Live Like Lennon
Donation protected
Lennon Zachary Jacobo was born on June 8th, 2016. Born at 37 weeks weighing 2 lbs 9 oz. His arrival had been planned for months. The months leading up to June 8th were filled with unanswered questions, specialist after specialist visits and worry. But the dr’s specifically chose this day, the day we met Lennon, the day our lives were forever changed.
As planned Lennon was rushed to the NICU. It was hours before I could see him, days before i was able to change his diaper and weeks before i was able to hold him. Within the first few days new specialist were introduced, some questions answered with some very big decisions to make. It was revealed that Lennon had a rare congenital heart disease called TAPVR and a growth disorder called Russel Silver Syndrome. But now as a family we had something to work toward and that was heart surgery. We had a very sick and very small baby boy that needed to gain weight before his little heart could be fixed. So we celebrated little victories everyday, any weight gain going up and respiratory support going down was a win for us. Some days I would just stare into his incubator in awe and wonder cause touching or holding him could be too stressful for him. There were always ups and downs uncertainties in the months leading to surgery. Some may have thought he wouldn’t make it. We embraced our NICU life and did what we could. The highlight of our day was assisting in bath time during the evening shift. We almost felt like a normal family shampooing his hair, changing his linens, clipping his nails. He enjoyed being read to, listening to frank sinatra calmed him and he’d hold a firm grasp to his favorite toys. In October Lennon was as close as he would get to being ready for surgery. 12 hours of waiting and praying, Lennon recovered gracefully. As much as we’d hope it be easier after this major surgery issues remained. Lennon experienced fevers, infections, pneumonia, strokes, seizures and continued to struggle with growth.
In March of 2017 Lennon experienced major respiratory issues. He would come on and off off breathing machines or breathing tubes, and experienced respiratory failure 3 times. He was baptized in the hospital surrounded by close family at the bedside. But He continued to show us strength and resilience.
In efforts to go home Lennon would now prepare for a tracheotomy and a g-tube surgeries.
April 19th was the last time I saw his beautiful big eyes smile back at us moments before his surgery. His recovery was rough and on April 26th he was called back home.
We had 322 days together and all 322 days were shared at the Christus Santa Rosa Children’s Hospital in
the Neonatal Intensive Care Unit. There we cried, we laughed, we prayed and we loved. NICU nurses assisted us in my first diaper change as a new mom, the first time i held him on my chest and the last time i held him in my arms. During this time we focused on being present and experiencing parenthood in an untraditional environment. And now that he’s gone we continue to honor him by taking what he’s shown us and Living Like Lennon. We wouldn’t have changed one thing about our time with Lennon. We seek to apply for a non profit called Live Like Lennon to assist families with children in the NICU. We’d like to aid families with warm meals, toiletries and things that we struggled with during our stay that we feel could benefit families dealing with an already difficult situation. We hope we can give back and remind people to Live the way Lennon did.
As planned Lennon was rushed to the NICU. It was hours before I could see him, days before i was able to change his diaper and weeks before i was able to hold him. Within the first few days new specialist were introduced, some questions answered with some very big decisions to make. It was revealed that Lennon had a rare congenital heart disease called TAPVR and a growth disorder called Russel Silver Syndrome. But now as a family we had something to work toward and that was heart surgery. We had a very sick and very small baby boy that needed to gain weight before his little heart could be fixed. So we celebrated little victories everyday, any weight gain going up and respiratory support going down was a win for us. Some days I would just stare into his incubator in awe and wonder cause touching or holding him could be too stressful for him. There were always ups and downs uncertainties in the months leading to surgery. Some may have thought he wouldn’t make it. We embraced our NICU life and did what we could. The highlight of our day was assisting in bath time during the evening shift. We almost felt like a normal family shampooing his hair, changing his linens, clipping his nails. He enjoyed being read to, listening to frank sinatra calmed him and he’d hold a firm grasp to his favorite toys. In October Lennon was as close as he would get to being ready for surgery. 12 hours of waiting and praying, Lennon recovered gracefully. As much as we’d hope it be easier after this major surgery issues remained. Lennon experienced fevers, infections, pneumonia, strokes, seizures and continued to struggle with growth.
In March of 2017 Lennon experienced major respiratory issues. He would come on and off off breathing machines or breathing tubes, and experienced respiratory failure 3 times. He was baptized in the hospital surrounded by close family at the bedside. But He continued to show us strength and resilience.
In efforts to go home Lennon would now prepare for a tracheotomy and a g-tube surgeries.
April 19th was the last time I saw his beautiful big eyes smile back at us moments before his surgery. His recovery was rough and on April 26th he was called back home.
We had 322 days together and all 322 days were shared at the Christus Santa Rosa Children’s Hospital in
the Neonatal Intensive Care Unit. There we cried, we laughed, we prayed and we loved. NICU nurses assisted us in my first diaper change as a new mom, the first time i held him on my chest and the last time i held him in my arms. During this time we focused on being present and experiencing parenthood in an untraditional environment. And now that he’s gone we continue to honor him by taking what he’s shown us and Living Like Lennon. We wouldn’t have changed one thing about our time with Lennon. We seek to apply for a non profit called Live Like Lennon to assist families with children in the NICU. We’d like to aid families with warm meals, toiletries and things that we struggled with during our stay that we feel could benefit families dealing with an already difficult situation. We hope we can give back and remind people to Live the way Lennon did.
Organizer
Ina Campos
Organizer
San Antonio, TX
