Just Taking It Day by Day

Here is the first update that I sent everyone when we found out more about Carli. I am too lazy to type out a big long description.


Carli Update #1 (approx Jan. 26, 2007)
"There are many of you out there that I told we would update you when we found anything out regarding Carli's condition. I figured since there are so many that I am suppose to tell, so I decided to just make one message that I can share with everyone. We went to Topeka yesterday and spoke with the specialist. He said that Carli does have CDH, and that there is some of her stomach and some of her bowel in her chest cavity. I will not be delivering in Topeka either, since it is out of their scope. Sounds like it will be Kansas City, and I will deliver at either KU Med Center or St. Luke's, and then Carli will be transported to Children's Mercy Hospital. The specialist told us that Carli will more than likely have to be on ECMO, which is where they have her lay on her left side of her head, and insert 2 tubes into her neck that will help oxygenate her blood for her, so that her left lung can hopefully grow some while it rest. To be honest that was really the one thing that I was really hoping she wouldn't have to have. I guess there really isn’t too many places that do ECMO, and that children's mercy is one of the top 4! That makes me feel about this () much better. Carli will be intubated right after birth, which i am really sad about. I am having a really hard time with all of this info. There is so much that I need to get done, and I don’t know that I will get it all done before I have to go deliver her. Before this diagnosis, i was counting down the days...couldn’t wait for my c-section date. Now, I am finding that I don’t want each day to move, because that is when Carli is really going to have to start fighting. I will be honest with you all and tell you that I am terrified. I am going to try to be as optimistic as possible, but I know that I need to prepare myself for both scenarios. So far, Carli seems to be a stubborn little girl!! At our first ultrasound (u/s), she had her face facing inside my body, rather than out, so that they couldn’t get a good picture. Then yesterday, she was really comfortable with her arm right up above her face. And she wouldn’t move it!! They estimated her weighing in at 3 lbs 11 oz yesterday. She is doing really well with everything else!! Her heart rate was great...at 124bpm. They told us that they think she has hair!! I am suppose to go see my regular dr again next week, then go back to see the specialist in 4 weeks, which is when we are suppose to let him know where we would like to try to deliver her. We also have an appt on Feb.16th to meet the group of drs that will be working with Carli at Children’s Mercy. I have so much going thru my head right now. There is so much to worry about. I worry about my other kiddos. I know that I am going to want to be in KC as much as possible, but know that I can’t neglect them either. Then of course there is financially, and work. The list goes on and on!! This so was not the way it was all suppose to go!! We had everything planned down to when the c-section was going to happen. Well, I suppose I should end this for now. Please, if you believe in prayers, please say one or two for Carli and our family. If you don’t believe in prayers, will you at least keep us in your thoughts. I know we will need them all!!"