Wednesday, July 11, 2012

Update on our Landon

I haven't written a post about how Landon is doing for a long time. This is because there hasn't been much to write about, he is doing fantastic! Apart from not being able to take him into many public places we are living a perfectly normal life. Whatever normal means anymore haha... but really he is doing great! We had a whole month with no doctors appointments! There was a couple issues with him turning blue and some digestive problems due to a new formula, but we somehow avoided a trip to the pediatrician, praise God!

Yesterday he had an appointment with his cardiologist, Dr. Fernandez. I was excited to find out how much he weighs now and see if his right ventricle has grown at all. I haven't been feeling the best, the last couple days, so Ryan took off part of the day so he could come with me. I cannot tell you how much it meant to have him there. Landon is getting big and hauling him and his carseat all around the hospital is no easy task. We got there and made our way to the heart and lung clinic for Landon's echo.

I just have to brag on my son for a while, he is so amazing. He was awake for the whole 45 min of the echo and didn't cry at all! He just stared at the monitor like he knew what he was looking at, as they poked and prodded him so they could get good pictures of his heart. He just amazes me everyday. The doctors were very impressed with him as well. During his echo, I realized that we were in the exact same room that I had my first fetal echo in. I was sitting on the same bed when I was told that my baby would need surgery if he was to live longer than a week. God has been so faithful!

After the echo he was weighed (13Ibs 9 oz) and had an EKG. Fernandez then came in and talked with us. I was so glad that Ryan finally got to meet him. Ryan and I make such a great team. I usually do most of the question asking, but I am always impressed that Ryan remembers everything and understands most of what the doctors tell us. After appointments Ryan usually spends the whole drive home explaining to me what the doctors just said. I was especially glad Ryan was there because Fernandez told us what the future will probably hold for Landon, concerning his heart.

He told us that right now Landon's heart is functioning great with the shunt, but his right ventricle hasn't grown at all. He said they most likely won't see any changes in it until he's 4 to 5 months old. He told us he would contact U of M and give them his echo results so they should call us and tell us when his surgery date will be soon. He thinks that they will want to perform a heart cath on him in September. According to Fernandez, they will inflate a balloon in his shunt to stop the blood flow and see how his heart reacts to that. If he gets enough blood to his lungs and the rest of his body with the shunt closed they will take it out and he should be fine. That is the best option we have right now. If his heart and body don't tolerate not having the shunt and his RV is not big enough then our only option will be to have the Glenn surgery. I've been researching information on this surgery, but I'm not able to find a lot. I want to try to explain it, but know that I wouldn't do a very good job so I'll simplify it by saying that it will be a open heart surgery that will, if successful, reroute his heart so that he doesn't have to use his RV. This will most likely require another open heart surgery in a couple years.

Please continue to pray that his RV will grow. Right now it is 50% so even a little bit of growth may make it big enough for him to use throughout his life. We so do not want them to have to open him back up. The thought of him going through that again makes me cry. We are believing God for a miracle.

No matter what the future brings, Landon is a miracle. I wish all of you could meet him. I wish you could hold him and see the love, joy, and contentment that he radiates. We are blessed everyday we have him in our lives and we will never stop fighting for him.

Thank you for joining us on our knees. We love and thank God for each of you.

1 comment:

The K. Family said...

I don't know what other people tell you, but Landon sure looks like I remember Matthew looking. So cute! I sure wish we could see him! It's nice to have something specific to pray about and we'll continue to pray for growth of the RV. It's nice for you to have an idea of what's going on and nice that you can have "normal" days!