Two weeks at home

Things have been going pretty well for our little Sarah. She is now over 9 Pounds. She sleeps, eats, Poops, Cries and sleeps, just like a baby.
We have been having some issues with her enzyme intake. She has been taking very small quantities to help her digest food. Every time we increase the enzymes, she starts throwing up. The enzymes she is taking are made of pig intestines. I am hoping that we can switch her to Ultrace, which is a synthetic enzyme, and maybe will be better tolerated.
Will takes Ultrace and has never had any problems.
We took Sarah to Galena this weekend. She did great, although I think the ride was a little long. So, on the way home, we stopped off in Rockford for dinner.
Things are good. This week is a different doctor every day, but so far, so good.

Sarah @ Home

Sarah has been home for a week now. I have been waiting to get some good pictures to post, but with all the buzz around, we haven't had too many opportunities. The kid eats around the clock!!

She has had a few "Issues" with tolerating her enzymes. The nutritionist gave us instructions to increase the levels of enzymes (almost doubling) from the previous level. We drop some granuals into applesauce and feed her before she gets her bottle.

She did fine with 4 "beads", but threw up EVERYTHING when we went to 8. Then, she didn't like 4! We have since gone back to ground zero and started more gradually giving her the enzymes.

Christina was very upset as throwing up is a sign of another bowel obstruction and that can be bad. So, I will continue to monitor that process. She has been gaining weight and the doctors are pleased.

Sarah has had a number of appointments with the doctors this week and has had to get 4 shots. This also could be affecting her enzyme tolerance, so we will see.

I saw that the Nobel Peace Prize for Medicine went to some folks working on genetically altering mice to exhibit human diseases. In all the articles, they mention CF being the main disease. I found out that the CF Foundation funded one of these doctors efforts. So, thanks to all of you who have given to the foundation over the years and come out to our events. YOU funded Nobel Peace Prize winning research and you should be proud of that!!!!!!!

Sarah is Coming Home Today

Sorry for the delay in updates. We have been really busy with the charity event and getting Sarah ready to come home.

She has been doing really well. Her wounds have healed and she is gaining weight and getting stronger.

There have been a couple of delays in her departure. The doctors have been monitoring her growth and playing with her nutrional cocktail. So now, just shy of two month, she is 8lbs. 8oz, healed, growing and pooping the right color. Good to go.

We have encountered a number of new friends in the NICU. Nurses, doctors and other parents all with their own stories and problems. Our stay was longer than most, but not nearly as long as others. I feel great that we are going home and feel for those not going home.

So, in a few minutes, Christina and I will go and bring Sarah home. I have NO idea where we will put her!!