Pennie
03-02-2006, 11:18 AM
Lukas Jon Edinger was born 3 months early due to the HELLP syndrome. Which is my high blood pressure, elevated liver enzymes, and low platelts. He was born weighing only 1lb 5.6oz and 12 inches long. He was so very tiny, but he did well on his apgars, so I was pretty positive. He was immediately transfered over to Children's hospital before I even really got to see him. And I was stuck at Lutheran until my enzymes and blood pressure went more back to normal, which ended up being 4 days. My poor husband, Jon, had to go back and fourth between hospitals, and bring me updates about stuff neither of us really knew what it meant. The day I got discharged from the hospital was the same day Lukas starting getting worse. He went from being on the conventional ventilator, to the High frequency ventillator, which pumped 680 breaths a minuite into his tiny little body. So he was constantly vibrating from that vent. The doctor came and told us that he had very severe chronic lung disease, and would be on this machine until he got better. Over the next many weeks Lukas had all kinds of other problems. On top of having at least 1 x-ray of his chest, he had brain scans to check for bleeding, scans of his kidneys, and heart. He had 2 chest tubes put in one night to pull the air out of his chest cavity because he suffered from holes in his lung, which allowed the air to escape from his lungs into his chest cavity. He had a horrible infection,that took like 8 weeks of very strong antiboitics. At the same time he had a blood clot in his leg, so he was also on a blood thinner. He also had very weak bones, so he had a few broken ones. His arm was the worst one, it caused him alot of pain, he would cry when you barely touched it. We went through very many ups and downs during his 3 month stay there. Phone calls in the middle of the night saying we should come in cause they werent sure he would make it though the night, doctors telling us on a daily basis they were sure if he could survive this. In our minds we knew he was very sick, but he seemed to be doing so well.
Then we had a care confrence with the doctor's who said we had one more thing we could try, but it was the last thing they could do for him. We decided to have them start a very high dose of steroids for his lungs, hoping it would help him get back to the conventional vent and last on it when the steroids were done. The steroids were a 6 week run, gradually weining him off of it after the big doses. After a week or so, his numbers started going down, which meant he was getting closer to the conventional vent, so it seemed to us they were doing what we wanted. Being on the conventional vent would just give his lungs the time they needed to heal on their own. which they couldnt do on the oscialtor. On November 19, 2 of Lukas' nurses made it possible for me to hold him for the first time. It was a very uncommon thing for a baby on the oscialtor to be held. but they got the doctor's permission, and they just did it. It was wonderful, I will never forget that day. He was so happy to be in my arms, he just slept peacefully. all I could think was finally, he was 8 weeks old at this time. it is so hard seeing your child everyday in an incubator hooked up to all these machines and not being able to hold them.
Then on December 1st His lungs had improved enough to go to the conventional vent, it was a great day! Things looked good, to us anyway, but the steroids were doing alot of harm to other parts of his body at the same time. They were making his bones even worse, this is when he suffered from the broken arm. They were also deteroiting his liver. So he was still very sick with a very long way to go. The nurses were all talking about how he would most likely have a tracheostmy, which is to have the ventilator tube though his throat. We got to the point when that was ok, we could handle that, at least he would be here. Soon after that as they were weining the steroids, his numbers started heading back to the oscillator. We got a call that Sunday morning (Dec 18th) from his primary nurse, Kerry, saying she had to get him set back up on the oscillator. I just cried and cried, even though deep down I knew it was coming. So we went in that day, and set up another conference with the doctors. At this meeting they told us they were very sorry, but there was nothing else they could do for him, and we needed to make the choice of taking him off of life support, or leave him on the oscillator, and let him go that way. One of Lukas' doctors said something to us that day that I will never forget. He said we did the right thing trying the steroids, and it wasn’t useless doing so, because the result of the steroids may not have turned out the way we were hoping, but they gave us that few extra weeks, where we got to hold him as much as possible, and give him baths, the steroids gave us the time to bond with our son. We decided that day we would go ahead with taking him off of life support. The meeting was on Monday, and we decided to do it on Tuesday, because we were so close to Christmas, and we didn’t want to wait until after, because we didn’t think he would make it that long. When the nurses asked if we would be interested in having a photographor come and take before and after pictures, I wasn’t sure. But we decided to have them come, I think that is one of the best decisions we have ever made. Cheryl, Sandy and the rest of the crew were so wonderful with Lukas and us. I am very greatful for them. On Tuesday December 20, 2005 around 3:30 pm we removed the breathing tube, and the nurses placed him in my arms. I held him up to my chest rocking him and thought I wanted to see his face without any tubes, so I held him out so we could look at him, he opened his eyes and looked at us for a brief moment, then shut them again. It was like he was saying thank you, and goodbye. He died one day before his original due date weighing in at 5lb 4oz. The pictures and a few of the things Lukas had with him at the hospital are all we really have, besides all the memories. And the pictures and the DVD came out absoutley beautiful. He is such a beautiful boy.
I felt it was time to share my story with everyone, Lukas would have been 6 months old on March 18. I believe my Jon and I have done very well with grieving, and still living life and taking care of my step son. Deep down I think we both knew that it could happen at any time, and we are greatful we got spend as much time with him as we did. And now he is in heaven watching over all of us. :)
Then we had a care confrence with the doctor's who said we had one more thing we could try, but it was the last thing they could do for him. We decided to have them start a very high dose of steroids for his lungs, hoping it would help him get back to the conventional vent and last on it when the steroids were done. The steroids were a 6 week run, gradually weining him off of it after the big doses. After a week or so, his numbers started going down, which meant he was getting closer to the conventional vent, so it seemed to us they were doing what we wanted. Being on the conventional vent would just give his lungs the time they needed to heal on their own. which they couldnt do on the oscialtor. On November 19, 2 of Lukas' nurses made it possible for me to hold him for the first time. It was a very uncommon thing for a baby on the oscialtor to be held. but they got the doctor's permission, and they just did it. It was wonderful, I will never forget that day. He was so happy to be in my arms, he just slept peacefully. all I could think was finally, he was 8 weeks old at this time. it is so hard seeing your child everyday in an incubator hooked up to all these machines and not being able to hold them.
Then on December 1st His lungs had improved enough to go to the conventional vent, it was a great day! Things looked good, to us anyway, but the steroids were doing alot of harm to other parts of his body at the same time. They were making his bones even worse, this is when he suffered from the broken arm. They were also deteroiting his liver. So he was still very sick with a very long way to go. The nurses were all talking about how he would most likely have a tracheostmy, which is to have the ventilator tube though his throat. We got to the point when that was ok, we could handle that, at least he would be here. Soon after that as they were weining the steroids, his numbers started heading back to the oscillator. We got a call that Sunday morning (Dec 18th) from his primary nurse, Kerry, saying she had to get him set back up on the oscillator. I just cried and cried, even though deep down I knew it was coming. So we went in that day, and set up another conference with the doctors. At this meeting they told us they were very sorry, but there was nothing else they could do for him, and we needed to make the choice of taking him off of life support, or leave him on the oscillator, and let him go that way. One of Lukas' doctors said something to us that day that I will never forget. He said we did the right thing trying the steroids, and it wasn’t useless doing so, because the result of the steroids may not have turned out the way we were hoping, but they gave us that few extra weeks, where we got to hold him as much as possible, and give him baths, the steroids gave us the time to bond with our son. We decided that day we would go ahead with taking him off of life support. The meeting was on Monday, and we decided to do it on Tuesday, because we were so close to Christmas, and we didn’t want to wait until after, because we didn’t think he would make it that long. When the nurses asked if we would be interested in having a photographor come and take before and after pictures, I wasn’t sure. But we decided to have them come, I think that is one of the best decisions we have ever made. Cheryl, Sandy and the rest of the crew were so wonderful with Lukas and us. I am very greatful for them. On Tuesday December 20, 2005 around 3:30 pm we removed the breathing tube, and the nurses placed him in my arms. I held him up to my chest rocking him and thought I wanted to see his face without any tubes, so I held him out so we could look at him, he opened his eyes and looked at us for a brief moment, then shut them again. It was like he was saying thank you, and goodbye. He died one day before his original due date weighing in at 5lb 4oz. The pictures and a few of the things Lukas had with him at the hospital are all we really have, besides all the memories. And the pictures and the DVD came out absoutley beautiful. He is such a beautiful boy.
I felt it was time to share my story with everyone, Lukas would have been 6 months old on March 18. I believe my Jon and I have done very well with grieving, and still living life and taking care of my step son. Deep down I think we both knew that it could happen at any time, and we are greatful we got spend as much time with him as we did. And now he is in heaven watching over all of us. :)