>> Friday, April 24, 2009
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!