We have been home for a little over 2 weeks and everyone is doing great.  Klara is continueing to gain weight -she weighs in at approximately 8 pounds.  We find out exactly how much tomorrow.  She is finally getting too big for her newborn clothes.  She is smiling and cooing, kicking her legs, and rolling to her sides.  We are still trying to get her to lift her head up off of the floor when she is on her tummy - but she prefers to scream.  She isn't a fan of tummy time. 
We had a follow up at CHOP and her docs were very happy with how her lungs sound and how much weight she had gained.  She recovered very well from the rhinovirus and pneumonia.  We have our next appt mid July and they will evaluate her and plan her next admission for NG trials. 
We are still waiting for results from the most recent tests being done by her neurologist.  We should hopefully hear something in the next 2 weeks. 
Lily loves having her baby sister home.  She loves to sing her songs and read her stories.  Life is finally becoming normal.

Home Sweet Home....Again!

So, after a 16 day admission, our sweet Klara is finally home...again. 
Klara did a great job with the rhinovirus/pneumonia.  The docs kept expecting her to get worse but our little fighter proved them wrong.  After a week at the NICU, the docs felt that she should transition to ICS (integrated care services - its like inpatient hospital for babies/kids) and trial food in her stomach again.  Klara couldn't decide if she liked it or not and eventually decided it was overrated.  So the docs pushed her tube back into her duodenum (middle chamber of stomach) and sent her home.

so as of 8:07 PM Klara was ours again. Discharing was a fiasco since we found out today at noon she was discharging tonight.  So we had minimal time to prepare.  Remember, Klara comes with parafanalia.  Feeding pump, apnea monitor, and suction machine.  So upon arrival to pick her up, we realized we forgot feeding pump stuff, and electrodes for the monitor.  so we had my brother bring up the stuff we forgot..once we had it, the monitor wasnt working right....Talk about stress. 

Anyhow, a long story short, Klara is sleeping in her bed right now (11:33pm) and IM DRINKING after that STRESSFULL discharge.

Lets hope things go back to the way they were, and if your sick, DO NOT COME OVER.  The Dr.s tell us the virus season is almost over...and there was  a big influx of severe Rhinovirus outbreak this year.  they saw a lot of babies alot stronger than Klara, do a lot worse...so i guess that was good news. 

After this small bump in the road, we have been talking to her neruologist about the primary diagnosis.  The last thing he tested for was negative..but we are on another track right now...and the test will take about 4 weeks for part 1 of a 2 part test.  So...once again we wait.