The last month has been a whirl wind in the Lees household... school, homework, class parties, doctor appointments, work, work and more work it seems... but finally we find life starting to slow down a bit.
Three weeks ago we took Spencer to Children's Mercy in Kansas City for his testing. We anticipated the echo under sedation followed by a heart cath to fix a defect. Overjoyed is what we felt when his cardiologist explained in the post-surgery consult room that the area he was concerned about was normal and a heart cath was not necessary. This 'area' had a very obvious difference in thickness from the rest of the ovale... it trailed off to a very thin membrane. There is no danger with it being thin, all the area needs to do is stop the blood flow between the chambers in the heart. Scott asked him directly if it closed off on its own over the last three months. We were answered with a smile and misty eyes and told we could take him home as soon as recovery released him.
This was a huge weight off our shoulders. For the first time this year, we felt like we could finally relax. I didn't realize how stressed I was until about a week before his procedure. I couldn't focus on the simplest of tasks. I even left my car keys laying on a shelf in the mall... so out of character for me. The evening we brought Spencer home from the hospital was the first night I actually had continuous and rested sleep since January.
Three weeks ago also marked the end of Scott's travel time for the season. He is home now until May with his suitcase unpacked instead of waiting by the door. Our routine has started to fall back into place as we try to figure out our 'new norm' as a family. Most days I question what 'normal' our life is supposed to hold. Our normal consists of a five year old proudly proclaiming he is looking for the 'perfect shade of pink and purple' flowers to take to his brother. Or asking to buy 'awesome' toys in duplicate to leave at the cemetery so that his brother can fly down from Heaven to get them. Almost daily I get asked when I will grow another baby in my belly... a baby that won't go to Heaven right away. Try answering that one without crying... and then try to explain why you are crying.... then wake up the next morning and go about your day while you listen to parents complain about the 'trials' of pregnancy or how hard life is with a newborn. Normal is looking through Spencer's school work and finding the 'family' picture he drew. A picture that includes Scott, myself, Spencer and Palmer. On the outside looking in, we may appear normal... but our normal always takes on a different twist.
Our new life does not always seem to fit the typical family mold... in some ways... but we are doing our best to grow into it each day. The part of our 'normal' that will never change is love. The questions may be tough and we may not have all the answers, but our love will never falter. As Spencer said last night, 'Mommy. I love you all the way to where my brother lives and back again.' I guess that is even better than the moon....
A heart that defied the odds and beat for 55 minutes after birth. Palmer blessed us with a short time on earth, but his ripple continues through tissue donation. This is a blog from a mothers perspective on life, love and faith.
Showing posts with label heart valves. Show all posts
Showing posts with label heart valves. Show all posts
Thursday, November 10, 2011
Thursday, September 15, 2011
How far will your ripple go?
Last week, we were invited by Midwest Transplant Network to participate in their yearly calendar. Each year they select 12 individuals from a pool of deceased donors, living donors, recipients and those on an organ waiting list. We were honored to be asked if Palmer could be featured. This involved going to Kansas City as a family for a photo session and filmed interview in a professional studio. I can not begin to describe the intimidation from the studio and the pure, raw nerves involved. Well you know me. If I am going to do something, I want to do it right. I left there feeling like I let Palmer down by doing a poor job sharing his story and how we came to our decision to donate. For as hard as it was emotionally, I wished I could have a do-over. For someone who has blogged her journey to anyone who would read it, I really came short with words. All I can say is that it was not eloquent and I am afraid I didn't make much sense. Combine the bright lights, camera, nerves and all the thoughts running through my head and I am afraid it equaled a mess. I know it was hard for Scott too. You have heard me talk about couples having to grieve separately and together. Well take two people who have not grieved together since their son's funeral, have a complete stranger ask some very personal questions and then record their every word and movement... I think you get my drift. Even though it was hard, I have no regrets. Even if our footage ends up on the cutting room floor, we made progress as a couple. So based on some questions they asked, I thought I would try a 'do-over'.....
My name is Jenny and this is my husband Scott. We are your average farm family living in north east Kansas.
We came in contact with Midwest Transplant Network while I was pregnant with our son, Palmer. At twenty weeks into the pregnancy, through a routine ultrasound, he was diagnosed with anencephaly. Anencephaly is a neural tube defect that is 'incompatible with life'. There was no guarantee how long he would survive... a few minutes, hours or days at most. After receiving his diagnosis we researched the possibility of tissue donation. His organs were too delicate for harvest, but his heart valves were a possibility if he met certain criteria. Our experience with Midwest Transplant Network was absolutely wonderful. They fully explained the donation process and offered wonderful support. A caring and compassionate nature was our first and lasting impression.
In hindsight, our decision to donate was easy. I say this simply because it was always the right thing to do. We are both registered donors. So really, why would we choose anything different for our children. But after you are given the news that your child will die, your thinking is not clear. The cliche 'our world came crashing down' becomes your reality. Simple tasks became unbearably hard. Our life seemed to come to a screeching halt. You question your strength and ability to continue a pregnancy that will ultimately end in death. But as you question your strength, you realize that you love this little being with all your heart and soul. Then you start to think about the other families who have been told that their child will die unless they receive valves. Each day, they watch their child slip away, fighting to live. This was our opportunity to turn our loss into someone else's hope. The days I wanted to lay in bed and ignore the world, I thought of these families and what donation would mean to them. Donation became my ray of light. It was my reason to get out of bed, put myself together and live my life for my child and the recipient family. Through donation I learned a new appreciation for celebrating the life of my child.
Each criteria milestone we met was a reason to celebrate. On the day of his delivery, the wild card was his weight. After he was born, the nurse reported his weight at 4 lbs 13 oz. I knew this would not make the cut and our nurse confirmed the news that he was rejected for donation. I was devastated. I remember looking up at Scott, watching him unwrap Palmer and listening to him say there had to be a mistake. He said he knew he weighed more based on his chest size and he demanded a reweigh. Scott was right. His weight was off by 3 ounces. Two families were gifted heart valves because of my husband. He often will say that I did all the hard work during the pregnancy. But I think those two families would agree, that his role that day was just as important as what I did the previous 9 months. That night, we were allowed 12 hours with Palmer before we had to give him up. We chose to give him to the harvest team a little over 4 hours after his heart stopped beating. We knew the sooner his valves were retrieved, the sooner a family would receive 'the call'.... the call that valves were available for their child.
Regardless of your situation or circumstances, consider donation. Talk about it with your loved ones and make your decision known. We all leave a ripple in life, reaching out and touching lives. Donation is a gift that leaves a ripple and touches more people than we really will ever know. Do your part and keep your ripple going.
My name is Jenny and this is my husband Scott. We are your average farm family living in north east Kansas.
We came in contact with Midwest Transplant Network while I was pregnant with our son, Palmer. At twenty weeks into the pregnancy, through a routine ultrasound, he was diagnosed with anencephaly. Anencephaly is a neural tube defect that is 'incompatible with life'. There was no guarantee how long he would survive... a few minutes, hours or days at most. After receiving his diagnosis we researched the possibility of tissue donation. His organs were too delicate for harvest, but his heart valves were a possibility if he met certain criteria. Our experience with Midwest Transplant Network was absolutely wonderful. They fully explained the donation process and offered wonderful support. A caring and compassionate nature was our first and lasting impression.
In hindsight, our decision to donate was easy. I say this simply because it was always the right thing to do. We are both registered donors. So really, why would we choose anything different for our children. But after you are given the news that your child will die, your thinking is not clear. The cliche 'our world came crashing down' becomes your reality. Simple tasks became unbearably hard. Our life seemed to come to a screeching halt. You question your strength and ability to continue a pregnancy that will ultimately end in death. But as you question your strength, you realize that you love this little being with all your heart and soul. Then you start to think about the other families who have been told that their child will die unless they receive valves. Each day, they watch their child slip away, fighting to live. This was our opportunity to turn our loss into someone else's hope. The days I wanted to lay in bed and ignore the world, I thought of these families and what donation would mean to them. Donation became my ray of light. It was my reason to get out of bed, put myself together and live my life for my child and the recipient family. Through donation I learned a new appreciation for celebrating the life of my child.
Each criteria milestone we met was a reason to celebrate. On the day of his delivery, the wild card was his weight. After he was born, the nurse reported his weight at 4 lbs 13 oz. I knew this would not make the cut and our nurse confirmed the news that he was rejected for donation. I was devastated. I remember looking up at Scott, watching him unwrap Palmer and listening to him say there had to be a mistake. He said he knew he weighed more based on his chest size and he demanded a reweigh. Scott was right. His weight was off by 3 ounces. Two families were gifted heart valves because of my husband. He often will say that I did all the hard work during the pregnancy. But I think those two families would agree, that his role that day was just as important as what I did the previous 9 months. That night, we were allowed 12 hours with Palmer before we had to give him up. We chose to give him to the harvest team a little over 4 hours after his heart stopped beating. We knew the sooner his valves were retrieved, the sooner a family would receive 'the call'.... the call that valves were available for their child.
Regardless of your situation or circumstances, consider donation. Talk about it with your loved ones and make your decision known. We all leave a ripple in life, reaching out and touching lives. Donation is a gift that leaves a ripple and touches more people than we really will ever know. Do your part and keep your ripple going.
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