- E
- P
**Please Read Our Newest Update And PLEASE SHARE**
#prayers4emmabelle
We have not lost the fight, but we are far from winning it at this point.
So, we are just getting back to the room we are staying in.....Our night was very very long, and filled with the worst kinds of emotions in the world. Our sweet baby daughter Emma, is currently on life support as I am writing this. Last night she went into cardiac arrest shortly after he heart surgery. She had to receive this heart surgery so soon because the first one did not work out for her. She was resuscitated after her first episode of cardiac arrest a couple of minutes into it. Then.....about 5 minutes later she went back into cardiac arrest. This time it lasted over an hour as they attempted to bring her back. The doctors and nurses did absolutely everything they could to bring her back manually, but were unable to, like before. She was then instructed by the surgeon to be placed on ECMO; a type of machine that does every function of the heart and lungs because her body is not capable of doing them on their own.
The surgeon told us that somehow, and he is confused as to how it happened, her heart "sprung a leak" (had a rupture, or tear) it began to lose all blood volume and she could no longer create blood pressure....effectively unable to supply blood to her brain and the rest of her body. He said that he has never seen this before, and he has been a practicing surgeon since before I was born. (I am 31).
At this point, one of two things will happen:
1. She recovers with no major damage (hopefully) to her brain caused from the cardiac arrest and the doctors attempt to bring her heart and lungs back into functioning how they need to. There is still the possibilities of other neurological damages that could have occurred, but we will only know when she begins to grow. i.e. seizures, mental and/or learning disabilities, etc.
2. They find bleeding in the brain (which could take up to a couple days), as a result of the cardiac arrest. At that point, there would be nothing more the doctors could do for her.
I would like to reiterate that the doctors and nurses did absolutely everything they could to help her. I have never seen a more eye opening display of teamwork as they performed anything and everything they knew to save her. I cannot express enough how thankful I was to each and every one of the roughly 10-12 nurses that were taking turns doing CPR, and working to keep her alive.
As any father of a daughter knows....there is love when you see her for the first time, and fear when you think about her being a teenager.
This is a story of my daughter, Emma Belle.
We found out a few months into pregnancy that our third child and first daughter would be born with a heart defect; but what we did not understand was how complicated it would be. She is perfectly healthy elsewhere....its just the way everything on the insides between her neck and legs formed did not go where they should have.
She has had my heart since the second I laid eyes on her. She was born at 8:33am on Feb. 25, 2015 weighing in at 7 lbs 11oz and a mere 20 inches long.
A week later, on March 3, she went in for her first heart surgery. With a modified Blalock-Taussig Shunt, a Gore-Tex tube is used to connect the subclavian artery to the pulmonary artery. In this case, blood comes from the single ventricle, through the pulmonary valve, the reconstructed aorta, the subclavian artery, and the conduit, to the lungs.
On March 16, they attempted to take her off of the breathing machine to let her take control herself. Because her heart is not where in should be in the human anatomy, it takes up a majority of her left lung, not allowing her to take in and exhale oxygen the way she needs. She was back on the ventilator less than an hour and a half later. She began to recover and stabalize due to all the sedatives the nurses and doctors have her on.
On March 17, I was woken (I sleep in her Cardiac ICU room with her) by the sounds of many alarms going off. When I looked at her, there was a doctor providing chest compressions and another giving air to her lungs.
Her heart had stopped pumping blood. They tell me there was a pulse, but there was no blood flow throughout her body. My daughter was blue....and I was there to watch it all.
I broke down.
I cried. A lot.
I was watching for what seemed like an eternity as the doctors tried to bring my daughter back. After about 10 minutes of compressions, her heart began pumping again. I was informed later that our daughter had gone into cardiac arrest. I was also told in their field, the 10 minutes it took to bring her back around was not long at all and the fact she was wide-eyed soon after was a good sign.
The doctors have decided to try another option to correct her heart issues. This next surgery is scheduled for March, 23. with a Sano shunt. A hole is made in the wall of the single ventricle, and a Gore-Tex conduit is used to connect the ventricle to the pulmonary artery. The key difference here is that the blood flow is more pulsatile than with the B-T version (the first attempt they made).
I am not a doctor, but here is what I can tell you about her:
- She has a type of heterotaxy:
which is a rare congenital defect in which the major organs are distributed abnormally within the chest and abdomen (in her case, the stomach, appendix, liver, gallbladder and intestines)
- Her heart is malrotated:
Every one has a left and right ventricle....but her left ventricle is on her right side, as well as her right ventricle on the left side of her body. Her heart is also rotated to create an "upstairs - downstairs" effect of the two ventricles. It is also more centered on her chest, than on the left side of her body. This also causes issues with her breathing on her own, as her heart now sits on her left lung not allowing it to fill with oxygen how it needs to.
- She is considered to have a single ventricle, becasue there is no inner wall that seperates the two.
- Her single valve that should open and close to allow blood flow at certain times, and not allow it at others leaks. This causes the heart to do more work in order to get blood where it needs to be. This also creates a loss of blood pressure because of the leak and the amount of blood that gets by when it shouldn't.
- Asplenia:
The absence of normal spleen function and is associated with some serious infection risks
- Transposition of the Great Arteries:
the large vessels that carry blood from the heart to the lungs, and to the body are improperly connected. Essentially, the connections in the heart are "swapped."
I have a difficult time putting my thoughts onto paper so, if you are still reading thank you. I am trying my best to balance my job, wife, newborn and two children at home.
Even though I have a military background full of deployments, it is still extremely difficult to be away from my children....whether I am at the hospital away from my boys at home, or while I am at home working and away from my daughter and wife. We are a 4 hour commute one-way from our house to the hosptial, where my wife, and our newborn daughter have been since Feb. 19th. I continue to travel back and forth to balance between the job we NEED and the family that NEEDS ME.
We continue to receive many prayers, thoughts, and words of encouragement. I honestly could not ask for more than that, yet there are still unforseen costs that arise the longer I am away from work. I am not salary, therefore...if I do not work, we do not receive a paycheck. Our house will need to be retrofitted with many new items to ensure there are ZERO chances for germs and infections. There is no worse feeling than that of not being able to provide for your family.
#prayers4emmabelle
We have not lost the fight, but we are far from winning it at this point.
So, we are just getting back to the room we are staying in.....Our night was very very long, and filled with the worst kinds of emotions in the world. Our sweet baby daughter Emma, is currently on life support as I am writing this. Last night she went into cardiac arrest shortly after he heart surgery. She had to receive this heart surgery so soon because the first one did not work out for her. She was resuscitated after her first episode of cardiac arrest a couple of minutes into it. Then.....about 5 minutes later she went back into cardiac arrest. This time it lasted over an hour as they attempted to bring her back. The doctors and nurses did absolutely everything they could to bring her back manually, but were unable to, like before. She was then instructed by the surgeon to be placed on ECMO; a type of machine that does every function of the heart and lungs because her body is not capable of doing them on their own.
The surgeon told us that somehow, and he is confused as to how it happened, her heart "sprung a leak" (had a rupture, or tear) it began to lose all blood volume and she could no longer create blood pressure....effectively unable to supply blood to her brain and the rest of her body. He said that he has never seen this before, and he has been a practicing surgeon since before I was born. (I am 31).
At this point, one of two things will happen:
1. She recovers with no major damage (hopefully) to her brain caused from the cardiac arrest and the doctors attempt to bring her heart and lungs back into functioning how they need to. There is still the possibilities of other neurological damages that could have occurred, but we will only know when she begins to grow. i.e. seizures, mental and/or learning disabilities, etc.
2. They find bleeding in the brain (which could take up to a couple days), as a result of the cardiac arrest. At that point, there would be nothing more the doctors could do for her.
I would like to reiterate that the doctors and nurses did absolutely everything they could to help her. I have never seen a more eye opening display of teamwork as they performed anything and everything they knew to save her. I cannot express enough how thankful I was to each and every one of the roughly 10-12 nurses that were taking turns doing CPR, and working to keep her alive.
As any father of a daughter knows....there is love when you see her for the first time, and fear when you think about her being a teenager.
This is a story of my daughter, Emma Belle.
We found out a few months into pregnancy that our third child and first daughter would be born with a heart defect; but what we did not understand was how complicated it would be. She is perfectly healthy elsewhere....its just the way everything on the insides between her neck and legs formed did not go where they should have.
She has had my heart since the second I laid eyes on her. She was born at 8:33am on Feb. 25, 2015 weighing in at 7 lbs 11oz and a mere 20 inches long.
A week later, on March 3, she went in for her first heart surgery. With a modified Blalock-Taussig Shunt, a Gore-Tex tube is used to connect the subclavian artery to the pulmonary artery. In this case, blood comes from the single ventricle, through the pulmonary valve, the reconstructed aorta, the subclavian artery, and the conduit, to the lungs.
On March 16, they attempted to take her off of the breathing machine to let her take control herself. Because her heart is not where in should be in the human anatomy, it takes up a majority of her left lung, not allowing her to take in and exhale oxygen the way she needs. She was back on the ventilator less than an hour and a half later. She began to recover and stabalize due to all the sedatives the nurses and doctors have her on.
On March 17, I was woken (I sleep in her Cardiac ICU room with her) by the sounds of many alarms going off. When I looked at her, there was a doctor providing chest compressions and another giving air to her lungs.
Her heart had stopped pumping blood. They tell me there was a pulse, but there was no blood flow throughout her body. My daughter was blue....and I was there to watch it all.
I broke down.
I cried. A lot.
I was watching for what seemed like an eternity as the doctors tried to bring my daughter back. After about 10 minutes of compressions, her heart began pumping again. I was informed later that our daughter had gone into cardiac arrest. I was also told in their field, the 10 minutes it took to bring her back around was not long at all and the fact she was wide-eyed soon after was a good sign.
The doctors have decided to try another option to correct her heart issues. This next surgery is scheduled for March, 23. with a Sano shunt. A hole is made in the wall of the single ventricle, and a Gore-Tex conduit is used to connect the ventricle to the pulmonary artery. The key difference here is that the blood flow is more pulsatile than with the B-T version (the first attempt they made).
I am not a doctor, but here is what I can tell you about her:
- She has a type of heterotaxy:
which is a rare congenital defect in which the major organs are distributed abnormally within the chest and abdomen (in her case, the stomach, appendix, liver, gallbladder and intestines)
- Her heart is malrotated:
Every one has a left and right ventricle....but her left ventricle is on her right side, as well as her right ventricle on the left side of her body. Her heart is also rotated to create an "upstairs - downstairs" effect of the two ventricles. It is also more centered on her chest, than on the left side of her body. This also causes issues with her breathing on her own, as her heart now sits on her left lung not allowing it to fill with oxygen how it needs to.
- She is considered to have a single ventricle, becasue there is no inner wall that seperates the two.
- Her single valve that should open and close to allow blood flow at certain times, and not allow it at others leaks. This causes the heart to do more work in order to get blood where it needs to be. This also creates a loss of blood pressure because of the leak and the amount of blood that gets by when it shouldn't.
- Asplenia:
The absence of normal spleen function and is associated with some serious infection risks
- Transposition of the Great Arteries:
the large vessels that carry blood from the heart to the lungs, and to the body are improperly connected. Essentially, the connections in the heart are "swapped."
I have a difficult time putting my thoughts onto paper so, if you are still reading thank you. I am trying my best to balance my job, wife, newborn and two children at home.
Even though I have a military background full of deployments, it is still extremely difficult to be away from my children....whether I am at the hospital away from my boys at home, or while I am at home working and away from my daughter and wife. We are a 4 hour commute one-way from our house to the hosptial, where my wife, and our newborn daughter have been since Feb. 19th. I continue to travel back and forth to balance between the job we NEED and the family that NEEDS ME.
We continue to receive many prayers, thoughts, and words of encouragement. I honestly could not ask for more than that, yet there are still unforseen costs that arise the longer I am away from work. I am not salary, therefore...if I do not work, we do not receive a paycheck. Our house will need to be retrofitted with many new items to ensure there are ZERO chances for germs and infections. There is no worse feeling than that of not being able to provide for your family.