Cardiologist Appointment

The anxiety we feel every time we go to an appointment is overwhelming and today was no different. We had our second Cardiologist appointment today to get more conclusive evidence about the structure and function of Brooke and Kamryn's hearts. It's important to know that there isn't a heart defect before birth as this would only complicate an already critical situation. The first time we went to see Dr. Day, he wasn't able to see every part of Brooke's heart due to her position so he wanted to have the appointment today to make sure all was clear. Walking in, there was that nagging feeling that something new might show up and throw us another challenge that I am just not sure we are prepared to deal with emotionally. We were blessed with a wonderful report that everything looks perfect structurally and both hearts function like they should. We are both incredibly relieved. I think we now know everything we are dealing with and there shouldn't be any surprises (until they are born).

I talked about our experience after our first appointment with Dr. Day and just have to say again how impressed we were with him and his staff. I truly think we would be completely crazy at this point if we didn't have such amazing doctors caring for us. Dr. Day spent so much time with us and explained everything that he was looking at and also spent a good deal of time explaining how the heart and lungs function together in CDH babies and the complications that go along with that. He's just an amazing doctor and person.

We have setup an additional MRI at 33 weeks to get a more conclusive answer to the liver position along with better lung volume numbers. Our first MRI in Houston wasn't all that clear due to noise in the images and while Houston believes 15% of it is in the chest, the medical team here in Dallas isn't ready to come to the same conclusion. I think with better images they will be able to tell for certain. The test obviously doesn't change anything including the care and outcome, but will possibly prepare us better for what we might be facing.

Overall I think Stef and I are holding up pretty well given everything in front of us. I do feel myself getting more scared and anxious because we are getting close. For months I have wanted to get on with the show and tackle this, but as we get close I want to put the brakes on. The babies are perfectly fine right now in Stef and a part of me wishes it could stay that way so they could be safe. I am worried about how I am going to hold up and how well I will be able to give up control. I hate not being in control of a situation. I have learned through this experience to appreciate life and the blessings we have so much more than I used to. As I learn to appreciate it more, my fear increases at the thought of losing a child. I haven't lost my optimism, but I have tried to remain as realistic as possible. There has been so much sadness in the CDH community these past few weeks and it makes the horrible possibility of losing Kamryn all the more real. I don't like to admit it, but I am honestly more scared than I think I have ever been in my life including my testicular cancer episode. Never thought anything would compare to that, but I have learned to never say never.

I can't end this without acknowledging what an incredibly strong and determined wife I have. I can see her in so much discomfort everyday and sat next to her on the bed during the tests today knowing that she was so uncomfortable. She doesn't complain and takes everything as it comes with a great attitude. She's incredibly strong and I am proud to be her husband. Love you Stef!

Shawn

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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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