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CaseyFBarnhill

important question

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I'm at 27 weeks now , and Miami told me that I didn't have to see my specialist anymore, but to see my regular OB; however, my OB can not deliever in Miami, and has really had only 2 patients with CDH, which he's sent to specialist, so everytime I see him he really doesn't do much, he'll just ask questions about how everything is going , and he'll listen to the heart beat, and do all like the regular pregnancy tests like glucose testing and such... needless to say The Doc and I both thought that Miami would be more involved, but I have not been seen in OVER a month... so my question to you moms out there is how many times per month were you being seen at 27 weeks +? I've had my amnio, my echo, and my Mri... getting my glucose testing on the 10th but the next time miami would see me would be on the 16th of april to make sure i'm ready for the surgery... something doesn't make since... I feel like I should be seen at least 2/ 3 times a month I dont know maybe i'm just really anxious and concerned someone please help me out with this question!
- Casey
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  1. stephenlroberts's Avatar
    Hello, we are 27 weeks as well and also diagnosed with CDH. Our OB referred us to a perinatologist that monitors the baby every week. We found out the hospital that we were originally going to deliver at would not be able to handle our situation and had to find a new hospital with a level 4 NICU. Keep asking questions. Time is on your side as you were able to find out before delivery.
  2. MarieM's Avatar
    Hi, I was diagnosed in-utero and even so, I wasn't seen any more than a typical pregnancy and definitely not 2-3x per month. The main goal for my OB in my case was to carry as long as possible to full term and then we had a scheduled c-section (Probably because I already had one c-section and because of the CDH). I'm not sure the doctor would be able to tell you anymore if they saw you more frequently but don't hesitiate to ask why if you're doubting the frequency. It would be good for you to hear the rationale from the doctor himself/herself. By the way, I was at MassGeneral who had CDH specialists so it wasn't because they weren't experienced with CDH.
  3. Chris and TracyMeats's Avatar
    Casey, doctors vary all across the US on the frequency of how often you are seen. Most of the visits don't pick up until the third trimester and many doctors do the non stress tests every week on the baby and monitor your fluid levels in the third trimester. There really is not much more they can do but make sure the baby is not in any stress, a strong heart beat and your fluid levels are normal (by taking your measurements). Ask the specialists in Miami, if you will be seen more often, especially after the surgery takes place. You need doctors to be monitoring you and baby after the fetal surgery, for preterm labor risk is there and the baby cannot be delivered with the stent still in place. You should be seeing the doctors that place the stent and an OB after the surgery, I would think anyways.
  4. KristinaK's Avatar
    In Cincinnati, OH they have what they call the Fetal Care Center of Cincinnati. I went there often for NST's, ultrasounds, and I had two MRI's(through Children's Hospital). They kept me very informed each and every step of the way. I even got to tour the area of Children's Hospital where they would be taking my son immediately after birth. Cincinnati Children's has doctors who specialize in the care of CDH babies, and I know when my son was there 5 years ago, there was a 100% survival rate!
  5. CaseyFBarnhill's Avatar
    Thank you ladies!!! I scheduled to see my regular OB on Monday, and Gavin seems to be on track weighing 2.3 pounds, and having a great heart rate!!! not worried anymore because now i'll be seen on the 16th, which is a couple of days before surgery, If they don't see me more often after surgery there will be problems lol... but I definitely think they will... Thank you again for sharing