Ethan Joseph-Dale Mauro Transplant
Donation protected
It has been a little over a year and we are coming up quick on time for Ethan to get his Kidney Transplant. We have to raise nearly $5000 to pay for his transplant and we are asking for your help.
Many of you know Ethan's Story already but if not here it is:
I created this page to help bring awareness to Kidney Disease and organ donation. Along with sharing my families story so that we will be able to get prayers for our son Ethan who is currently going through renal failure. I am hoping that with the power of prayer that Ethan will be able to make it to get a kidney transplant and that we will be able to find a donor for Ethan.
This is our story. It begins when we found out that we were expecting another child. On 3-19-13 we found out that GOD had blessed us with another child. We were so excited. Our two year old son Lucas at the time didn't quite understand what was going on, but he still seemed to be excited about it. When we were 10 ½ weeks along all three of us got to hear that hart beat for the first time. It was the best sound we had heard. When we were 12 weeks we got our first trimester screen done. This is a mix of an ultrasound and blood test that checks for a few abnormalities like the possibility for down syndrome. At that appointment we had no idea that something was wrong with Ethan. Then at 18 ½ weeks we had our anatomy scan. We were all so excited to find out that we were having another boy. Lucas was so excited to be having a little brother. After that appointment my OBGYN told me that our son had a dilated kidney and that it usually resolves itself on its own by birth, but to be on the safe side she wanted to send us to a maternal fetal medicine doctor so that they can give us a better idea of what was going on with his kidney. That was the beginning of the bad news.
On 7-31-13 we went to our first apt with the maternal fetal medicine doctors. We were 24 ½ weeks along at this appointment. We couldn't believe the things the doctor told us. Our would felt like it was crashing down around us but we knew that we had to stay strong for our Ethan and for Lucas. At this appointment they had told us that Ethan wasn’t as healthy as we had thought. They said that there were some things that they knew and a few things that they were unsure of. What they knew for sure was that Ethan’s kidney was dilated and holding urine. What they were unsure of was that he only had one kidney and that he didn’t have a bladder, and that it could be a chromosome abnormality so we should do amniocenteses. At this point in our pregnancy the amniotic fluid was low it was a 5/10, they asked us if we wanted to terminate the pregnancy. We said no knowing that GOD gave us this baby for a reason, and that we wanted to keep him for as long as possible. If that was only while in utero we were fine with that. At that appointment my husband told me that he wanted to do everything that we could possibly do to give Ethan the life that he deserved, the life that God wanted him to have.
Two weeks later when we were 22 weeks along we went for a follow up and to find out the results of the amniocenteses. The doctor told us that the amniocenteses came back and everything looks normal. We were so relieved with this news. . At this appointment we received even more devastating news hat our son’s one functioning kidney was beginning to decrease in function, and was full of cysts. Along with that our amniotic fluid had gone down to 4. We couldn’t believe what we were being told. All we kept talking about was that he needs that fluid for his lungs to develop. The doctor at this apt was extremely worried about his outcome of life and sent us OHSU. All we wanted to know was what Ethan’s chances were at surviving birth. We couldn’t believe that our son may die.
On 8-13-13 we meet with the specialists at maternal fetal medicine at OHSU were they told us that Ethan dose have a good chance of surviving but that all depends on the lungs developing. At this visit our amniotic fluid had gone up to a 5 we were so excited. We thanked God for increasing that fluid and giving Ethan a chance. And also that his chest circumference was 13.5cm (11%ile) That Friday we had an MRI to get even better pictures of what was going on with Ethan. At that apt the dr. told us that it looked like the amniotic fluid had decreased and that his kidney might have ruptured and that his lungs went developing enough to with stand life. We couldn’t believe it that was the most devastating news that we had heard so fare threw this journey.
On 9-2-13 we meet with the nephrologist who gave us some really good news. He said that Ethan's kidney may work when he is born and he may not need dialysis. I couldn't believe it when he told us. I had to have him repeat it. I am so excited. Then the nephrologist told us that Ethan needs to be 3-4lbs at birth to be able to do the dialysis if he needs it. After that we started going to the MFM doctor every two weeks. On 9/16/13 at 27 weeks Ethan weighed in at 2lb 4oz which is in the 53%ile for his gestational age. AFI 0.8cm chest circumference 11%ile.On 9/30/13 at 29 weeks Ethan weighed in at 3lb 5ox (64%ile) Right were we wanted him so that if he came early he could get the dialysis. AFI 6mm, chest circumference 20.5cm (39%ile). Chest was growing which was a great thing. Maybe his lungs may possibly function at birth which we are hoping for. On10/16/13 at 31 weeks Ethan weighed in at 4 lb. AFI 0. BPP=6/8. When the doctor told us that my fluid was completely gone my heart dropped. That means that Ethan's lungs may not develop enough for him to survive. On 10/28/13 at 33 week. Ethan Passed his Biophysical Profile with a 6/8. But his chest hasn't been growing. It was measuring at 21cm (2%ile). But I received two injections of steroids to help develop his lungs. I hope that helps him. I want to give him every chance that he can have. On 11/4/13 we had our oxygenation study. A study that only 35 other women have had. The study consisted of a 3 hr ultrasound because my little man wouldn't stop moving. He had the hickups also. So the dr. had a hard time finding the artery he needed. But eventually he was able to find it and I had to wear an oxygen mask for an hr. Was a little different but we are so excited for the results. They told us that Ethan did great with the oxygen study and that he has a 70% chance at survival. We are so proud of our little fighter.
Ethan was born Dec. 3, 2013 @ 38 weeks gestation. He was put on a ventilator right after birth to help with his lungs. At two days old he had surgery to place his dialysis catheter. At 6 days they started to feed him breast milk threw his feeding tube. Then at 1 week old they placed a new central line in his head. On 12/12/13 Ethan was taken off the vent and is breathing on his own. On 1/10/14 Ethan has surgery for his G tube. Which went great and they were able to use that and his pd cath. two days after his surgery. On 1/20/14 Ethan was released from the hospital to come home. We were all so excited. We got his room and everything ready for him to have home dialysis. But on 1/23/14 we had to be admitted to the hospital because Ethan's potassium was dangerously high. But lucky for us the doctors were able to get the potassium down and he was released on 1/25/13. On 2/14/14 We had to take Ethan to the Emergency room at OHSU because while he was draining during dialysis he was draining blood. We were really worried that he might have an infection or that his umbilical hernia might have ruptured. But there was no infection or rupture; the doctors think that the catheter might have caused an artery to bleed. But we were sent home and didn’t have to be admitted. When we got home all of the bleeding had stopped.
On 2/21/14 we had the scare of our life. After spending the day doing a little shopping we came home and Ethan was acting not like himself. He started to breathe funny and turn blue. We called 911 and they rushed Ethan to the nearest hospital where they stabilized him and put him on a vent. They then transported him to Dornbechers Children’s Hospital where they tried to figure out what had happened to him. They are still unsure of what happened, but they believe that he had to much fluid and that he had high potassium which made his blood pressure go up and made him have to work harder to breath. After this episode we now see his nephrologists every week and he is still struggling with high potassium and high blood pressure. But the doctors are thinking that with him not making any urine out put that we are going to have a long struggle trying to keep everything balanced.
We know that GOD blessed us with Ethan for a reason, and we know that he doesn't give us more then we can handle. We also believe that each day we get to spend with Ethan is a blessing and that seeing him smile and giggle makes all the struggles worth it.
Thank you all for following our story, for showing your support, and for donating. All we ask for is prayers cause we know that is the most valuable thing you can do.
Many of you know Ethan's Story already but if not here it is:
I created this page to help bring awareness to Kidney Disease and organ donation. Along with sharing my families story so that we will be able to get prayers for our son Ethan who is currently going through renal failure. I am hoping that with the power of prayer that Ethan will be able to make it to get a kidney transplant and that we will be able to find a donor for Ethan.
This is our story. It begins when we found out that we were expecting another child. On 3-19-13 we found out that GOD had blessed us with another child. We were so excited. Our two year old son Lucas at the time didn't quite understand what was going on, but he still seemed to be excited about it. When we were 10 ½ weeks along all three of us got to hear that hart beat for the first time. It was the best sound we had heard. When we were 12 weeks we got our first trimester screen done. This is a mix of an ultrasound and blood test that checks for a few abnormalities like the possibility for down syndrome. At that appointment we had no idea that something was wrong with Ethan. Then at 18 ½ weeks we had our anatomy scan. We were all so excited to find out that we were having another boy. Lucas was so excited to be having a little brother. After that appointment my OBGYN told me that our son had a dilated kidney and that it usually resolves itself on its own by birth, but to be on the safe side she wanted to send us to a maternal fetal medicine doctor so that they can give us a better idea of what was going on with his kidney. That was the beginning of the bad news.
On 7-31-13 we went to our first apt with the maternal fetal medicine doctors. We were 24 ½ weeks along at this appointment. We couldn't believe the things the doctor told us. Our would felt like it was crashing down around us but we knew that we had to stay strong for our Ethan and for Lucas. At this appointment they had told us that Ethan wasn’t as healthy as we had thought. They said that there were some things that they knew and a few things that they were unsure of. What they knew for sure was that Ethan’s kidney was dilated and holding urine. What they were unsure of was that he only had one kidney and that he didn’t have a bladder, and that it could be a chromosome abnormality so we should do amniocenteses. At this point in our pregnancy the amniotic fluid was low it was a 5/10, they asked us if we wanted to terminate the pregnancy. We said no knowing that GOD gave us this baby for a reason, and that we wanted to keep him for as long as possible. If that was only while in utero we were fine with that. At that appointment my husband told me that he wanted to do everything that we could possibly do to give Ethan the life that he deserved, the life that God wanted him to have.
Two weeks later when we were 22 weeks along we went for a follow up and to find out the results of the amniocenteses. The doctor told us that the amniocenteses came back and everything looks normal. We were so relieved with this news. . At this appointment we received even more devastating news hat our son’s one functioning kidney was beginning to decrease in function, and was full of cysts. Along with that our amniotic fluid had gone down to 4. We couldn’t believe what we were being told. All we kept talking about was that he needs that fluid for his lungs to develop. The doctor at this apt was extremely worried about his outcome of life and sent us OHSU. All we wanted to know was what Ethan’s chances were at surviving birth. We couldn’t believe that our son may die.
On 8-13-13 we meet with the specialists at maternal fetal medicine at OHSU were they told us that Ethan dose have a good chance of surviving but that all depends on the lungs developing. At this visit our amniotic fluid had gone up to a 5 we were so excited. We thanked God for increasing that fluid and giving Ethan a chance. And also that his chest circumference was 13.5cm (11%ile) That Friday we had an MRI to get even better pictures of what was going on with Ethan. At that apt the dr. told us that it looked like the amniotic fluid had decreased and that his kidney might have ruptured and that his lungs went developing enough to with stand life. We couldn’t believe it that was the most devastating news that we had heard so fare threw this journey.
On 9-2-13 we meet with the nephrologist who gave us some really good news. He said that Ethan's kidney may work when he is born and he may not need dialysis. I couldn't believe it when he told us. I had to have him repeat it. I am so excited. Then the nephrologist told us that Ethan needs to be 3-4lbs at birth to be able to do the dialysis if he needs it. After that we started going to the MFM doctor every two weeks. On 9/16/13 at 27 weeks Ethan weighed in at 2lb 4oz which is in the 53%ile for his gestational age. AFI 0.8cm chest circumference 11%ile.On 9/30/13 at 29 weeks Ethan weighed in at 3lb 5ox (64%ile) Right were we wanted him so that if he came early he could get the dialysis. AFI 6mm, chest circumference 20.5cm (39%ile). Chest was growing which was a great thing. Maybe his lungs may possibly function at birth which we are hoping for. On10/16/13 at 31 weeks Ethan weighed in at 4 lb. AFI 0. BPP=6/8. When the doctor told us that my fluid was completely gone my heart dropped. That means that Ethan's lungs may not develop enough for him to survive. On 10/28/13 at 33 week. Ethan Passed his Biophysical Profile with a 6/8. But his chest hasn't been growing. It was measuring at 21cm (2%ile). But I received two injections of steroids to help develop his lungs. I hope that helps him. I want to give him every chance that he can have. On 11/4/13 we had our oxygenation study. A study that only 35 other women have had. The study consisted of a 3 hr ultrasound because my little man wouldn't stop moving. He had the hickups also. So the dr. had a hard time finding the artery he needed. But eventually he was able to find it and I had to wear an oxygen mask for an hr. Was a little different but we are so excited for the results. They told us that Ethan did great with the oxygen study and that he has a 70% chance at survival. We are so proud of our little fighter.
Ethan was born Dec. 3, 2013 @ 38 weeks gestation. He was put on a ventilator right after birth to help with his lungs. At two days old he had surgery to place his dialysis catheter. At 6 days they started to feed him breast milk threw his feeding tube. Then at 1 week old they placed a new central line in his head. On 12/12/13 Ethan was taken off the vent and is breathing on his own. On 1/10/14 Ethan has surgery for his G tube. Which went great and they were able to use that and his pd cath. two days after his surgery. On 1/20/14 Ethan was released from the hospital to come home. We were all so excited. We got his room and everything ready for him to have home dialysis. But on 1/23/14 we had to be admitted to the hospital because Ethan's potassium was dangerously high. But lucky for us the doctors were able to get the potassium down and he was released on 1/25/13. On 2/14/14 We had to take Ethan to the Emergency room at OHSU because while he was draining during dialysis he was draining blood. We were really worried that he might have an infection or that his umbilical hernia might have ruptured. But there was no infection or rupture; the doctors think that the catheter might have caused an artery to bleed. But we were sent home and didn’t have to be admitted. When we got home all of the bleeding had stopped.
On 2/21/14 we had the scare of our life. After spending the day doing a little shopping we came home and Ethan was acting not like himself. He started to breathe funny and turn blue. We called 911 and they rushed Ethan to the nearest hospital where they stabilized him and put him on a vent. They then transported him to Dornbechers Children’s Hospital where they tried to figure out what had happened to him. They are still unsure of what happened, but they believe that he had to much fluid and that he had high potassium which made his blood pressure go up and made him have to work harder to breath. After this episode we now see his nephrologists every week and he is still struggling with high potassium and high blood pressure. But the doctors are thinking that with him not making any urine out put that we are going to have a long struggle trying to keep everything balanced.
We know that GOD blessed us with Ethan for a reason, and we know that he doesn't give us more then we can handle. We also believe that each day we get to spend with Ethan is a blessing and that seeing him smile and giggle makes all the struggles worth it.
Thank you all for following our story, for showing your support, and for donating. All we ask for is prayers cause we know that is the most valuable thing you can do.
Organizer
Chad Mauro
Organizer
Castle Rock, WA
