Wednesday, April 11, 2012

Happy Easter & Jordan's Autopsy Results

Like the final chapter of an amazing story, we had the opportunity to discuss Jordan's autopsy results with a neonatologist from CHOP today. We had looked forward to hearing the results because we wanted to know the full story - what was going on inside Jordan's body that prevented him from surviving? In the back of our minds, there was a fear that maybe the results would point to a mistake or lead to more "what if" scenarios. Ultimately, we knew we had to press through those fears because we wanted to know the truth.

The peace that has held us through this entire journey was with us again today. Thankfully, Jordan's autopsy only confirmed what we already knew: Jordan was very, very sick. The size of his hernia was quite large, which allowed so much "stuff" up into his thorax. The severity of his condition was significant. The pulmonary vessels were maligned - not able to grow and develop as they were intended to - making the pulmonary vessels thick. They compared the alveoli to a tree that had been pruned. Without the alveoli being properly developed, the gas exchange becomes quite difficult. On top of this, Jordan was still suffering from pulmonary edema. The normal lung mass of a child his size is around 60grams. Jordan's was 120grams at death. That's significant when taking into account that his left lung was so small. Clearly, the anatomy of his lungs left him very sick.

Jordan's heart also began failing. It was working extra hard to push blood downstream into the lungs. The normal weight of the heart is 25grams and his was 35. The right ventricle in particular was inflamed. They are unable to see organ tissue on an X-ray and were unable to see just how sick he was.

The doctor confirmed that Jordan's autopsy matched how he acted during his final days. She also mentioned that they wouldn't have changed anything given their current procedure and technology. We tried everything we could to give Jordan a fighting chance. The amazing thing is that he took that opportunity and ran with it. They again mentioned how tough Jordan was to fight through everything he faced. He was much sicker than he let on. He never gave up and always fought for life.

This Easter weekend took on even more significance now that we have experienced the death of our son. If it hadn't been for our undeterred faith in what the Son of God accomplished in His death and resurrection, we would have been lost in a sea of chaos. Our appreciation of what our Father God and His Son accomplished in preparing everlasting life has grown leaps and bounds. During our phone conversation today, CHOP commented on how well we have rebounded in this time of loss and have already begun to use this experience in a positive way. The truth is, we simply loved our son and we knew what the Son of God did for us on the cross. We always had faith that Jordan would have a home in Heaven, even if he didn't make it here on Earth. We fought as hard as we could to give him an opportunity to live a life here. But, we always knew that no matter what the outcome, he would have a home.

The price that our Savior paid paved the way for us to have hope. Hope that no matter what happens in this lifetime, you can't take away eternity with our Father in Heaven. Our faith in what was accomplished on the cross seals our fate. Thank You God for everlasting life. Thank You for forgiveness. Although sometimes we are stripped bare and feel like we have nothing left to hang on to, we always have Christ...

Happy Easter everyone!

8 comments:

  1. God bless you! You and your family have been in our prayers!

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  2. Just saw your video; it is beautiful.

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  3. wow! You guys are so strong. I wouldn't know what to do in your case except for trust in the lord! I haven't even met you guys, but i already love you all for staying so strong and showing your trust in the lord! My mom use to tell me, "If God leads you to it, He will lead you through it." I am so heartbroken seeing this story and i know you are to, and if you ever need someone to lean on or talk to, feel free to let me know. God bless you guys!

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  4. I just watched the YouTube video "In Memory of Baby Jordan". I was so heartbreaking, it brought me to tears. I believe you two are very strong people. I don't know what I would do if I had to go through that. I had my son on April 26, 2011 and he was hospitalized at 5 days old with Meningitis and that about killed me. I will keep all of you and baby Jordan in my prayers. He is with the lord and looks down on you everyday as he grows in God's care. Keep strong and moving on and I wish all of you well. God Bless, Meghan.

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  5. I want to start out by thanking you for sharing Jordans story. Even though it is heartbreaking and brings me to tears, it also gives me hope. Your strength and faith is very inspiring. I just watched Jordans video and there is no doubt your little angel is a fighter. He fought to give you that time with him, so that you could know him and feel his love. My son was born on September 5th of this year with a chromosome disorder called Trisomy 3. With it, came many medical issues, but ultimately he passed on November 2, 2012 from Pulminary Hypertention in his lungs. "Jase" gave me 59 wonderful days with him that I will cherish forever. He too was a lot sicker than he led on. Your words restores my hope that we will see him again.
    "Although sometimes we are stripped bare and feel like we have nothing left to hang on to, we always have Christ..."
    Those words will stay with me. I know that Jordan and Jaysen are in Heaven together healthy, pain free, having fun, and feeling lots of love in the arms of our Father.

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  6. Hey You share really good blog here. You share some good information on Pulmonary edema. Pulmonary edema is an abnormal buildup of fluid in the air sacs of the lungs, which leads to shortness of breath.
    Pulmonary edema is often caused by congestive heart failure. When the heart is not able to pump blood to the body efficiently, it can back up into the veins that take blood through the lungs to the left side of the heart.
    Blood Clot Symptoms

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  7. After watching the video of your baby Jordan on YouTube I can not find words that could explain how sad I am for your loss. I have to say I cried the whole time of watching. I actually watched the story few times and cried each time. It has been already three days since I found the video and I can not get that image out of my head. I looked up the website dedicated to this beautiful and precious little boy to find out why he had to go. His story touched my life in many ways. I am a mother of three beautiful children who are 5years old, 3 years old, and 5 months old. My youngest one was taken from me to NICU just one hour after C-section because his lungs were not completely developed and he could not breathe on his own. Once I saw him attached to all those tubes and machines my whole life crashed. I could not stop crying and blaming myself that it was my fault and I failed as a mother as I did not protect him. Now I know it was not my fault and there was nothing I could do but pray and hope for the best. I was never that scared in my life. Although I was in pain and very tired I spent as much time by his bed as I could. I did not want to leave him even for a minute. It was extremely hard to see him and not being able to even touch him. All I wanted to do was to hold him and keep kissing him. Fortunately 5 days into his stay I was able to hold him for the very first time. I will never forget that beautiful feeling I felt that moment. Seeing baby Jordan brought back all those memories and pain and fear I felt. Your little boy really resembles my little baby and I believe that is the reason your sad story touched my heart so much. On one hand I feel very blessed that my baby boy survived but on the other hand my heart is hurting because of your loss. I can not even imagine that horrific pain you had to feel when you could not help your precious baby you ended up loosing. Therefore I was glad to read that you were expecting your new baby last March. I hope that both of your children - your older son and your baby girl are healthy and doing fine. You definitely deserve the best. No parents should ever experience the loss of their children. I can not even imagine how I would live through so much pain. You are very strong. My prayers are with you and your little angel.

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  8. When my baby boy is in some kind of pain he always looks at me and I can tell he is begging me to help him. When I watched the video of your baby Jordan I thought he had the same look in his face. It broke my heart. But I was so wrong. As I watched the video over and over I actually noticed your baby was looking at you with a lot of love and calmness. Like he understood the pain you were feeling and he wanted to reassure you he was going to be O.K. once he goes to heaven. Even everything he was going through your little angel was the one trying to give you the strength. He didn’t want you to be sad for him anymore. Jordan looked so peaceful, strong, and full of love for you. Please stay strong. You and your precious baby are constantly in my prayers!

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