Maternal Fetal Medicine Appointment

>> Thursday, March 26, 2009

We had our appointment today with Dr. Zaretsky and it went really well. I think we both would be losing our mind at this point without Dr. Z, Leah, and Sharon. Leah is so good to us when she is doing the sonogram and just has amazing patience with all the questions we ask her. After visiting Houston, we realize we are once again blessed with our local healthcare professionals.


The appointment was pretty uneventful (we like that!). The twins weigh 1.15 (Brooke) and 1.11 (Kamryn) which is actually on par with a singleton pregnancy. This correlation will likely diminish a bit once we get to 28 weeks and then we should see them fall off that curve a bit. Based on the measurements, there is a 14% gap between their growth which is totally normal and we are right on track.

Amniotic fluid is measuring around 6 to 7. I forget what the measurement is of 6 to 7, but we know it is within normal limits as long as it is below 8. Heartrates were 134 (Kamryn) and 138 (Brooke). We were a little concerned about the 134 with Kamryn, but soon found out that is within normal range so all is well there.

We talked with Dr. Z about liver position and if a % of liver being up would be a predictor of needing ECMO (Heart/Lung bypass machine) and mortality. My feeling is that it had too be and while Kamryn's liver is up, 15% didn't seem that much. We talked about a number of studies that have recently come out and one specifically that indicated a much better prognosis if less than 20% of the liver was in the chest cavity. Another study talked about a very promising predictor of outcome being Predicted Percentage of Lung Volume using MRI measurements. I think they are a fantastic resource for CDH families and will give them a framework to ask questions. One of the most frustrating aspects of this condition is the difficulty that the healthcare community has in predicting mortality and morbidity in these babies. For every article I find that talks about Lung to Head Ratio being a good predictor there is another article or study that shows it isn't in their pool of babies. As all of you can relate, when you or a family member finds out about a condition you just want to know what the outcome is or what to expect. In the beginning of this journey I would get so frustrated because I felt Doctor's weren't giving us the truth about the prognosis. After many months and a lot of research, we finally understand that they simply don't know and I can tell just how frustrated they are that there are no solid predictors. They honestly won't know until Kamryn is born. These newer studies I talked about show there may be some promising new indicators out there. I have posted the three studies at the top of the page under resources.

I think I am rambling again........sorry. Stephanie turned to me the other day and with all the confidence in the world said, "Kamryn is going to make it." I believe she will also and I can't wait to tell her somewhere down the road when she is older that she sure scared the heck out of mommy and daddy. We are looking forward to that day.

Friday April 3rd is our next big day when we get to meet with the Doctors at Children's here in Dallas. We are really looking forward to it and getting our plan together for delivery.

Thanks to all of you who give us support each day and keep us grounded. We would be lost without you all!

Shawn and Stephanie

P.S. Kamryn says "hi" to everyone in the picture below.




6 comments:

Marion March 27, 2009 at 8:27 AM  

I know exactly what youare going through. My daughter, Addison, was born with LCDH on 2/17/09. The doctors gave us a 60% chance of survial until she got here and it was much severe than anticiapted and we lost her on 3/11/09. On the other end of the spectrum, there was a baby in the ICN at the same time that was given a 30% survival rate and is going home soon with no lingering complications. It is all in God's hands. Just pray and stay strong and posive. If you need anything or would like to talk, my email is marionacord@hotmail.com

Tracy Meats March 27, 2009 at 10:53 AM  

How cute to see Kamryn waving hello! It sounds like a very good appointment and you are very blessed with kind and caring health providers. Many continued prayers for Brooke and Kamryn--Kamryn IS going to do amazing things!! Thanks for posting those studies, I will go read up. How are you feeling Stephanie? Prayers you continue to have a good pregnancy and things keep looking good. April 3rd is going to be a great day for you and I hope it is not a rushed day.

Hugs, Tracy - mom to Ian

Irvin family March 27, 2009 at 4:15 PM  

Stephanie, it is nice to meet you.
Oakley has been such a miracle to our family. We would be glad for you to e-mail us. Our e-mail address is irvinfamily5@windstream.net.
We will be praying for little Kamryn and for her to beat CDH.
God is so good and he has blessed us more than we will ever deserve with our Little Oakley.

With love,
The Irvin family

Anonymous March 27, 2009 at 5:13 PM  

Hi, this is Julie from dinner with Jenn a while back. I just wanted you to know that I think of you all often and think you guys are so positive. Stay warm this weekend and please call me with any questions you might have. Take care!
Julie Dudley

Sallie Mercer March 27, 2009 at 7:55 PM  

WOW!!! The detail on Kamryn's u/s is incredible! God Bless her and all of you as you continue on this journey. Just wanted you to know I'm thinking of you often, even if I don't always write. I can really relate to your frustration with the lack of concrete answers to your questions. I faced a lot of then when I was diagnosed with a chromosomal issue while ttc. It's one of those "in your face" reminders that there are some things that we just can't control, but they're in God's loving hands. Blessings and hugs to all of you! Love, Sallie

theparkerreesefoundation March 30, 2009 at 6:41 PM  

Your family is always in our thoughts and prayers. Please know that we are here for anything!!!

Jessica

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