Half a heart, twice the fight!! ❤️❤️
Donation protected
06/24/2023 Update: (Hypoplastic Right Heart Syndrome)
Koa will be having his open heart surgery at St. Mary Brigh’s on Mayo Campus at Rochester tentatively now sometime in August.
Koa was flown out to Mayo about two weeks ago. His mommy noticed his arms and legs were purple. 911 was called and when they got him to the ER, he was mottling. He was given oxygen. A normal oxygen level for him is between 75-85, but that night, it was dipping in the low 60’s.
When he was flown out to Mayo, he was bottle feeding just fine, but while at Mayo, he stopped eating like he used to. Whatever he doesn’t eat, he has to be tube fed. He’s been home for a week now, and he is still mostly being tube fed. He saw a Mayo cardiologist this past Monday, and he said baby is doing good, but it’s been about two weeks for the feeding tube now. Maybe bottle feeding just makes him so tired.
He has been clammy and sleeping a lot, but the doctors at Mayo said they aren’t concerned about that. He will be seen again on Monday but just in Devils Lake. He has also been gaining weight, so everyone is happy about that!!
He loves being carried and walked.
I’m asking if people can help my daughter. She has been out of work for the most part since March. She works maybe 1-3 days a week, but often has to come home. It’s like he knows that she isn’t there and cries until she comes home.
She doesn’t like to ask for help, so as her mother, I am asking for her because she truly needs the help.
Thank you so much!!! Even if u can’t help financially, please share and say some prayers for my precious grandson. ❤️
: The prayers are truly working and as the surgeon was talking, an eagle was flying over us!!!!!!!!!!! ❤️Well. The surgeon told us that the whole team of people that had conferences all day yesterday, lastnight, and again this morning. They’be come to the decision NOT to do open chest heart surgery because it could cause baby a heart attack, and they would have to leave his chest open for two days. Today, he’s going into the cath lab again, and they are going to put another stent in. They decided not do a shunt. They said they are going to take the other stent out, and put another one in, but if the other one doesn’t come out, it’s ok. But…….he needs a heart transplant. They are going to put him on the transplant list today. Baby will be in the hospital until then. We have a long road ahead, but idc how long we have to stay, as long as baby is good. I told Bailee, once he is stable, I will go back and forth with the other kids so she can see them. Our baby has a big purpose in this world. He’s already contributing to medical science, since this has never happened before, he’s putting their brains to work for others that this may happen to. I wish he didn’t have to, but I truly believe he is a gift to the world…….especially medical science, and the best hospital in the world because they are learning from him. He is their teacher-they are learning new things from him. He is living up to his name: Koa, which means Warrior. Please keep praying for him………especially as he goes in today. Thank u all soooooo much!!!! We appreciate every single one of u from the bottom of our hearts. ❤️❤️❤️❤️❤️❤️❤️❤️
Update: Our sweet little baby boy, Koa, was born on 03/25/2023 @ 11:14am. He weighed 8lbs 8oz and he is 21.5 inches long. He has a long road ahead. He had a heart procedure on 03/28/2023 at Mayo, but the procedure did not go as planned. Now, he will have open-chest heart surgery on 03/30/2023 at just 5 days old. Please please please keep him in your prayers for a successful surgery.
We are in need of financial help to bring our little baby boy on his journey into the world, and to help him to have life-saving heart surgery (possibility) as soon as he is born.
My name is Tracy Charboneau, and I am baby boy's grandma. I am searching for resources to assist baby boy's mom, my daughter “Bailee”, who is also the mom of my two other grandchildren, Jacob (8 yrs) and Octavia (2 yrs). Our little baby boy was diagnosed with a very serious heart condition that was seen on his 5-month ultrasound. We have been overwhelmed with worry since we found out from the medical specialist that baby boy has an extremely RARE heart condition. The condition is called “hypoplastic right heart syndrome”, which means that the right side of baby boy's heart is mostly missing. This is so rare that it occurs in ONLY 1 OUT OF 60,000 BABIES! And these little babies need immediate care at a very specialized medical facility that have doctors who have the skills to help our baby boy. Bailee and I will need to relocate to Rochester, MN for 3-4 weeks before baby boy is born, so he can be near the specialized care at the Mayo Clinic Hospital for any late pregnancy complications and the doctor is requiring him to be born at Mayo. Sadly, the pre-natal specialist doctor also had to tell us that sometimes babies with this heart condition are born “sleeping” (stillborn). We need to know that could happen, and we are asking for many prayers for him. The pre-natal specialist doctor has also told Bailee that baby boy will possibly require open heart surgery within days of being born. And at 3-4 months of age, baby boy will have to have another open heart surgery, and possibly again at 3-4 years, and possibly even need a heart transplant. The Mayo Clinic Hospital has expert medical and surgical specialists who will work as a team to save baby boy's life, and to follow up with him for the months ahead. We are SO grateful he can be a patient there. As a Grandma, I am so worried right now for my grandson and my daughter. I also have been a nurse for over 12 years, and I understand that baby boy will be needing intensive care and very lengthy follow-up care after his birth. We were made aware that we may even have to live in Rochester, MN for months after baby boy is born so he can receive the ongoing specialized medical care he will have to have. I am humbly posting this “Go Fund Me” request, as I know we are not able to manage the transportation, monthly bills due to missed work and housing costs that will be required to make our multiple trips from the Spirit Lake reservation to the Mayo Clinic both before baby boy's birth and after his birth. The drive is approximately 9 hours from our home in ND to Rochester, MN. I work full-time and Bailee works full time. We know we will have to take unpaid leave from our jobs. However, we also take care of our families and elder relatives, so we do not have a lot of “extra” cash resources that will be available to get us through this time. I am dedicated to getting my daughter, Bailee, and my pre-born grandson, the care that will be needed for an extended period of time. So, that is why I am asking for your help for my daughter and little grandson who will be born in late March. Bailee will also need help to keep up with her regular monthly bills, as she will possibly be out of work for an extended period of time, and she is the sole provider of her little family, as well as make sure her other children are ok at home while she is away. We are very worried about baby boy, and we know the seriousness of this rare condition. We would be very appreciative of your prayers and of any financial assistance you may be able help us with through this time. Thank you. We have an appointment in early January, and hopefully, we will know more then and will share what we find out. May God bless you all! Thank you in advance for any help! UPDATE: We went to appointments In Rochester last week. His heart has not grown at all. The rest of his body is growing. We pretty much got the same news, except something new added, but not a definite diagnosis, so we’ll wait until we know for sure because we don’t believe it anyway. The cardiologist let us know that baby will be born “purple” as his oxygen levels will be really low. They will start infusing him with prostaglandin, and when he’s between 4-5 days old, he will have his first surgery. The doctor in Fargo thot he maybe wouldn’t have to have the first surgery that early, but as it turns out, right now, he does. Then another surgery between 3-6 months, then 2-4 years. I think he’s going to be a big boy! He was 2lbs 11oz at the appointment. Bailee will have to be induced because his due date is on a Friday, and they want him to be born during the week, when everyone is available…… She will start having weekly ultrasounds to make sure that he is growing and everything is good. We want to thank everyone with all our hearts who have donated and sent prayers!!!!!! I told the cardiologist that we believe in miracles and we are believing that his heart is going to be growing before he is born and he won’t have to go through all that stuff.
Koa will be having his open heart surgery at St. Mary Brigh’s on Mayo Campus at Rochester tentatively now sometime in August.
Koa was flown out to Mayo about two weeks ago. His mommy noticed his arms and legs were purple. 911 was called and when they got him to the ER, he was mottling. He was given oxygen. A normal oxygen level for him is between 75-85, but that night, it was dipping in the low 60’s.
When he was flown out to Mayo, he was bottle feeding just fine, but while at Mayo, he stopped eating like he used to. Whatever he doesn’t eat, he has to be tube fed. He’s been home for a week now, and he is still mostly being tube fed. He saw a Mayo cardiologist this past Monday, and he said baby is doing good, but it’s been about two weeks for the feeding tube now. Maybe bottle feeding just makes him so tired.
He has been clammy and sleeping a lot, but the doctors at Mayo said they aren’t concerned about that. He will be seen again on Monday but just in Devils Lake. He has also been gaining weight, so everyone is happy about that!!
He loves being carried and walked.
I’m asking if people can help my daughter. She has been out of work for the most part since March. She works maybe 1-3 days a week, but often has to come home. It’s like he knows that she isn’t there and cries until she comes home.
She doesn’t like to ask for help, so as her mother, I am asking for her because she truly needs the help.
Thank you so much!!! Even if u can’t help financially, please share and say some prayers for my precious grandson. ❤️
: The prayers are truly working and as the surgeon was talking, an eagle was flying over us!!!!!!!!!!! ❤️Well. The surgeon told us that the whole team of people that had conferences all day yesterday, lastnight, and again this morning. They’be come to the decision NOT to do open chest heart surgery because it could cause baby a heart attack, and they would have to leave his chest open for two days. Today, he’s going into the cath lab again, and they are going to put another stent in. They decided not do a shunt. They said they are going to take the other stent out, and put another one in, but if the other one doesn’t come out, it’s ok. But…….he needs a heart transplant. They are going to put him on the transplant list today. Baby will be in the hospital until then. We have a long road ahead, but idc how long we have to stay, as long as baby is good. I told Bailee, once he is stable, I will go back and forth with the other kids so she can see them. Our baby has a big purpose in this world. He’s already contributing to medical science, since this has never happened before, he’s putting their brains to work for others that this may happen to. I wish he didn’t have to, but I truly believe he is a gift to the world…….especially medical science, and the best hospital in the world because they are learning from him. He is their teacher-they are learning new things from him. He is living up to his name: Koa, which means Warrior. Please keep praying for him………especially as he goes in today. Thank u all soooooo much!!!! We appreciate every single one of u from the bottom of our hearts. ❤️❤️❤️❤️❤️❤️❤️❤️
Update: Our sweet little baby boy, Koa, was born on 03/25/2023 @ 11:14am. He weighed 8lbs 8oz and he is 21.5 inches long. He has a long road ahead. He had a heart procedure on 03/28/2023 at Mayo, but the procedure did not go as planned. Now, he will have open-chest heart surgery on 03/30/2023 at just 5 days old. Please please please keep him in your prayers for a successful surgery.
We are in need of financial help to bring our little baby boy on his journey into the world, and to help him to have life-saving heart surgery (possibility) as soon as he is born.
My name is Tracy Charboneau, and I am baby boy's grandma. I am searching for resources to assist baby boy's mom, my daughter “Bailee”, who is also the mom of my two other grandchildren, Jacob (8 yrs) and Octavia (2 yrs). Our little baby boy was diagnosed with a very serious heart condition that was seen on his 5-month ultrasound. We have been overwhelmed with worry since we found out from the medical specialist that baby boy has an extremely RARE heart condition. The condition is called “hypoplastic right heart syndrome”, which means that the right side of baby boy's heart is mostly missing. This is so rare that it occurs in ONLY 1 OUT OF 60,000 BABIES! And these little babies need immediate care at a very specialized medical facility that have doctors who have the skills to help our baby boy. Bailee and I will need to relocate to Rochester, MN for 3-4 weeks before baby boy is born, so he can be near the specialized care at the Mayo Clinic Hospital for any late pregnancy complications and the doctor is requiring him to be born at Mayo. Sadly, the pre-natal specialist doctor also had to tell us that sometimes babies with this heart condition are born “sleeping” (stillborn). We need to know that could happen, and we are asking for many prayers for him. The pre-natal specialist doctor has also told Bailee that baby boy will possibly require open heart surgery within days of being born. And at 3-4 months of age, baby boy will have to have another open heart surgery, and possibly again at 3-4 years, and possibly even need a heart transplant. The Mayo Clinic Hospital has expert medical and surgical specialists who will work as a team to save baby boy's life, and to follow up with him for the months ahead. We are SO grateful he can be a patient there. As a Grandma, I am so worried right now for my grandson and my daughter. I also have been a nurse for over 12 years, and I understand that baby boy will be needing intensive care and very lengthy follow-up care after his birth. We were made aware that we may even have to live in Rochester, MN for months after baby boy is born so he can receive the ongoing specialized medical care he will have to have. I am humbly posting this “Go Fund Me” request, as I know we are not able to manage the transportation, monthly bills due to missed work and housing costs that will be required to make our multiple trips from the Spirit Lake reservation to the Mayo Clinic both before baby boy's birth and after his birth. The drive is approximately 9 hours from our home in ND to Rochester, MN. I work full-time and Bailee works full time. We know we will have to take unpaid leave from our jobs. However, we also take care of our families and elder relatives, so we do not have a lot of “extra” cash resources that will be available to get us through this time. I am dedicated to getting my daughter, Bailee, and my pre-born grandson, the care that will be needed for an extended period of time. So, that is why I am asking for your help for my daughter and little grandson who will be born in late March. Bailee will also need help to keep up with her regular monthly bills, as she will possibly be out of work for an extended period of time, and she is the sole provider of her little family, as well as make sure her other children are ok at home while she is away. We are very worried about baby boy, and we know the seriousness of this rare condition. We would be very appreciative of your prayers and of any financial assistance you may be able help us with through this time. Thank you. We have an appointment in early January, and hopefully, we will know more then and will share what we find out. May God bless you all! Thank you in advance for any help! UPDATE: We went to appointments In Rochester last week. His heart has not grown at all. The rest of his body is growing. We pretty much got the same news, except something new added, but not a definite diagnosis, so we’ll wait until we know for sure because we don’t believe it anyway. The cardiologist let us know that baby will be born “purple” as his oxygen levels will be really low. They will start infusing him with prostaglandin, and when he’s between 4-5 days old, he will have his first surgery. The doctor in Fargo thot he maybe wouldn’t have to have the first surgery that early, but as it turns out, right now, he does. Then another surgery between 3-6 months, then 2-4 years. I think he’s going to be a big boy! He was 2lbs 11oz at the appointment. Bailee will have to be induced because his due date is on a Friday, and they want him to be born during the week, when everyone is available…… She will start having weekly ultrasounds to make sure that he is growing and everything is good. We want to thank everyone with all our hearts who have donated and sent prayers!!!!!! I told the cardiologist that we believe in miracles and we are believing that his heart is going to be growing before he is born and he won’t have to go through all that stuff.
Organiser and beneficiary
Tracy Charboneau
Organiser
Fort Totten, ND
Bailee Longie
Beneficiary