Tuesday, March 12, 2013

Meeting Heart Dada

I am so sad that it has taken me this long to post. I think facebook has taken away some of the need to post, but I love having this to look back on. On December 31, 2012, we were able to do one of the most special things anyone could do. We met the name that saved my son's life, the man who gave us the give of the last 3 years and many more to come. We met Troy, Landen's donor dad. In December, I told Landen that we were going to met Claire's dad. He thought about it for a moment and said, "Heart Dada." I was surprised he put it together. He knows that Claire gave him his heart. If you ask him what Claire gave him, he will usually lift up his shirt, point to his scare, and say "heart." He has a poster of Claire and her older brother Carson on his wall in his room, just above his bed. Landen wanted to see a picture of "Heart Dada," so I showed him his facebook profile. Throughout the rest of the month, Landen only 2 1/2 at the time never stopped talking about "Heart Dada." On Christmas Eve, since Landen had never met Santa Clause and the idea of him sitting on a Mall Santa Clause's lap about gives me a panic attack, my friend let me borrow her husband's costume and Joe dressed up after work. When "Santa" knocked on the door. I told Landen someone special was at the door. He got a huge smile on his face and said "Heart Dada." I told him it wasn't Heart Dada, but it was someone else special. He started to cry. All he wanted was to see his Heart Dada. He still wasn't excited about Santa Clause, but at least I got a few pictures. Next year I think we are going to have to get another Santa because the kids were not fooled. It might be because Santa usually doesn't have braces. As the date to meet Troy came closer, I was so afraid that I would just be an emotional mess. For those of you who know me I am very sensitive and cry very easily. I thought all I would do was cry. As the day finally came, the emotions turned to excitement. I was so excited to be able to meet Troy and tell him thank you. I was most excited about having Landen meet him. I was not sure what Landen would do. He is really not around other people much. We do not live near family and most of the people Landen sees are doctors, nurses, therapist, and phlebotomists. So, I wasn't sure how Landen would react. On the morning of December 31st, we all got ready for the big day. Joe took Landen to get some pancakes because he is obsessed with pancakes. The other kids and I got things ready for Troy to come. We planned on meeting at 9am in the back lobby of our hotel. As I saw Troy come to the door of the lobby, I was a little emotional, but more excited. I was so excited to have him meet Landen. It was so great to see him. I cannot imagine how he felt. Was it as exciting for him? Or was it hard? I am not sure. I just cannot imagine what emotions he would have felt. Landen came downstairs and ran right past me and right into Troy's arms. On a side note, Landen has never ran before. We have been working on his is therapy for months. He was not afraid at all. I really feel like he knows him. I know that might sound crazy, but I have never seen him so excited and calm. He usually doesn't ever leave my side. Landen brought both Heart Dada and Heart Mama presents. He gave Heart Dada a statue of a Lion and a small lamb lying together. It is the same statue we have above our fireplace. He gave Heart Dada a present to give to Heart Mama when the time is right. He gave her 1/2 of a heart necklace that said "And the Lion fell in Love with the Lamb." My half says "And the Lion" with a lamb charm and her half says "With the Lamb" with a lion charm. Troy had asked if he could bring a stethoscope to listen to Landen. His physician friend who was with him in the hospital when he had to make the decision to donate had given it to him. When he told me he wanted to listen I was so excited. We were planning on bringing our stethoscope, but I wasn't sure who to bring it up. I am so excited that he wanted to do this. He let Landen listen to his heart and then he was able to listen to Landen's heart. But, it wasn't Landen's heart he was listening to, it was his baby girl's heart. His baby girl, Claire, beats inside Landen. This baby girl keeps my baby boy alive each day. As he was listening to this beautiful heart beat, a smile came over his face. It was a priceless moment that I will never forget. I try to imagine how this felt to him, but I just cannot imagine it. Even months later it brings tears to my eyes. After that Troy, Joe and I sat down and were able to talk about the accident, his decision, and "the lamb." We have discussed many these topics by letters and emails, but face-to-face we were able to put things together that we hadn't put together before. I remember the day we found out they found a match for Landen. I remember and to this day still feel the emotions associated with the news. We were so excited for our son. He would have a chance at life. We were no longer going to see him get worse. Days before they found a match, Landen's heart continued to get sick. The monitors consistently went off. He was missing heart beats. He was having "ventricular" heart beats. Later I found out that those are what would have killed him. His ecko was so bad the doctors did not even give us the results until one of the interns gave us the results by accident. The nurses later told us that no one wanted to be over Landen. We couldn't understand why because he was actually a really good baby. They told us they thought he would die on their shift. At the same time we were dealing with this, Troy was dealing with much worse. He had made the decision to donate Carson's organs the night before and now he had to make the decision for his baby girl. His wife was in a coma at the time, so it was all up to him. He not only had to make this decision, but he had to think about what his wife would want. Troy had stated beautifully in his first letter to us about his decision with his son Carson: "regardless of all the hospital's modern medical technology or (his) own willingness to do anything, go anywhere or spend everything (he) had, he would die. The only question was what his legacy would be. Would people remember him as the tragic and sad victim of someone else's terrible choices or would they remember his as a happy little boy who brought a smile to everyone's face, as the superhero and Jedi Knight that he thought of himself as. It was not a easy decision but I came to realize that this was his chance, in death, to be the hero that , in life, he knew himself to be." As we sat there and spoke we were able to here more details about what it was like for him waiting for the match. It took them a long time to place Claire's organs, namely the heart. Troy was not sure why it took so long and why do many tests were ordered. The reason it had taken so long was it had to get all the way to us. Because Claire's heart had been resuscitated it was considered "high risk." Many transplant centers prefer to not do high risk transplants, our hospital included. But, to us, it had to be "high risk" or it would not have made it to Landen. I remember hearing that 17 people higher on the list than us (in different regions) had said no. The reason for this is this was Landen's PERFECT heart. Although it was high risk and incompatible, this was Landen's PERFECT heart. When asked about the stuffed lamb that Troy sent with the heart, he said it was just sitting in her bed as they were taking her to surgery and the idea to send it just popped into his head. He talked to the donation coordinator and they said they haven't heard of anyone sending anything and didn't know if that would be okay. On a side note, at this time, they called our hospital to ask us if it was okay for them to send a gift and would we accept it. Troy said that he thought they were just telling him that they would take it, but he didn't have much hope of it actually making it to us. This beautiful and thoughtful gift meant so much to us. It arrive at the same time at the heart. It was about 3am and Landen had been in surgery for 3 hours already and had at least 3 more hours of surgery. When we saw the gift tears came down our faces. How could he think about us in the middle of everything he was going through? We knew that our donor's family was an amazing family. We ran upstairs and got Landen's matching Lion that had been in his bed since the day he was born. We put the stuffed lamb inside the arms of the Landen's stuffed lion and waited for the news that the new heart, Claire's heart, was beating inside our son. I can still remember the emotion that happened that night. This little stuffed lamb made the idea of someone else's sacrifice so real. We knew that as we were hoping for a new life for our son, someone else would be saying good-bye to theirs. This was a horrible feeling, but we prayed each day for our son, but also for the family that would be giving our son this gift. After our talk, it was time to say good-bye to him. Landen gave him another hug and so did Joe and I. It was a great experience meeting Troy. I was so surprised that I did not cry through the meeting. I think the excitement helped. But after Troy walked through the door and got in his car, the emotions started to come. That day and the nights followed were very emotional. I just cannot imagine the pain of his loss. I hoped that he knew and continues to know how much his family means to us. I worried that it did not turn out how he had expected. But, I hoped that he enjoyed the meeting as much as we did. The last few months Landen continues to talk about Heart Dada. WE have a puzzle of the United States that he loved to do. He calls it "Heart Dada Puzzle" because soon as he finishes it he wants to know where Heart Dada lives. I point to Iowa and he says "Oh, Iowa." We do this puzzle almost every day. He also carried around a picture of him and Heart Dada and shows everyone he knows. I am so excited that we were given this opportunity to meet someone so special. We look forward to meeting again someday.

Thursday, August 30, 2012

Celebrate Life Memorial

I was asked to speak at the Celebrate Life Memorial last weekend. I was so nervous going into the event, because it would be the most people I have ever spoken in front of and it being such an emotional topic. At this event they would be unveiling the new names that have been engraven on the monument. These are people who have donated an organ or given years worth of blood. These are the people, who saved my baby boys life, amoung many others that they have saved. I am so grateful for them, but how do I express that. How do you say thank you for such a gift. This is the speech I came up with. It was not perfect, but I just hope it delivered the message. The message of gratitude and also the miracle that can come from tragedy. Copy and paste this link to watch the video. http://youtu.be/VmmNRG0-YKk

Tuesday, July 10, 2012


Well, this has been a rather long last couple of days. We had transplant clinic on Thursday and I was expecting a great clinic visit. Landen looks and acts great. When our cardiologist came in to see him she said she did not know what to think. I was very confused...he looks great. She said heart wise he is great, but his spleen and liver feel enlarged. She decided it would be best to get an ultrasound to see how large the spleen is. His lungs also sounded crackly. I mentioned that when he takes big drinks of water he usually chokes and vomits. She decided it would be a good idea to do a swallow study. On Friday, I took Landen to do the ultrasound on his abdomen. They did find both his spleen and liver enlarged. At 5pm that night I got a call from transplant with the results, however, imaging had been trying to get a hold of me because they needed to do a few more pictures to make sure of something. Of course, this was Friday at 5pm, so that means I will have to wait through the weekend. On Monday, we went back to do another ultrasound. Come to find out they though they had seen an enlarged lymphnode, but it turned out to be his spleen. A normal spleen his age should be about 7cm, but his was 9.5cm. That evening I talked to the transplant team and they said that they wanted to consult with genetics and oncology about the results. The words "consulting with oncology" is not something no one ever wants to hear. On Tuesday, we had the swallow study scheduled and transplant wanted us to stop by on our way out. A couple of my transplant moms who are staying in the hospital with their sweet little kids were having lunch in the cafeteria so they told me to stop by if I had a minute. I thought I would say "hi" as I was waiting for our transplant team. As we were talking, Dr. E (our cardiologist) and Emily came to the cafeteria to catch up with me. They sat down and asked if it was ok to talk in front of my other friends. I told them of course, I would tell them anyhow. I love Dr. E and Emily...they are amazing. Anyhow, Dr. E said that it could be one of two things...an infection he is fighting off or cancer. She made an appointment for us to meet with oncology that afternoon. Since Landen got the Ebstein Bar Virus (EBV), or mono, last November, he is at risk for PTLD which is basically cancer. So, when Dr. E mentioned the chance of cancer I thought this was most-likely what she was thinking. So, Landen, myself and my friend Shauntelle headed up to oncology to see what they thought. After doing a physical, answering questions, and doing some blood work, we were able to meet with the Dr. The appointment seemed to go well. He thought Landen looked very good and that most patients with cancer looked sick. I asked the Dr. about PTLD and he mentioned that they were looking for Leukemia because of his syndrome and enlarged spleen and low white blood count. I was able to leave the appointment feeling a lot better. We will continue to be monitored by oncology through transplant. Hopefully his enlarged spleen will resolve itself and we wont have to see on oncologist again. I am grateful for our amazing doctors and the rest of the transplant team for doing there best to take care of our little lion. I am also grateful for prayers and the peace and comfort we can receive through them.

Thursday, June 21, 2012

Annual Heart Present

As many of you know when we received Landen's life-saving gift two years ago on Mother's Day, our donor family also sent another gift, a stuffed lamb. Our donor family's dad, Troy, did not know at the time that Landen's middle name was Lion and that he from birth had a stuffed lion in his bed. He said he saw the stuffed lamb in his little girl's bed and the thought came to his mind to send it along with the other most precious gift, a new heart for our son. This gift has given us comfort both on the day we received it and everyday since. Our beautiful little donor was a 5 month old baby girl named Claire. Her and her 5 year old brother Carson passed away as a result of a car accident. Between these two amazing kids they were able to save 10 people. Troy said in his first letter to us, that his son, Carson, was able to be the superhero he always thought himself to be. These two beautiful kids are superheroes and we love them and their family dearly. We continue to have and will always have a picture of Claire and Carson and the lamb and the lion as a memory of this life-saving gift. Each year on our heart anniversary, May 9th, the kids make a build-a-bear stuffed animal and give it to someone who is in need of comfort in memory of Claire and Carson. This year the kids made a bear for a baby in England. We had meet this family over the internet on our LEOPARD syndrome facebook page. There little boy, Owen, had the same heart condition as a result of LEOPARD syndrome. At 8 months old,Owen who was clinically well, had a sudden cardiac arrest at home. He was resuscitated but he had a downtime of 33 minutes and has suffered considerably. Owen was not suppose to live through the evening, but this amazingly strong little boy fought for 8 weeks. This story hit close to home because of the similarities between Owen and Landen. Also, Owen's birthday is the same day that Landen was given a second chance at life. Before his passing we sent both him and his older brother a build-a-bear. Owen's parents are amazing. They have been an example of strength for my husband and I. They enjoyed every moment they had with their strong little boy. I am so glad that Landen has came to our family for many reasons. One of the gifts we received since we had Landen was the opportunity to meet such amazing kids and their parents. The kids that I have had the opportunity to meet or at least hear about have unbeleiveable strength and courage. I think they should all have "LION" as their middle names because of their fighting spirit. Thank you both the DeJoode family for giving us these last 2 years with our son that we would never have had. And also thank you to the Zander and Anna Sen. We admire your strength and courage through your trials.

Sunday, February 26, 2012

Hotel on the Hill...

Landen had been sick for a few days...mainly fever, cough, and a high respiratory rate. So, Joe took him to a close hospital to get him suctioned. They, of course, did not like his respiratory rate so they wanted to admit him. We told them we would take him up to Primary's since they know him there and his transplant team is there. We took him to the ER and they admitted him on Friday night. He is doing well, he just needs some oxygen. We found out he has, besides Human Metapneumovirus (hMPV), he also has C-diff, an ear infection (tubes only last 1.5 months) and pneumonia. He is on a little oxygen and they are starting an antibiotic...He is doing well and hopefully not be too long of a stay. Please keep him and all the other kids there in your prayers.

Sunday, February 19, 2012

Family Pictures

I think sometimes when things are going well, I forget to write down on the blog about how great life is. Why is it easier to write down when we are in the hospital with sickness than it is while we are home and things are going well. Landen is doing great, his heart and his health. We have not been admitted to the hospital since October which is a record for Landen (4 months). He is doing so well. Still delayed in talking, but he is starting to say more. His speech therapist says he just doesn't like to put his lips together, which is how you make a lot of letter sounds. He is walking and running and even trying to jump. He is happy and doing very well. We are so grateful.
Tuesday we go in to the geneticist. Hopefully, no surprises this time. Last time he told about the deafness possibility, eye problems, and skeletal problems...none of which Landen has right now...yeah!!!

Friday, January 27, 2012

Happy Birthday to Me

Well, this message is more about Landen's Heart Cath and Biopsy than about my birthday. However, because of his wonderful biopsy, I, too, had a wonderful birthday. The doctors said his biopsy could not be better, it was perfect, which means no rejection. In October the wonderful transplant team took Landen off one of his anti-rejection meds (Imuran) because he was having a hard time fighting off viruses (such as EBV or mono). By taking him off this med he had the potential to reject, but he has not. So, we get to stay on a really low amount of anti-rejection medication, which is good.
After the biopsy, I met with the transplant team. We were talking about the wonderful heart that Landen had recieved. The doctor told us, that it was a miracle that Landen received that heart, that that heart was for him. The reason it was so surprizing we recieved the heart we did was because it was so far away. Others in two other regions had to pass it up in order for us to receive it. We know that our Father in Heaven had a role in giving us this beautiful heart. I truelly believe that if we did not receive this heart, Landen would not have made it. He was in final stage heart failure and each day seemed to be getting worse and there was nothing more we could do. We are so thankful for that heart, and the baby girl that gave it to us. We are grateful to the wonderful DeJoode family for not only the miracle gift of the heart, but for the beautiful lamb they sent with it. They are an amazing family and we are so lucky to be able to communicate with them. We love you and our prayers will continue to be with them.