Cardiologist Appointment

>> 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!

Shawn

3 comments:

Maxton's Mommy April 24, 2009 at 10:28 PM  

I think your wife is amazing too! You guys are such wonderful people. Thanks for making a donation in memory of Max. I am glad that his story touched you guys. I too struggled with "not being in control". During my pregnancy I had the thought that maybe God was challenging me to prove that he is ultimately in control... a hard concept for me to grasp, but I must say, I learned that I cannot be in control of everything because of this experience. When I was pregnant, I would have never imagined that if we had the outcome we did, that I would be as strong as I have been. I know that it is God (and i like to think Max too) helping me make it through and continuing to fight. Sorry, not sure what I am trying to get at here, other than I am thinking of you and your post made me remember when I was there. Hang in there guys!!! We will continue to be praying for you all. I know it is hard to read the stories of the ones that dont make it when you are expecting. Don't let it get it you down! Much love and many prayers..
Ash

Tracy Meats April 25, 2009 at 10:38 AM  

You and Stephanie make a great team together and together you are going to bring two adorable children into this world!! Praying that Kamryn comes out strong and ready for what life is going to throw at her. Stay positive for your precious child that she will overcome her CDH and do great things in her life!! So happy both girls hearts look great and are functioning like they should. It sounds like you have a wonderful support group of medical professionals looking out for Kamryn and Brooke. My heart goes out to you and Stephanie, for not knowing Kamryn's outcome is scary, but always remember God is blessing you with a gift that will forever change your lifes. Praying for Kamryn's miracle!

Much love and positive thoughts and energy coming your way,
Tracy - Ian's mom

Liz and Shane April 25, 2009 at 10:23 PM  

I remember the exact feelings of not being in control of the outcome. I asked the Lord to help me and give me strength no matter what the outcome. I praised him in the storm. We never gave up hope and we remained positive. I was happy being pregnant and didnt want to birth then there were times that I just too excited that I wanted Nayeli to come so we would know what was next. As the weeks approach try to enjoy your pregnancy as much as possible. Sing, read and talk to your litle girls. They are listening. Also dont give up hope. Miracles do happen.
Liz
Nayeli's mom

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