Tuesday, February 17, 2009

Very Busy Day at CAM and Children's

We had so many appointments and meetings today. It was all very overwhelming. We met a lot of new people and got a lot of new information. I felt fine all day, but when I got home, I was exhausted. Here is a recap of the appointments.

OB
We had our OB appointment first. She just wanted to check up on everything and see how I was doing. It was a normal, routine appointment. She said that my c-section would be scheduled for March 31st. I just have to wait and hear back for a time.

Fetal Echo
After the OB appointment, we went over to Children's for a fetal echo. This time I met a new pediatric cardiologist. Its amazing to see how different doctors can have such different takes on the same thing. This time, Cora cooperated more than ever. I think its because she has less room to move around. The other times, the ultrasound tech had to chase her around and hope that she stayed still for a min. They were able to get a good look at the sinusoids for the first time. They always knew they were there, but it was hard to see them. The cardiologist explained everything so well and it was great to hear all of that. He explained more about the sinusoids, how they developed, and why they cause problems with the surgeries. He also explained how all of the surgeries worked. I didn't really understand this before. I never knew that the right side will be pumping to the body instead of the lungs. The blood that needs to go to the lungs will bypass the heart and go straight to the lungs. Its all pretty amazing to me. We still won't know if we can have the surgeries or a transplant until they do a cath and put dye in her heart to see exactly what is going on.

CICU Tour
After taking a break for lunch, we went up to CICU to see if Wendi could give us a tour. She was someone that my mom recommended to us. She was so nice and answered all of our questions. It was nice to see where Cora would be spending most of her time. We walked in, just wanting to take a look around and ending up asking a ton of questions. We found out that most of the shirts that I got for Cora won't work until we get her home. I don't know why I stress about the little details! I guess I have to go shopping for a few more things. She can't really have things that go over her head. Its hard to get them on. Wendi was really nice and patient with the two of us. I'm really glad that we did this tour. Knowing more made us feel a lot better. After the tour, we went down to visit with Mom and give her an update. She was working today, but was kinda busy.

C/T Surgeon
After talking with mom and checking out the Ronald McDonald room, we met with Dr. Gandhi, one of the cardio/thoracic surgeons. There are only two doctors at Children's that do the surgeries and he is one of them. He explained more about the surgeries and told us why Cora's condition is more complicated. HLHS is the most complicated congenital heart defect and Cora has problems with the mitral and aortic valves which make it possibly the worst kind of HLHS to deal with. This is why she might need a transplant. He also told us that there were 20 HLHS babies in the hospital last year. Of the 20, they only lost one. He also said that there were good and bad things about both a transplant and the surgeries. That made me feel a lot better. I had been thinking that a transplant would be a bad option, but the babies have about the same survival rates. Also, there is an average wait of only about 6 weeks for an infant heart because they ignore blood type and they only use the hearts in extreme cases. They are doing more surgeries now and are not needing as many hearts as they had in the past. I was glad to hear that because I had worried about Cora waiting a really long time for a heart. We were VERY impressed with Dr. Gandhi. He was so nice. We would really love for him to do the surgeries on Cora. I'm sure the other doctor is great too, we just haven't met him yet.

At the end of the day, we left the hospital feeling much better than we had in the past. We got so much information, but I was glad to get it. The doctors were very patient with us and explained everything. I'm the type of person who needs to have all of the facts on everything and it was really nice to finally get some straight answers rather than generalizations. This was the busiest day we've ever had at CAM/Children's, and I don't think we'll have another one like this until Cora is born. We have one more ultrasound, one echo, and 4 more OB appointments. These will probably all be routine, just checking up on things. I'll still try to keep everyone updated on things.

5 comments:

Jill Dupy said...

Thank you so much for keeping us updated. Please, please let us know if there is anything we can do. We are all praying for you, Erik, Gabe & Baby Cora. Jada prays for "baby Cora" every night. We love you guys!

Anonymous said...

thank you so much for the update. Wish I was there to help.-Teresa

Anonymous said...

Thanks, Jenn, for the update. It's comforting to know that you are in such good hands. We can't wait to see that darling little girl. We think about you guys every day and our thoughts and prays are always with you. Love, Grandma and Grandpa Dahlgren.

Anonymous said...

Jenn, glad to hear all the updates. Stay strong, it sounds like Children's will do a great job caring for Cora. Our thoughts are with you. Jon & Cindy Clark

Anonymous said...

Jenn -

So glad to read the update. I was thinking about you guys this week, I remembered you said you had an appointment around Presidents Day. Dr Gandhi is a REALLY nice guy - Ive never met him personally, but, when I worked for the docs exchange in STL, he was on our service and he was one of the most pleasant docs to talk to - never mean or rude to the exchange - which is a sign of a caring doc. The ones that are jerks were always buttheads when they called us back, lol.

Anyway, so glad you are feeling more confident about the situation. Cora will come thru will flying colors, no matter which treatment route is taken. I think she's a strong litle girl, and sounds as though she is wonderful hands.

Hugs,
Macie (and fam)