CaptHeather
10-19-2007, 12:08 PM
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LuvaBaby
Member
Reged: 04/20/05
Posts: 1472
Loc: Texas Memories of Noah Alexander
#42298 - 08/11/05 04:26 AM Edit Reply Quote Quick Reply
Noah Alexander was my first born child. He was beautiful in every way. Weighing in at 6 pounds 13 oz and 19 1/2 inches long he looked absolutely perfect.
His beautiful full lips, and cheeks were so adorable! We thought he might end up with my red hair. He was such a sweet baby.
He went home from the hospital with jaundice on the bili light. At 5 days old we went back to the hospital to return the light. The nurse who was also my child birth instructor said he looked more yellow. So she sent us to the lab to have his bili checked again. After the results came back we were sent up to the pediatricians office right there in the clinic that was attatched to the hospital and the Dr. heard a heart murmer.
Dr. Baker sent us to St. Louis Childrens Hospital and after an echo and numorous other test we learned he had truncus arteriosus and a hole in his heart. He would have to have surgery. He was also dehydrated and his bili levels were dangerously high.
After he was rehydrated and his bili levels were normal they did surgery. I remember them wheeling him on a giant bed down to the O.R. There was a nurse bagging him, they rolled past the waiting area where I had to say good bye and give him a kiss. If it weren't for my DH telling me to let him go I don't know that I could have. I was a basket case. I knew there was a possibility I would never see him alive again.
He came out of surgery on the ECMO machine. It's basically life support. It was living for him. There were I.V. poles everywhere. His chest was left open and a clear plastic saran wrap looking thing was his only protection. You could see right into his chest. They couldn't cover him with a blanket for a while after surgery so I had to see my little baby like that.
After 3 days on life support he developed bleeding on his brain from the Heprin he was on for the ECMO machine. DH and I made the decision to turn off the life support. Our son was suffering and we were keeping him from being where he needed to be. That was with Jesus in Heaven.
It was the hardest decision we ever had to make.
After the family said their goodbye's, three nurses had to lift him out of his bed and place him in my arms. He was heavy from the fluid from I.V.'s and the swelling. He also had so many tubes that it would have been an impossible feat for one person.
The nurses placed him in my arms and I sang him to sleep in a rocking chair. I sang "What Heaven Means to Me" and "Brahams Lullibye". I felt his spirit slip from him. I can't describe the peace at that moment when I should have been going nuts.
This was in November of 1998. My precious Noah lived 16 days.
It was discovered afterwards that he had SCIMITAR SYNDROME also. It is actually what caused his death.
The doctor said that he was the only child ever recorded to have this combination of congenital heart disease.
Psalms 139:14 I will praise you, for I am fearfully and wonderfully made, Marvelous are thy works and that my soul knoweth right well.
The first part of that verse is on his grave stone.
I hope by sharing my story I can be of some help to someone else. If you have lost a child I know your pain. Please talk to someone who can help you. It has been almost 7 years since this tradgedy happened to me. I have bad days still, but I can talk about it now without crying. I have found strength in God. He has given me peace beyond my understanding.
Feel free to ask any questions or PM me if you want to be more private.
LuvaBaby
Member
Reged: 04/20/05
Posts: 1472
Loc: Texas Memories of Noah Alexander
#42298 - 08/11/05 04:26 AM Edit Reply Quote Quick Reply
Noah Alexander was my first born child. He was beautiful in every way. Weighing in at 6 pounds 13 oz and 19 1/2 inches long he looked absolutely perfect.
His beautiful full lips, and cheeks were so adorable! We thought he might end up with my red hair. He was such a sweet baby.
He went home from the hospital with jaundice on the bili light. At 5 days old we went back to the hospital to return the light. The nurse who was also my child birth instructor said he looked more yellow. So she sent us to the lab to have his bili checked again. After the results came back we were sent up to the pediatricians office right there in the clinic that was attatched to the hospital and the Dr. heard a heart murmer.
Dr. Baker sent us to St. Louis Childrens Hospital and after an echo and numorous other test we learned he had truncus arteriosus and a hole in his heart. He would have to have surgery. He was also dehydrated and his bili levels were dangerously high.
After he was rehydrated and his bili levels were normal they did surgery. I remember them wheeling him on a giant bed down to the O.R. There was a nurse bagging him, they rolled past the waiting area where I had to say good bye and give him a kiss. If it weren't for my DH telling me to let him go I don't know that I could have. I was a basket case. I knew there was a possibility I would never see him alive again.
He came out of surgery on the ECMO machine. It's basically life support. It was living for him. There were I.V. poles everywhere. His chest was left open and a clear plastic saran wrap looking thing was his only protection. You could see right into his chest. They couldn't cover him with a blanket for a while after surgery so I had to see my little baby like that.
After 3 days on life support he developed bleeding on his brain from the Heprin he was on for the ECMO machine. DH and I made the decision to turn off the life support. Our son was suffering and we were keeping him from being where he needed to be. That was with Jesus in Heaven.
It was the hardest decision we ever had to make.
After the family said their goodbye's, three nurses had to lift him out of his bed and place him in my arms. He was heavy from the fluid from I.V.'s and the swelling. He also had so many tubes that it would have been an impossible feat for one person.
The nurses placed him in my arms and I sang him to sleep in a rocking chair. I sang "What Heaven Means to Me" and "Brahams Lullibye". I felt his spirit slip from him. I can't describe the peace at that moment when I should have been going nuts.
This was in November of 1998. My precious Noah lived 16 days.
It was discovered afterwards that he had SCIMITAR SYNDROME also. It is actually what caused his death.
The doctor said that he was the only child ever recorded to have this combination of congenital heart disease.
Psalms 139:14 I will praise you, for I am fearfully and wonderfully made, Marvelous are thy works and that my soul knoweth right well.
The first part of that verse is on his grave stone.
I hope by sharing my story I can be of some help to someone else. If you have lost a child I know your pain. Please talk to someone who can help you. It has been almost 7 years since this tradgedy happened to me. I have bad days still, but I can talk about it now without crying. I have found strength in God. He has given me peace beyond my understanding.
Feel free to ask any questions or PM me if you want to be more private.