Conclusive MRI Results

>> Thursday, May 21, 2009

First, we were completely surprised today to get a wonderful gift from Ashley (Maxton's Mom). Ashley, you are so creative and to think about us with this gift was incredible. Thank you so much for this special gift and for also thinking about Hollie! Here is a picture:

It's been a long day, but overall we feel a good day. We didn't learn anything surprising and we are just fine with that. We hit the road about 9:00 and had barely made it out of the neighborhood when we got the call about the MRI machine not working. We don't have a lot of luck with these machines since the one in Houston went down when we were scheduled also. We got called back about 11:30 and the actual test took about an hour. Stef was so uncomfortable throughout the entire experience, but she stayed strong and made it through the procedure.

Dr. Twickler met with us a shortly after to discuss what she found. I have to say she is the nicest lady and just incredibly thorough. She really is an authority on fetal imaging and I feel lucky that we are close enough to have been able to get her opinion. She was just terrific to work with. She was able to get fantastic, noise free images that I believe were much easier to read than what we had in Houston. The first item up for discussion was the liver position. Our gut was right, it is "up" (in the chest - not where it is supposed to be). The good thing is there is only 2.8% of the liver up and she really had to search for it. It's barely remarkable and much lower than 20% which is one of the predictors for ECMO and mortality (less than 20% is good). Finally have that mystery solved!

Another measurement of conflicting importance is Total Fetal Lung Volume and then the Observed to Expected Total Fetal Lung Volume %. Our situation with twins presents a somewhat unique situation because we are able to see what Kamryn's lungs measure and then compare them directly with where they should be by measuring Brooke's. The total volume of both Kamryn's lungs is 20cc's while Brooke's total lung volume is 81cc's. Brooke is a week ahead of Kamryn, so if you back that up a week, Kamryn should have 80cc's if all where normal. Basically, Kamryn has 25% of the lung volume that Brooke has. That's not so good since some of the studies have suggested lower survival rates with that low of a %.

At the same time, Dr. Twickler measured Kamryn's LHR (lung to head ratio) and the result was 3.3 which is extremely close to what Dr. Zaretsky has found between 3.0 - 3.4. Anything higher than 1.4 is considered good. We are in fantastic shape with LHR.

*** I go into detail about how these are calculated in my document in the upper left hand corner of the blog so I will spare everyone the details.

Total Fetal Lung Volume measures the volume or space of the lungs while LHR measures the area in just a single plane. They are measuring the lungs in two totally different ways and we are basically getting conflicting results. Dr. Twickler didn't put nearly as much weight on the measurements as she did on the liver position and we are in good shape there.

The bottom line is none of this tells us how much hypertension will be present in her lungs and ultimately how this will all play out. Stef asked afterwards what my gut was telling me and I do believe Kamryn situation is going to be a challenge to get through with many ups and downs, but I believe we have a "good" scenario and she is going to survive. Kamryn has one heck of a fight ahead of her, but she can win this. Here is one of the images of Kamryn.

Overall, today was a good day and I know Stef and I are both ready. As ready as we will ever be I suppose. Thanks for all the continued support - we honestly can't thank you all enough!

Shawn

p.s. - Scott, I do NOT watch American Idol like your comment suggests :)

9 comments:

Tracy Meats May 21, 2009 at 8:03 PM  

I kept checking back for an update today! Try not to focus to much on the numbers and stay positive and strong your little girl will survive. Hoping when Kamryn has her surgery, her lungs will expand and she does very well!! By no means will this be an easy journey, but she has a wonderful family by her side and she will draw from that strength. Thanks for sharing the MRI image, technology is amazing. Many prayers for the entire family and especially Kamryn. Fight Kamryn Fight!!!

Thinking of you, Tracy

Maxton's Mommy May 21, 2009 at 9:48 PM  

:-) MY gut is telling me that Kamryn will have one heck of a fight that will end with her going home with her sister! Not that you asked, but I had to share. I never really had a "good" feeling about Maxton. I tried my best to remain positive, but deep down I think God was trying to prepare me. I get a good feeling when I think of Kamryn. I know she is not mine, but thought I would share nevertheless. Glad you guys liked the painting. It was my way of saying thank you to you both for being so wonderful to me. Can't wait to meet little Kamryn and Brooke, although I don't want them making any dramatic too early entrances :-)
Ash

Scott Nelson May 22, 2009 at 7:16 AM  

Shawn I apologize I know you don't or didn't watch Idol, but I didn't want everyone to know that you really love Dancing with the Stars!!

Stephanie May 22, 2009 at 8:11 AM  

Scott - You know my husband all too well!!!! LOL!

Liz and Shane May 22, 2009 at 11:17 PM  

Your MRI images look great! I didnt have that, that looks awesome! Great news about Kamryn's LHR. Remain positve and stay strong. It must be an amazing feeling to have twins inside. How wonderful! Keep up the pep talks. Kamryn is listening.

Rachel May 26, 2009 at 12:35 PM  

I too, have a great feeling about Kamryn! I feel with all my heart that she is going to be a true fighter and get through this with flying colors.

I am praying with all that I am for this to be a good outcome and for Kamryn to hurry home to her sisters!

You are all, forever, in my thoughts and prayers.

I am getting so excited to see pictures of the babies when they are born.

Rachel

PS....I LOVE AMERICAN IDOL.

The Adler's May 26, 2009 at 8:50 PM  

Shawn,

You sound so much like I was. For most of Carrie's pregnancy with Carter after we found out about his CDH, I poured over as much info and research as I could...including the same medical journals I see you posted. Every appointment with the specialists, I analyzed each ratio, number, statistic, etc... All this kept me sane from the "unknown" by giving me some data I could correlate Carter's condition to for a prognosis (whether good or bad).

I would also say however that much of this got thrown out the window when he was born and you focus on everything one hour, one day at a time. Carter has been with us 30 days and we are so proud each day he fights...his strength amazes us and I know Kamryn will be the exact same!

We'll be following along.

Jeremy Adler (Carter's Dad)
http://www.carepages.com/carepages/Adler

Ailsha May 26, 2009 at 8:59 PM  

So glad to hear things are staying positive. You all are in my prayers. Stay well and rested!

Ailsha

Chanda D Brady May 27, 2009 at 9:31 AM  

It really sounds like you guys are going to have some little babies at your home before you know it. I enjoy keeping up with your blog and am continuing to pray for you guys! Take care of yourself! Chanda

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