Anevay's Home Nurse Coverage
Donation protected
My name is Anevay Eve Jacobs. I thought I would tell
you all a bit about what got me here, My Journey. Well it started when I was 19 weeks old in the womb. Mommy had a special sonogram checkup. During this sonogram the doctor seen that I had a belly wall defect called an Omphalocele. An Omphalocele is a birth defect in which the intestine or other organs are outside of the body cause of a hole in the belly button area, these organs are covered only by a thin layer of tissue. Mommy also found out that I had a Giant Omphalocele that contained my Liver and part of my Small Bowel. Mommy then had to wait until Daddy got home to let him know what the doctor found. Those next couple weeks they had a lot of decisions to make and what this would mean for me. They knew they wanted the best outcome, so mommy and daddy moved our care to Oishei Children's Hospital High
Risk clinic. This is where they met with the different teams that would be caring for me. From that moment on the high-risk clinic team kept a close eye on me with frequent detailed sonogram tests. Fast forward to when I was 37 weeks old, we were in the clinic for a growth check. The doctor found that I had stopped growing in mommy's belly and that it was best for me to come out. We were admitted for a scheduled C-section at 37 weeks and 3 days in the womb. I was delivered at 11am on December 24th! When I came out, l was 5lbs 3oz and l7in long. Which was a big deal cause they couldn't get an accurate weight on me throughout my stay with mommy. I also let out a big cry when I
arrived to let mommy and daddy know that the champ is here. I was then rushed into surgery cause my omphalocele membrane ruptured and they had to dodge infection and install a silo. With the silo they were able to get my small bowel in place. My liver on the other hand wouldn't fit in my belly. My surgeon then decided to take me into
surgery for a repair. He stretched my belly skin as far over the liver as he could then place mesh over any bare areas. Cause of the quickness of repair and not having room in my belly I went into respiratory failure despite my lungs being fully developed. After that the ride started,
A Lot of downs, then ups, then back down again. This would cause me to need a little extra help. So, they equipped me with a Trach, Ventilator and GJ tubes. They also had to send me home with home care nurses. It was a long 5 months and 26 days stay at the hospital. For now, my omphalocele repair is all healed, I just have a round belly (that's my Liver). As I grow the less assistance I'll need, and my belly will go away. This is cause there will be more room in my belly so everything will fit in place. So, the equipment is temporary if I stay healthy and sick free. On a good note I have been home for 8 Months! I am hitting all my milestones just a bit behind physically. But who wouldn't be with an avocado seed belly? l am currently 1 Years old and my journey is far from over. For now I am hanging back being a regular baby growing, learning, playing, eating and pooping. Unfortunately we came to a standstill with our home care coverage due to loss of Medicaid insurance in the beginning of February. We have submitted paperwork but it will take more than 60 days to resolve or take effect. The nurses can't work without pay. I need 24/7 monitoring because I am on a ventilator and respiratory compromised. My daddy has been working as a Buffalo Firefighter for only a couple years and works 24 hour shifts. Mommy and Daddy found out that his insurance won't cover home care. We are looking for help to pay the Nurses so they can continue working until the insurance kicks in. Home care Nurses are hard to come by and we are at risk of losing them all. We have reached the end of our resources and this is our last resort. Mommy and Daddy have to pay out of pocket for my supplies, prescriptions and formula so they are unable to pay the nurses themselves. We appreciate any kind of help, Thank you!
you all a bit about what got me here, My Journey. Well it started when I was 19 weeks old in the womb. Mommy had a special sonogram checkup. During this sonogram the doctor seen that I had a belly wall defect called an Omphalocele. An Omphalocele is a birth defect in which the intestine or other organs are outside of the body cause of a hole in the belly button area, these organs are covered only by a thin layer of tissue. Mommy also found out that I had a Giant Omphalocele that contained my Liver and part of my Small Bowel. Mommy then had to wait until Daddy got home to let him know what the doctor found. Those next couple weeks they had a lot of decisions to make and what this would mean for me. They knew they wanted the best outcome, so mommy and daddy moved our care to Oishei Children's Hospital High
Risk clinic. This is where they met with the different teams that would be caring for me. From that moment on the high-risk clinic team kept a close eye on me with frequent detailed sonogram tests. Fast forward to when I was 37 weeks old, we were in the clinic for a growth check. The doctor found that I had stopped growing in mommy's belly and that it was best for me to come out. We were admitted for a scheduled C-section at 37 weeks and 3 days in the womb. I was delivered at 11am on December 24th! When I came out, l was 5lbs 3oz and l7in long. Which was a big deal cause they couldn't get an accurate weight on me throughout my stay with mommy. I also let out a big cry when I
arrived to let mommy and daddy know that the champ is here. I was then rushed into surgery cause my omphalocele membrane ruptured and they had to dodge infection and install a silo. With the silo they were able to get my small bowel in place. My liver on the other hand wouldn't fit in my belly. My surgeon then decided to take me into
surgery for a repair. He stretched my belly skin as far over the liver as he could then place mesh over any bare areas. Cause of the quickness of repair and not having room in my belly I went into respiratory failure despite my lungs being fully developed. After that the ride started,
A Lot of downs, then ups, then back down again. This would cause me to need a little extra help. So, they equipped me with a Trach, Ventilator and GJ tubes. They also had to send me home with home care nurses. It was a long 5 months and 26 days stay at the hospital. For now, my omphalocele repair is all healed, I just have a round belly (that's my Liver). As I grow the less assistance I'll need, and my belly will go away. This is cause there will be more room in my belly so everything will fit in place. So, the equipment is temporary if I stay healthy and sick free. On a good note I have been home for 8 Months! I am hitting all my milestones just a bit behind physically. But who wouldn't be with an avocado seed belly? l am currently 1 Years old and my journey is far from over. For now I am hanging back being a regular baby growing, learning, playing, eating and pooping. Unfortunately we came to a standstill with our home care coverage due to loss of Medicaid insurance in the beginning of February. We have submitted paperwork but it will take more than 60 days to resolve or take effect. The nurses can't work without pay. I need 24/7 monitoring because I am on a ventilator and respiratory compromised. My daddy has been working as a Buffalo Firefighter for only a couple years and works 24 hour shifts. Mommy and Daddy found out that his insurance won't cover home care. We are looking for help to pay the Nurses so they can continue working until the insurance kicks in. Home care Nurses are hard to come by and we are at risk of losing them all. We have reached the end of our resources and this is our last resort. Mommy and Daddy have to pay out of pocket for my supplies, prescriptions and formula so they are unable to pay the nurses themselves. We appreciate any kind of help, Thank you!
Organizer
Kurt Jacobs
Organizer
Buffalo, NY
