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Zeno FamilyAmaya, Addison, Ethan, Noah, Clayton & Briana
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Noah's Story
We have 4 children, our two oldest are girls (ages 12 and 8), and our two youngest are boys (ages 5 and 16 months). Noah is our youngest, and he is the one who was diagnosed with dilated cardiomyopathy. He was born by emergency cesarean at 36 weeks due to me having severe pre-eclampsia. He spent 8 days in the NICU, and needed some breathing support, but was otherwise healthy. He came home doing well and feeding as well as breathing on his own.
Then, when he was about 2 months old, he started having problems eating. He would have trouble tiring out and breathing while he was drinking his bottle. We thought he had reflux or something. He had retractions and was making weird whistling noises. We took him to the doctor and she told us to go to the ER, so we did. They did an X-Ray and discovered that the left side of his heart was very enlarged. He was admitted to the cardiac ICU at Children's in Dallas and we stayed there about a month. His ejection fracture was very low, but he was still able to feed on his own and was active and looked great physically in spite of his ECHO looking horrible. We did a transplant evaluation, but ultimately they determined that he looked so healthy otherwise, that they'd allow us to manage at home with medications. He was diagnosed with Dilated Cardiomyopathy as a result of rhinovirus, which was shocking because we did not even know that was possible, and he also never had any cold symptoms! Anyway, we came home and he was doing ok for a few months on medications and cardiology supervision.
However, that all changed in October 2018. He began having the same feeding and breathing problems, and he was admitted back to the hospital. His heart failure was even worse and they said his heart would give out because it just was having to work too hard for his body. He was given an LVAD, and we were placed on the transplant list. Then, November 23rd, we got the call that a heart was found for him! So we did the transplant, but he had complications after that. His heart would not start correctly, so he was placed on ECMO. It was so scary and heartbreaking. We did not know if he would make it, but after some time, he was taken off of it and began to wake up. However, he was still intubated. His left lung collapsed because the heart they had given him was too big. It was for a toddler, and he was only 7 months old. So, he had 2 surgeries to try to correct the problem, but his lung would not stay open. After being intubated for over a month, they informed me that would need to trach him. I was devastated to get bad news once again, but we went ahead with the surgery to put in the trach and the g-button in January.
Not long after he recovered from his trach surgery, we were transferred to Our Children's House where we got him stabilized and I learned how to take care of him. We stayed there until March, which means that he has spent a total of about 6 months in the hospital. Now, it has been about 7 months that he has had his trach and vent. We have home health nursing and he is doing a lot better. We still have quite a ways to go, but we are so grateful that he is getting better. He does speech, occupational and physical therapy. He is learning to eat and can sit up and play now as well.
Bri Zeno
Then, when he was about 2 months old, he started having problems eating. He would have trouble tiring out and breathing while he was drinking his bottle. We thought he had reflux or something. He had retractions and was making weird whistling noises. We took him to the doctor and she told us to go to the ER, so we did. They did an X-Ray and discovered that the left side of his heart was very enlarged. He was admitted to the cardiac ICU at Children's in Dallas and we stayed there about a month. His ejection fracture was very low, but he was still able to feed on his own and was active and looked great physically in spite of his ECHO looking horrible. We did a transplant evaluation, but ultimately they determined that he looked so healthy otherwise, that they'd allow us to manage at home with medications. He was diagnosed with Dilated Cardiomyopathy as a result of rhinovirus, which was shocking because we did not even know that was possible, and he also never had any cold symptoms! Anyway, we came home and he was doing ok for a few months on medications and cardiology supervision.
However, that all changed in October 2018. He began having the same feeding and breathing problems, and he was admitted back to the hospital. His heart failure was even worse and they said his heart would give out because it just was having to work too hard for his body. He was given an LVAD, and we were placed on the transplant list. Then, November 23rd, we got the call that a heart was found for him! So we did the transplant, but he had complications after that. His heart would not start correctly, so he was placed on ECMO. It was so scary and heartbreaking. We did not know if he would make it, but after some time, he was taken off of it and began to wake up. However, he was still intubated. His left lung collapsed because the heart they had given him was too big. It was for a toddler, and he was only 7 months old. So, he had 2 surgeries to try to correct the problem, but his lung would not stay open. After being intubated for over a month, they informed me that would need to trach him. I was devastated to get bad news once again, but we went ahead with the surgery to put in the trach and the g-button in January.
Not long after he recovered from his trach surgery, we were transferred to Our Children's House where we got him stabilized and I learned how to take care of him. We stayed there until March, which means that he has spent a total of about 6 months in the hospital. Now, it has been about 7 months that he has had his trach and vent. We have home health nursing and he is doing a lot better. We still have quite a ways to go, but we are so grateful that he is getting better. He does speech, occupational and physical therapy. He is learning to eat and can sit up and play now as well.
Bri Zeno
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We will grieve Casen’s loss for a lifetime. There is no moving on or getting over it...there is no fix or solution to our heartache. For as long as we breath, we will grieve and ache and love our son with all our heart and soul. But we also trust in His plan and know that He has a purpose for Casen’s life. The Zeno family, from McKinney Texas, is the latest family we have been able to meet and help out thanks to the amazing support Casen’s Crew receives year after year.
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