Tuesday, November 16, 2010

Children's appointment postponed

Our appointment with Children's is postponed until the 29th. It will once again be with Dr. Hackam instead of the doctor who is new to Pittsburgh. We're awaiting their answer as to whether I should have an amnio done as well as a fetal MRI. I had previously declined the amnio due to the risk involved, and because it wouldn't have affected our decision, but my OB feels it might be beneficial for the surgeons. 

Our appointment with West Penn will remain on Thursday. It is common with CDH babies to have excess fluid...hoping my amniotic fluid level is still within normal range. When it's too high, there is a risk of preterm labor. 


  1. I am sorry for the postponement! I know for me, waiting to find out answers was the hardest part! I wasn't diagnosed until 29 weeks, but just to let you know that my surgeon, Dr. Kays or my OB, did not require me to get an amnio or a fetal MRI. He said a good, indepth level II ultrasound performed by someone who knew what they were looking for was just as good as an MRI in his opinion. And there were no other apparent risk factors that pointed to another abnormality other than CDH and I was already at 31 weeks by the time I got the diagnosis confirmed, so we didn't see the need to do an amniocentisis. I hope you have good upcoming appointments with good news! Still Rooting for Ramsey!!!!
    Mom to Dakota 12-25-2008
    R-CDH survivor

  2. Waiting is the hardest part at this point! But you will learn that patience is key! When we were diagnosed at 18 weeks they also found a cyst on Charlie's brain which can be an indicator for other problems. The geneticist/fetal specialist we worked with wanted us to have an amnio to rule out additional abnormalities, but we also declined because it would not have changed our decision of what to do. And our surgeon agreed that it did not effect his approach either. We did have an MRI though. (And for the record, there were no additional problems present once he was born!) Hope you can find some peace while waiting for your next round of appointments.

    Much love and prayers,
    Patty D'Angelo
    mom to Charlie, 2-4-09
    LCDH survivor

  3. We also chose not to do an amnio because it would not have changed our decision or the prenatal care. It just wasn't worth the risk in our opinion. I just read your post about th LHR. Try not to stress about it. My daughter's LHR was very good and they almost lost her. The CDH baby in the room next door needed the exexit to ecmo procedure because they saw only a tiny amount of lung. They both are survivors and spent equal amounts of time in the ICU.

    Good luck and stay positive!
    ~Tiffanie (mom to Syren, LCDH survivor, 1-10-08)

  4. I agree with both of you about the amnio...I'm not sure why but the surgeons and the OB think it will be beneficial to the baby, so I feel have to trust their opinion.