Appointment Update

>> 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!



Maxton's Mommy March 5, 2009 at 7:37 PM  

:-) good to hear Kamryn is doing well. Thinking of you guys. Thanks for your prayers/comments for us.

Kenny and Jennifer Miller March 5, 2009 at 9:57 PM  

Glad to hear both girls are doing well! Praying for things to work out with the meeting on April 3rd.


Jaime's World March 6, 2009 at 8:14 AM  

An LHR of 1.9 is fantastic and something to celebrate! We're so happy that you've been getting such wonderful reports!
As for the surgeon, hmmm, Tom and I are learning that you have to have the utmost confidence in all members of your team. Get all of the info you can and go from there. You are your child's advocate! I hope you find the peace that you deserve in your decision.

Love and prayers,
Sheryl and Family

Tracy Meats March 6, 2009 at 11:18 AM  

I don't think you could have had a better doctor's appointment!! Everything sounds right on track and what great news concerning Kamryn and Brooke. That is wonderful that Stephanie's fluid levels are in the normal range too. I completely agree with Sheryl that you are your child's advocate and if you ever feel uneasy with decisions, ask questions until you get an answer. Will you be meeting with a neonatologist after the MRI? Sometimes results are not immediate for an MRI. You also have the right to request a different surgeon if you don't feel comfortable with the current one. Praying for your little girls and that they both will be strong and Kamryn will do amazing things. Prayers that your decision on where to have the girls will fall into place after you have had both appointments in Houston and Dallas. You will know when it is right, you will feel at peace with your decision.

Did you get the girls' nursery painted?

Take care and sending those little girls much love and prayers,
Tracy Meats - mom to Ian, born with a LCDH on 4/3/04

Fer March 6, 2009 at 11:36 AM  

I am sooooo happy the appt. went well :)

Craig and Kristi Kuehl March 6, 2009 at 1:13 PM  

You two must be over the moon!!! That has got to be some of the best news CDH parents can receive. The power of prayer...

Go with your gut on the delivery--it is such a difficult decision, but one you will not want to second guess later. I will continue to pray for the girls, and it sounds like Stephanie is doing AMAZING!!

Much love & support...

Anonymous March 8, 2009 at 12:56 PM  

So glad that the appointment went well and everything seems as good as it can be at the moment.... I hope that there will be more good news to follow! Hang in there and if you feel something is "off," then follow your gut! From my own experience, usually my gut is right (LOL, that sounded funny).


Mamie March 11, 2009 at 4:27 PM  

So happy to hear this news!

Continued prayers for you guys...


iceehot March 15, 2009 at 3:43 AM  

I'm so happy your appointment went well!! =)

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