Update on Baby Emma

Please read the latest update about Baby Emma and praise God with us for the little accomplishments and for his hand at work in her life.

"Another busy week. They all just seem to run together now. Caleb and I spent Wed up in Milwaukee as we finally got his echo and check up done. He's been scheduled for the same time as Emma's cath and surgery dates so I kept rescheduling. Overall things looked the same for him as in August so no complaints there. He doesn't have to go back for 4 months - seems like forever when you're used to every few weeks or couple of months.

Emma has had a pretty good week. She's continuing to progress with things. We started feeds with her again and are increasing very slowly. We began with 10-15cc per day and have increased by 5 a day so she is now getting about an ounce every three hours and she is tolerating it so far. Not sure how far she'll be able to increase to since as one Dr. put it today her stomach is taken up by half of her liver. Her liver is very enlarged as it always is due to her heart failure. While she is getting feeds regularly she is not taking really anything orally. She showed interest on Wednesday, but needs to relearn how to compensate when swallowing due to her damaged vocal chords.

The persistent fever appears to have finally gone away as she's been without fever for 2 days now. Many of her antibiotics will be stopped tomorrow so her med list will shorten significantly. She is still on her meds to help her heart and to keep fluid off. They've been working to wean her methadone daily and she's still on that and valium to continue controlling her withdrawl from the pain and sedation meds.

This weekend Emma was able to get back on regular oxygen instead of the high flow and was weaned down to a half liter which is what she's been on since her Glenn. She still drops her oxygen levels lower than desired if the canula doesn't stay in or near her nose so she's not to a point where she can do without it yet. Since it really doesn't bother her there probably isn't going to be any big push to get her off it.

Overall Emma is just a happy go lucky kid again waiting for that new heart to arrive. We had a good weekend visiting her. She loves to have company and know there are people around. She's been giving smiles pretty freely again and even laughing at times.

Tomorrow will be 12 weeks since Emma went into the hospital this trip. I've had a few people ask if and/or when I'm going back to work and if Chris has been working. I went back to work Aug 1 and have taken about 6 days of vacation since then. Chris has taken a couple weeks off when Emma has had surgery, but otherwise we work full time and the boys are in daycare full time. To give you an idea, here's our typical week:

Monday/Tuesday: Work then Chris and I take turns either going to visit Emma or staying home with the boys
Wednesday: Work and then have a night together at home
Thursday: Work and all go to see Emma
Friday: Work then usually head to Milwaukee for the weekend
Saturday: Spend the day at the hospital or home depending on what we have going on; Football games at Purdue for Chris
Sunday: Hospital until late afternoon and stop for dinner in Kenosha.

It's about 90 min to the hospital from work and an hour from home so we spend a lot of time on the road. Some days more on the road than actual time with Emma, but we're thankful we are able to see her most every day and that our Moms are willing to live in Milwaukee when we can't. I'm anxiously awaiting the day when we can just come home every day and once again worry about what we're going to fix instead of where we're going to pick up food and actually being able to spend time at home in the evening instead of 2 hours on the road. In the meantime though we can tell you every exit between the state line and Milwaukee that has a McDonald's and the cheapest BP gas :) "