Elaina’s Liver Transplant Fund
Donation protected
Hi everyone,
We are creating a new campaign for Elaina to help with her ongoing liver transplant expenses. For those that haven’t met Elaina or know her story, we’ll quickly share her journey and why she is on the liver transplant list.
Elaina was born on August 28, 2019 at the Oklahoma Children’s Hospital at 32 weeks of development. Her mom (my wife) was admitted a couple of days before after she began experiencing some preeclampsia complications. The labor and delivery team shared they thought the safest plan for my wife and Elaina would be an emergency c-section. We were both hesitant at first, but little did we know this would turn out much better than we could have ever anticipated.
I mentioned earlier that Elaina was born at 32 weeks and she weighed just two pounds. She was quickly taken to the NICU for care and a watchful eye was kept day and night. The NICU team notified her bilirubin was staying high. This is the kind of bilirubin that UV lights won’t help. It was mentioned that Elaina may have Biliary Atresia. BA is a rare liver disease that only newborns can be born with, and it occurs in 1 out of every 15,000 births each year. There is a surgery that can be done possibly put off the need for a liver transplant but the surgery doesn’t always work. In Elaina’s situation, bring premature actually benefitted her. The operation, called a Kasai Procedure, where the surgeon uses a loop of the baby’s small intestine to replace the damaged bile ducts. If the surgery works, bile will begin to flow from the liver through the small intestine. Normally you know within three months if the surgery was a success or not.
Elaina’s struggled her first year. She had frequent cholangitis infections that required weeks of IV antibiotics, she had an NG tube because of poor weight gain. Many BA babies struggle to absorb the fats the nutrients they need. Elaina’s GI recommended we start looking at getting her a new liver so in July 2020 we went to Texas Children’s Hospital in Houston for a transplant evaluation. If you aren’t familiar with how the process works I’ll walk you through it. It’s normally three to four days of tests. They take a lot of blood, ultrasounds, chest x-rays, physical exams, you meet with psychologists, case managers who discuss financials and insurance, and we met with the transplant surgeon and GI team. After Elaina’s first nutrition appointment she was admitted and it was completely unexpected. They considered her “failure to thrive” which basically means she’s not getting enough food and her body is burning calories so fast that she’s not getting the nutrients she needs. We were sent back home with IV antibiotics, TPN and lipids to help Elaina grow.
The transplant team decided Elaina is the perfect candidate for a liver transplant and was added to the transplant list at the end of July 2020. Once you’re added you are essentially on 24 hour notice. You can get a call at any time, it’s always the most inconvenient time too. October 2020 we received our first call. The jet picked Elaina and my wife up in Ardmore and flew them to Houston where they waited for the donor liver. That offer never came… after phone calls with the surgeons and procurement team, the donors organs began to fail before the procurement team could fly in for surgery. This happened on a Tuesday and Thursday we were sent home. Saturday night we got another offer, same story, Elaina and my wife flew from Ardmore to Houston again to prepare for surgery. This time Elaina was on the operating room table, the new liver was on the back table and the surgeon came in and said this isn’t the perfect liver for Elaina and I’m not accepting anything that’s not perfect.
We are still waiting for that perfect liver. We travel to Houston every three months for appointments with her GI doctor. We also see the GI team at Oklahoma Children’s Hospital monthly. We have been to fortunate to have the caliber of doctors, nurses, surgeons and coordinators to care for Elaina. They said it takes a village and the entire team loves Elaina and how far she has come from being two pounds, to being a feisty two year old.
Donated funds help us with travel to Oklahoma City and Houston, hotel stays, meals, gas, and the occasional hospital bill. We also help other biliary atresia families whose babies are really sick and have either had a transplant, or are very sick and waiting for a transplant. We would really love to continue to grow Elaina’s funds and our goal is to start a charity on behalf of Elaina. This would benefit babies born with liver disease whose parents are beginning their journey with these special babies
We are creating a new campaign for Elaina to help with her ongoing liver transplant expenses. For those that haven’t met Elaina or know her story, we’ll quickly share her journey and why she is on the liver transplant list.
Elaina was born on August 28, 2019 at the Oklahoma Children’s Hospital at 32 weeks of development. Her mom (my wife) was admitted a couple of days before after she began experiencing some preeclampsia complications. The labor and delivery team shared they thought the safest plan for my wife and Elaina would be an emergency c-section. We were both hesitant at first, but little did we know this would turn out much better than we could have ever anticipated.
I mentioned earlier that Elaina was born at 32 weeks and she weighed just two pounds. She was quickly taken to the NICU for care and a watchful eye was kept day and night. The NICU team notified her bilirubin was staying high. This is the kind of bilirubin that UV lights won’t help. It was mentioned that Elaina may have Biliary Atresia. BA is a rare liver disease that only newborns can be born with, and it occurs in 1 out of every 15,000 births each year. There is a surgery that can be done possibly put off the need for a liver transplant but the surgery doesn’t always work. In Elaina’s situation, bring premature actually benefitted her. The operation, called a Kasai Procedure, where the surgeon uses a loop of the baby’s small intestine to replace the damaged bile ducts. If the surgery works, bile will begin to flow from the liver through the small intestine. Normally you know within three months if the surgery was a success or not.
Elaina’s struggled her first year. She had frequent cholangitis infections that required weeks of IV antibiotics, she had an NG tube because of poor weight gain. Many BA babies struggle to absorb the fats the nutrients they need. Elaina’s GI recommended we start looking at getting her a new liver so in July 2020 we went to Texas Children’s Hospital in Houston for a transplant evaluation. If you aren’t familiar with how the process works I’ll walk you through it. It’s normally three to four days of tests. They take a lot of blood, ultrasounds, chest x-rays, physical exams, you meet with psychologists, case managers who discuss financials and insurance, and we met with the transplant surgeon and GI team. After Elaina’s first nutrition appointment she was admitted and it was completely unexpected. They considered her “failure to thrive” which basically means she’s not getting enough food and her body is burning calories so fast that she’s not getting the nutrients she needs. We were sent back home with IV antibiotics, TPN and lipids to help Elaina grow.
The transplant team decided Elaina is the perfect candidate for a liver transplant and was added to the transplant list at the end of July 2020. Once you’re added you are essentially on 24 hour notice. You can get a call at any time, it’s always the most inconvenient time too. October 2020 we received our first call. The jet picked Elaina and my wife up in Ardmore and flew them to Houston where they waited for the donor liver. That offer never came… after phone calls with the surgeons and procurement team, the donors organs began to fail before the procurement team could fly in for surgery. This happened on a Tuesday and Thursday we were sent home. Saturday night we got another offer, same story, Elaina and my wife flew from Ardmore to Houston again to prepare for surgery. This time Elaina was on the operating room table, the new liver was on the back table and the surgeon came in and said this isn’t the perfect liver for Elaina and I’m not accepting anything that’s not perfect.
We are still waiting for that perfect liver. We travel to Houston every three months for appointments with her GI doctor. We also see the GI team at Oklahoma Children’s Hospital monthly. We have been to fortunate to have the caliber of doctors, nurses, surgeons and coordinators to care for Elaina. They said it takes a village and the entire team loves Elaina and how far she has come from being two pounds, to being a feisty two year old.
Donated funds help us with travel to Oklahoma City and Houston, hotel stays, meals, gas, and the occasional hospital bill. We also help other biliary atresia families whose babies are really sick and have either had a transplant, or are very sick and waiting for a transplant. We would really love to continue to grow Elaina’s funds and our goal is to start a charity on behalf of Elaina. This would benefit babies born with liver disease whose parents are beginning their journey with these special babies
Organiser
Cody Reynolds
Organiser
Tishomingo, OK
