>> Thursday, March 5, 2009
We had a terrific appointment today and it was full of good news! Both Kamryn and Brooke are measuring great and are actually the size they should be if this was a singleton pregnancy. We are at 22 weeks 1 day and they are right on target for growth. Amniotic fluid levels were completely within range which is important so that Stef doesn't go into labor early.
It still looks like the liver is not involved and it's just the stomach and intestines that have herniated into the chest. We could see the diaphragm so we are certain that there is at least some present. This will make fixing the hernia easier and we hope there is sufficient diaphragm there to close the hole without having to use a patch. Based on everything I have read, using the patch works but there is an increased chance that it will re-herniate afterwards which requires another surgery to repair.
The most exciting news was the Lung Head Ratio (LHR). Kamryn measured 1.9 today. This has increased from the first measurement taken on Feb 12th which was 1.3. This is just one of the many indicators of prognosis and there is plenty of debate about how much you should rely on this number. With CDH, a LHR under 1.0 is considered severe, 1.0 - 1.4 is considered moderate, and over 1.4 is considered good. We think a 1.9 is fantastic!!
We head to Houston Children's for tests and consults on March 20th and then to Dallas Children's on April 3rd. We should know a lot more after these visits.
With all this great news came frustration later in the day. We found out the name of the pediatric surgeon we will meet with on April 3rd in Dallas. We also got our schedule which shows us meeting with this surgeon before we have our MRI test done. I immediately started my research on this doctor and wasn't very comfortable with what I found. I then emailed our high risk OB about my concerns and the fact that I wasn't sure how the surgeon could do a comprehensive and accurate consultation without having the MRI results. Just didn't pass the smell test for me. The response I got back was that I should reach out to the chief doctor at Children's about my concerns/questions and that we will have a group discussion after April 3rd about the gameplan for care. We will see how that goes and where we go from there. Not having that comfort level just frustrates me.
That's where we stand at this point and things are still looking as good as we could hope given the situation. Thanks to all of you for continuing the pray for our little girl!