Sammy is our "rainbow" baby. After loosing our middle son Logan, my husband and I were not in any hurry to have another baby. Not yet. But God had other plans for our family. After a long and difficult 8 months, God blessed us with another beautiful baby boy. After delivery the doctor heard a murmur, so she took Samuel to get an ultrasound of his heart and sent it to Riley to read. After a few hours of waiting the Doctor came back to tell us that Sammy had a sever heart defect called Tetralogy of Fallot. My husband Jason and I just looked at each other. We had no idea what that was and had never heard of it. The way the doctor explained it to us was that there are 4 different things wrong with his heart.Tetralogy of Fallot is a rare, complex heart defect. It occurs in about 5 out of every 10,000 babies. The defect affects boys and girls equally.Tetralogy of Fallot involves four heart defects:
A large ventricular septal defect ,Pulmonary stenosis, Right ventricular hypertrophy and an overriding aorta. Sammy started having problems with his oxygen. His oxygen level continued to drop, so on January 31st 2013, Sammy went in for his first heart surgery. The doctors placed a BT shunt in hopes for a temporary fix until he was a little older and bigger for the "repair" surgery. The shunt lasted for a while but then his oxygen level started dropping again. So we decided that on July 1st 2013 he would go in for his TOF Repair. Sammy did great that day. The surgery lasted 8 or 9 hours. The nurse finally came and got us and told us they were taking Sammy to PICU and he was doing great. The were able to extubate him right away and we could go back to see him. He looked really good. On July 2nd 2013 we went in to see Sammy and he was still doing really good. He was a little fussy, so the doctors let me feed him some pedialite. He did really well with that and so an hour later they let me try giving him some formula. He was so hungry that he sucked down 3 ounces in 5 minutes. I was so scared that he would aspirate from drinking so fast that I took the bottle away and gave him his passy. The nurse noticed his arterial line was going bad and needed to be removed, so she started to take it out and that's where this nightmare truly begins. Alarms started going off so I looked up and looked back down at Sammy and he was a very dark grey color almost black and his eyes were dead looking at me. It was the scariest sight of my life. Doctors and nurses rushed in and all I remember is screaming for them to save my baby. I can not believe this was happening again. God please don't take my baby!!! Save him!! As they are doing chest compressions, my husband takes off running looking for our favorite nurse who has been by our side since we took our Logan off life support, I hear some one yell "clear"! My heart is breaking. I can't breathe, my legs feel like noodles, I feel like I'm about to pass out. I hear "clear" again and again and again. Finally I hear "we have a rhythm" 'get him to the OR". As they start to wheel Sammy to the OR I was able to sneak a little kiss. I remember asking Sammy to stay with me. Fight Sammy, fight for Mommy. Five or six hours later they bring him back to the PICU. He was hooked up to an ECHMO machine. An ECHMO machine is a heart and lung bypass. They wanted to give his heart and lungs a break and give them a chance to rest and recover. While on this machine, Sammy started having seizures. The doctors had Sam on several seizure medications but he was still having them. After 5 days of being on the ECHMO machine he was finally able to come off. Things were starting to get better. Sammy was starting to get better. Finally we were able to get an MRI to see how much brain damage was done from the lack of blood flow during the event. The results came back that Sammy suffered traumatic brain damage. This is not news that we wanted to hear. Sammy was able to go to the heart center. The step before home. Sam had to have a g-tube placed because he is on so much medication and he was not eating enough by mouth. On August 7th 2013 we got to bring our Sammy home. Sammy
is not out of the woods yet. We have a lot of doctors appointments and a very long road ahead of us. We are overcoming obstacles and Sammy is doing things that the doctors said he may not ever do. The eye doctor said that Sammy was not seeing, now he is seeing. He's baring weight on his legs, he has stared rolling on to his side, he is smiling and laughing and babbling. He says dadada and mamama, he gives kisses and loves to cuddle. There was a time in the hospital that Sammy did not like or want to be held. Its the complete opposite now. As of right now, Sammy has had several ear infections and we are waiting for our appointment with ENT in November to schedule a time to get tubes placed. He has stopped eating by mouth, so we have to tube feed all of his feedings for a while, he is on a special formula, one that is partially digested called Peptamen Jr.We are hoping this will help. Sammy has started physical therapy, occupational therapy and developmental therapy and is doing great! He has surely come a long way.
A large ventricular septal defect ,Pulmonary stenosis, Right ventricular hypertrophy and an overriding aorta. Sammy started having problems with his oxygen. His oxygen level continued to drop, so on January 31st 2013, Sammy went in for his first heart surgery. The doctors placed a BT shunt in hopes for a temporary fix until he was a little older and bigger for the "repair" surgery. The shunt lasted for a while but then his oxygen level started dropping again. So we decided that on July 1st 2013 he would go in for his TOF Repair. Sammy did great that day. The surgery lasted 8 or 9 hours. The nurse finally came and got us and told us they were taking Sammy to PICU and he was doing great. The were able to extubate him right away and we could go back to see him. He looked really good. On July 2nd 2013 we went in to see Sammy and he was still doing really good. He was a little fussy, so the doctors let me feed him some pedialite. He did really well with that and so an hour later they let me try giving him some formula. He was so hungry that he sucked down 3 ounces in 5 minutes. I was so scared that he would aspirate from drinking so fast that I took the bottle away and gave him his passy. The nurse noticed his arterial line was going bad and needed to be removed, so she started to take it out and that's where this nightmare truly begins. Alarms started going off so I looked up and looked back down at Sammy and he was a very dark grey color almost black and his eyes were dead looking at me. It was the scariest sight of my life. Doctors and nurses rushed in and all I remember is screaming for them to save my baby. I can not believe this was happening again. God please don't take my baby!!! Save him!! As they are doing chest compressions, my husband takes off running looking for our favorite nurse who has been by our side since we took our Logan off life support, I hear some one yell "clear"! My heart is breaking. I can't breathe, my legs feel like noodles, I feel like I'm about to pass out. I hear "clear" again and again and again. Finally I hear "we have a rhythm" 'get him to the OR". As they start to wheel Sammy to the OR I was able to sneak a little kiss. I remember asking Sammy to stay with me. Fight Sammy, fight for Mommy. Five or six hours later they bring him back to the PICU. He was hooked up to an ECHMO machine. An ECHMO machine is a heart and lung bypass. They wanted to give his heart and lungs a break and give them a chance to rest and recover. While on this machine, Sammy started having seizures. The doctors had Sam on several seizure medications but he was still having them. After 5 days of being on the ECHMO machine he was finally able to come off. Things were starting to get better. Sammy was starting to get better. Finally we were able to get an MRI to see how much brain damage was done from the lack of blood flow during the event. The results came back that Sammy suffered traumatic brain damage. This is not news that we wanted to hear. Sammy was able to go to the heart center. The step before home. Sam had to have a g-tube placed because he is on so much medication and he was not eating enough by mouth. On August 7th 2013 we got to bring our Sammy home. Sammy
is not out of the woods yet. We have a lot of doctors appointments and a very long road ahead of us. We are overcoming obstacles and Sammy is doing things that the doctors said he may not ever do. The eye doctor said that Sammy was not seeing, now he is seeing. He's baring weight on his legs, he has stared rolling on to his side, he is smiling and laughing and babbling. He says dadada and mamama, he gives kisses and loves to cuddle. There was a time in the hospital that Sammy did not like or want to be held. Its the complete opposite now. As of right now, Sammy has had several ear infections and we are waiting for our appointment with ENT in November to schedule a time to get tubes placed. He has stopped eating by mouth, so we have to tube feed all of his feedings for a while, he is on a special formula, one that is partially digested called Peptamen Jr.We are hoping this will help. Sammy has started physical therapy, occupational therapy and developmental therapy and is doing great! He has surely come a long way.