What more could we ask for?

Than to have an appointment like we had today! It was nothing short of outstanding! We saw Dr. Zaretsky, our Maternal Fetal Medicine doctor and both twins are doing exceptionally well for 31 weeks. Brooke is over 4 pounds now which is actually further along than she should be at 31 weeks. Kamryn is right on target for a singleton pregnancy weighing 3.13 pounds. We were scared that Kamryn would start to drop off a bit due to being a twin, but she's holding her own.

We were concerned about the amniotic fluid level around Kamryn and it did come back higher than we wanted at a little over 9 cm's. Normal range is between 2-8 and she has always been closer to the 8 cm mark than the 2 cm mark, but she went over at this visit. Basically, because of the CDH situation, Kamryn isn't able to cycle the fluid as well as Brooke through swallowing and respiration. I know Kamryn is trying her hardest to do her part, but her little organs are just not in the right place. Fortunately, the elevated fluid level is somewhat to be expected and it isn't a cause for immediate concern. If it continues to increase, it could potentially be an issue that we will need to address, but right now it is fine.

Then it was time for THE measurement.......... Lung to Head Ratio (LHR - we would like this to be above 1.4 as it can indicate a better prognosis). For all of you CDH families out there, hold on tight because you won't believe this. Lung area was 8cm and head circumference was 26cm. Divide those numbers and you get an LHR of 3. I know, I almost fell out of my chair also. I think Dr. Zaretsky did also and he indicated she really does have a lot of lung tissue on the right side that you can clearly see on the sonogram. We re-measured and made sure we could clearly see all four chambers of the heart (standard and accurate LHR measurement has to be taken when you can see all four chambers of the heart on the screen). Just because the right lung is large doesn't mean there won't be severe pulmonary hypertension or tell us how many alveoli are present, but larger size does help. We were still unable to see any liver above the diaphragm which is terrific news. We were thrilled and CAUTIOUSLY optimistic. We have another MRI in two weeks and I think we will have definitive measurements at that point.

And then, Dr. Zaretsky needed to talk with us about something in June...... I could tell where he was going before he even said it. Vacation! Our MFM is going on vacation in June when we are 36 weeks. I really did almost fall out of my chair with this news. It's hard to put into words what he has meant to us through this journey and I can't imagine him not being in the room to bring these two little girls into the world. He is a doctor like no other and we sincerely believe he is a true blessing in our lives. At the same time, we are thrilled that he gets to take a much deserved vacation and this will prove to be an incentive to make it to 37 weeks when he gets back!

It's been a great day for our family and we continue to appreciate the thoughts and prayers everyone is sending our way! It's working!

Shawn

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Maternal Fetal Medicine Appointment

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.

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Amnio Results

We got a call today about the amnio results and everything came back negative for chromosomal disorders. This confirms that Kamryn does not have Down's or Trisomy. We did not do an amnio on Brooke, but there weren't any indications that she might have a disorder and we decided not to chance it.

They are still growing the cells to check for chromosome deletions, but it is highly unlikely there will be any with these results coming back good. We will get those results in 7 days.

We had a great dinner with Jennifer and Julie last night who each have a CDH baby. We asked a lot of questions and learned so much more about what to expect as we get closer to delivery. We learned a lot more about feeding after Kamryn is born and that it will still be an adventure after she gets out of the hospital. We also think we will look at Children's in Houston a little more closely now as an option. Thanks so much for having dinner with us and answering all of our questions! You all were really sweet to take time out of your evening to help us.

Talk to everyone soon!

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Another hurdle cleared!!

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

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