Another hurdle cleared!!

>> Thursday, February 12, 2009

What an afternoon! We had a couple of appointments today and received good news all around. I want to start off and tell everyone that Brooke's exam was boring (we love boring) as everything looks fantastic. With everything going on with Kamryn, I sometimes forget to count our blessings with a child who is completely healthy. Brooke is doing fantastic!

Ok, so our afternoon started with Dr. Zaretsky (hi-risk OB) for a sono and amnio. The sono went well and he still can't see that the liver is up. Again, hard to confirm with the sono, but it isn't jumping off the screen that it is there so that's great news. The MRI on April 3rd will give us a definitive answer. The right lung looked good and is growing well. There isn't a lot of left lung right now which is not good, but not unexpected. He did some quick calculations on the Lung to Head Ration (LHR) and came up with 1.3. From what we understand (if any CDH parents want to weigh in on this please do), this number could get better with time. LHR of 1.4 or greater typically indicates a very favorable prognosis while an LHR of less than 1.0 presents substantial challenges for survival. We will know a more firm number when we have the MRI, but we will take the preliminary 1.3 for right now. This was definitely good news.

The research is somewhat mixed about how useful indicators are for prognosis in CDH babies, but the two things we are tracking and will keep you up to date on are 1) LHR (>1.4 is great) and 2) Liver down. We are doing ok on both indicators right now.

Here's what we know: Stomach and intestines are in the chest cavity on the left side for certain. Heart is pushed to the right (expected), but not compressed (good). No indication of liver up (very good - one of the biggest predictors of survival). LHR of 1.3 (good preliminary number).

Next, Stef had the amnio. I have given her so many shots over the years for infertility that I was happy it wasn't me doing it one more time. I was surprised that the needle was as big as it was (22 gauge - same size we used to inject progesterone into her hip). She was such a trooper as usual. It was uncomfortable, but you wouldn't have known by her reaction. We were blown away at what happened next. Just before he was ready to insert the needle into Kamryn's sac, Brooke's foot came flying over right where the needle was going to go. I swear, she was protecting her sister. You could tell that their sisterly bond already exists. We all just kind of stepped back and thought that was really special. We got the fluid drawn and sent off to the lab. We will know the preliminary results (Down's, Trisomy, etc) this Monday. We get the final results 10 days from now. If we get good results on Monday, it is incredibly unlikely that any problems would come back on that 10 day test.

Next up was the Cardiologist. Dr. Day was incredible and is a Texas Tech fan. That's all we needed to know to be comfortable with him. Seriously, he was incredible and just a really good guy. The sono on their hearts took about an hour total. If movement in the womb is any long term indicator of health, these babies are going to be just fine. Both doctors kept commenting on just how much they flip around. Both hearts look really good and there were no defects that he could see. He wants to see us back in 5 weeks just to make sure, but everything looked great. This was a huge hurdle because CDH babies have such a hard time with their lungs that it would be compounded greatly with a heart defect and survival deteriorates substantially if problems in both are present. We posted the new ultrasound pictures in the slideshow at the top right and they were able to take a couple 4D shots.

We were blessed with a terrific day today and we were able to gain even more hope that Kamryn will beat this condition. Thank you so much for your continued thoughts and prayers. The comments and emails we receive from you all keep us going and we can't thank you enough for the support. Each one of you is appreciated more than you will ever know.

Shawn

12 comments:

Kenny and Jennifer Miller February 12, 2009 at 8:21 PM  

Great news! I'm so glad the appointment went well and you got some good information that helps to reassure you (it's sometimes hard to come by with the wait-and-see situation that is CDH). Any good news you can get helps so much! That's so cute how Brooke was protecting her sister! Twins have such a special bond.

Jen

Jaime's World February 12, 2009 at 8:42 PM  

Congrats on a positive day! Sounds like Kamryn is truly going to make it...based on the liver being down, the right lung growing and the high LHR. That is FABULOUS news! I'm so happy for you guys! You all must be walking on cloud nine!
You are so blessed!
Wishing you continued good news at each of your appointments! :-)
Hugs and prayers,
Sheryl

Courtney February 12, 2009 at 8:58 PM  

It sounds like it was a GREAT day for Brooke and Kamyrn! Wow-isn't their bond amazing?? I am so happy to hear of these results and will keep praying! Love, Courtney

AliciaB February 13, 2009 at 7:13 AM  

What fantastic news! Such a blessing! Love the story of Brooke protecting Kamryn! How precious is that!
Thank you again for allowing us to walk this journey with you.

God Bless!
Alicia

Anonymous February 13, 2009 at 9:02 AM  

what great news you guys got today! many prayers for all of you guys!

Maxton's Mommy February 13, 2009 at 10:19 AM  

S oglad to hear you got some good news. I know how overwhelming all the doctor appointments can be and it sure helps to hear something good when you go! Praying for you guys and hoping for good amnio results on Monday.

Tracy Meats February 13, 2009 at 11:30 AM  

Wonderful news to hear Brooke is doing great and you received positive news regarding Kamryn!! Many prayers the amnio tests come back fine. You are right the LHR can change has the baby grows and we want to see it increase with Kamryn. It is so hard to predict what a CDH baby will do once they are born. Sometimes these predicters that doctors watch are just a guess, for there are tons of CDH survivors who had a very low LHR and liver up. My best advice is stay positive and strong for Kamryn and believe in miracles. Brooke and Kamryn are going to amaze you with their strength and they have so many praying for them.

Happy Valentine's Day!! Many prayers for your entire family!

Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

Craig and Kristi Kuehl February 13, 2009 at 11:50 AM  

FANTASTIC news!! You guys take those numbers and run with it!! Prayers are working...

Fer February 13, 2009 at 1:10 PM  

Great news!!!!! I'm so happy the appt. went well :)

Jenn M February 13, 2009 at 5:58 PM  

So glad it went well!! Looking forward to Sunday, see you then!

Lotusflower February 15, 2009 at 12:38 PM  

Hey Stephanie,
I just read your latest update..... I am glad that the amnio went welll and I LOVE how protective Brooke is of Kamryn (those Brookes are tough cookies ;) ). I hope that results on Monday will be good too, and if that is good likely there are no chromosomal issues, which is one less thing to worry about. I was also glad to read that the LHR ratio is in a good range/liver is down and the echo went well. I sure do hope that things will improve or at the very least stay as stable as possible. Was there any mention of when they hope to deliver the babies? Hang in there!

Lotus

Geez, finally figured out how to post here (rolling eyes).

Shawn February 15, 2009 at 3:02 PM  

We asked when they wanted us to deliver and they would like to see us get to 37 weeks. The OB felt like we really needed to make it to at least 34 weeks, but they are hoping for 37. This waiting game for the amnio results is killing us. Tomorrow is almost here!
Shawn

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