Mighty Max's Little Heart
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October 2nd, 2014 was one of the best days of our lives and one of the worst. Our beautiful baby boy "Max Vohs Keisman" was born at 1:12 am in an easy childbirth. We were overjoyed and felt so blessed as we first looked into his eyes. Over the next 24hrs several doctors checked on him and thought he was perfectly healthy. We packed up our clothes and brought in the car seat excited to bring the newest member of our family home when the nurse performed one last test. This test saved his life.
After several more tests Max was diagnosed with a single ventricle heart defect. When we heard the news we were devastated. The doctors told us that Max needed to be transferred to a world class hospital to receive life saving surgery. When we arrived at the pediatric cardiac intensive care unit a team of doctors performed a high resolution EKG to learn the specifics of his condition. They confirmed that our baby boy had a heart defect that would kill him in weeks if not treated.
We have been living at Lurie Children's Hospital in Chicago since Max was born. We spend our days and nights by his side cherishing every moment we have with our son. We feel so blessed that he has been given this chance at life.
Max was diagnosed with a double inlet left ventricle (DILV) single ventricle congenital heart defect. Over the past week we have learned everything that we can about this condition. 30 years ago nearly every baby born with this disease died in the first weeks of life and the children that survived often had a miserable life. Today when diagnosed early most children survive and many have a happy healthy childhood.
A Single ventricle defect is when only half of the heart is functional. Max will need at least 3 open heart surgeries in the first 3 years of his life to better adjust his body to working with only half a heart.
When Max was 5 days old the doctors performed the first open heart surgery that will keep him alive for at least 5 months until they can perform the next surgery. Even though the doctors were very confident about his chances, when they took him away we nearly stopped breathing because we were so worried. When it was over, the lead surgeon let us know that everything went as expected and he was optimistic about his recovery. We could finally breathe again.
Over the following night and day they removed one machine after another. 12 hours after his surgery we could hold our son again. While in our arms he opened up his eyes and we knew everything would be alright. Last night we were allowed to bottle feed him. From what the doctors are saying, it seems like we will be able to take our son home in the next few days.
Max will need at least 2 more surgeries where they stop his heart and change the way his blood flows. We haven't even started to think about this as we are living one day at a time.
We have decided to nick name him "Mighty Max" to remind us, as parents, what he as already overcome and to give us the courage in the days ahead. We are very overwhelmed by all of the decisions and life changes that we face as a family, but are so grateful for the outpouring of support from our loved ones. Please keep us in your thoughts and we plan to update regularly through this site.
Mighty Max has half a heart but we love him with all of ours.
After several more tests Max was diagnosed with a single ventricle heart defect. When we heard the news we were devastated. The doctors told us that Max needed to be transferred to a world class hospital to receive life saving surgery. When we arrived at the pediatric cardiac intensive care unit a team of doctors performed a high resolution EKG to learn the specifics of his condition. They confirmed that our baby boy had a heart defect that would kill him in weeks if not treated.
We have been living at Lurie Children's Hospital in Chicago since Max was born. We spend our days and nights by his side cherishing every moment we have with our son. We feel so blessed that he has been given this chance at life.
Max was diagnosed with a double inlet left ventricle (DILV) single ventricle congenital heart defect. Over the past week we have learned everything that we can about this condition. 30 years ago nearly every baby born with this disease died in the first weeks of life and the children that survived often had a miserable life. Today when diagnosed early most children survive and many have a happy healthy childhood.
A Single ventricle defect is when only half of the heart is functional. Max will need at least 3 open heart surgeries in the first 3 years of his life to better adjust his body to working with only half a heart.
When Max was 5 days old the doctors performed the first open heart surgery that will keep him alive for at least 5 months until they can perform the next surgery. Even though the doctors were very confident about his chances, when they took him away we nearly stopped breathing because we were so worried. When it was over, the lead surgeon let us know that everything went as expected and he was optimistic about his recovery. We could finally breathe again.
Over the following night and day they removed one machine after another. 12 hours after his surgery we could hold our son again. While in our arms he opened up his eyes and we knew everything would be alright. Last night we were allowed to bottle feed him. From what the doctors are saying, it seems like we will be able to take our son home in the next few days.
Max will need at least 2 more surgeries where they stop his heart and change the way his blood flows. We haven't even started to think about this as we are living one day at a time.
We have decided to nick name him "Mighty Max" to remind us, as parents, what he as already overcome and to give us the courage in the days ahead. We are very overwhelmed by all of the decisions and life changes that we face as a family, but are so grateful for the outpouring of support from our loved ones. Please keep us in your thoughts and we plan to update regularly through this site.
Mighty Max has half a heart but we love him with all of ours.
Organizer
Lindsay Donovan Keisman
Organizer
Woodstock, IL