Angie just posted this on our board...thank you Lord.....Angie also told another friend how much closer this has brought their family... By the way, Breezy and Bri are two of Aubrey's nicknames.
Hello everybody. I finally made it to the family resource center here in the hospital and found a computer. I've known it was here for quite some time but haven't been able to take myself away from Breezy's room for much time at all. When I'm here at the hospital I want to spend as much time as possible with her but I'm able to relax a bit now that the surgery is past. We also have a computer available at the house that we're staying in but by the time I/we get back there at night I am too exhausted to even think about posting.
Anyway, good news... She made it through the surgery very well!!! She actually did much better than they expected her to considering that she battled the pneumonia for the last week. They kept us updated on her progress every hour or so throughout the entire thing. Wonderful team of nurses, doctors, and surgeons here. She went into surgery around 11:30am-ish and was back to her PICU room around 6pm-ish. I've only read a couple of the posts from people explaining what was wrong so I'll try to elaborate a little further now that I have time.
Aubrey had a condition called anomalous left coronary artery. Basically, her left coronary artery (which supplies blood to the actual heart itself to keep it working) was attached to the pulmonary artery. It was supposed to be attached to the aorta instead, therefore meaning that the muscle around the lower left ventricle of her heart was not receiving the amount of blood it needed to function properly. We found out once we were up here that she actually had a heart attack and there is damage to that lower part of her heart. Now that the coronary artery is reattached correctly blood flow is restored and we're in the wait-and-see mode to see how well her heart heals.
The damaged part will not ever get better but they say that babies are resilient so she should bounce back to almost normal after this, even with the damage still there. They are saying that she may be able to get back to almost 100%, but we'll just have to wait and see for sure. Good news was that they didn't have to repair the mitral valve like the surgeon originally thought. Apparently once they were in there he realized the "bleed" that he thought he saw on the ultrasound wasn't there or wasn't enough to be worried about. That would have been even more invasive.
She is doing okay now. Her condition is still considered critical at this point. She's been running a bit of a temp but it is very normal after this type of surgery. It is terrible to see her laying there completely naked in such a cold room though. Ugh. It's heart-wrenching to look at her lying there so helplessly with tubes and lines coming out of her everywhere. But, we're over the largest hurdle....hopefully. They're expecting her to stay on the vent for a week to 10 days more. Once she's off the vent and a bit more stable we'll be able to move out of the PICU. Her heartrate is really high right now but they said that is actually a good thing. Blood pressures were a little low this morning but they are in normal range now.
One huge, HUGE relief is that she didn't come out of the surgery needing to rely on the ECMO machine which was a real possibility. Her heart was beating on it's own right away!! She does have a chest tube placed because some of the aveoli (air sacs in the lungs) burst while on the heart/lung machine during surgery. (Quite a common thing to happen.) Anyways, the chest tube is there to let out the excess air/gases so her lungs are able to expand to full capacity. She is fully paralyzed right now and will remain so for the next day or so.
I can't wait to see her little eyes open now and the vent taken out! I'm so sick of the vent. It keeps her from being my normal little girl. Before surgery she had a kink in her central IV and wasn't getting the proper meds to keep her sedated correctly. So, she had her eyes wide open looking at all of us, tracking us, etc. I could tell she was actually smiling a couple of times just by watching her eyes "smile"...even though her mouth wasn't technically smiling. She's such a good-natured little baby. I am still not sure why this had to happen to her... :c(
Anyways, what else? Sorry, I'm sure I'm rambling and not proofreading... We're holding up the best that we can. Days are running into each other... Losing track of time... It seems the world has stopped in a way. Our world is right here in this hospital for now. I'm so thankful to have a beautiful house to go to at night, provided by the hospital for families with very sick children. We're too far away to travel back and forth to our own home. I wouldn't be able to stand being that far away from Bri either.
The other kids are doing very well considering the sudden circumstances they've had to go through. They are currently still staying at my BIL's house in a suburb of Omaha, so they aren't too far away from the us. We talk to them each day and they'll be coming to spend a night or two with us soon. Aiden calls my BIL daddy because he and Lonnie look and sound so similar. So, in a way, that's a good thing because it gives him a sense of familiarity. (Prior to all of this we didn't get to see BIL and his family all that much due to all of us leading very busy lives...even though we only live about 70 miles apart from one another.) So, I was scared that Aiden would have a very difficult time with so many new faces and places. So far he's been a little trooper...thank God! The hospital has some child psychologist's that are working with the other kids to help them understand what is going on in terms that they're able to take in.
I'm sure I've missed a few things but I must run for now... Thank you to everyone for all of the phone calls and prayers. We have certainly been feeling them. It means more to us than ya'll realize. This has definitely changed our lives. It's been one heckuva roller coaster ride...lots of ups and downs. We aren't through it yet but with so many prayers behind us I'm beginning to feel more confident that things may just turn out well. Please continue to keep Aubrey in your thoughts/prayers as we aren't completely out of the woods yet. When I get a chance I will share some pictures... I'll have to ask Lonnie about that since this isn't our own computer that I'm using. I will try to keep everyone updated better from now on. It's just been such a terrible whirlwind leading up to her surgery yesterday. Sorry I haven't posted much till now. Take care and love to you all.
Hello everybody. I finally made it to the family resource center here in the hospital and found a computer. I've known it was here for quite some time but haven't been able to take myself away from Breezy's room for much time at all. When I'm here at the hospital I want to spend as much time as possible with her but I'm able to relax a bit now that the surgery is past. We also have a computer available at the house that we're staying in but by the time I/we get back there at night I am too exhausted to even think about posting.
Anyway, good news... She made it through the surgery very well!!! She actually did much better than they expected her to considering that she battled the pneumonia for the last week. They kept us updated on her progress every hour or so throughout the entire thing. Wonderful team of nurses, doctors, and surgeons here. She went into surgery around 11:30am-ish and was back to her PICU room around 6pm-ish. I've only read a couple of the posts from people explaining what was wrong so I'll try to elaborate a little further now that I have time.
Aubrey had a condition called anomalous left coronary artery. Basically, her left coronary artery (which supplies blood to the actual heart itself to keep it working) was attached to the pulmonary artery. It was supposed to be attached to the aorta instead, therefore meaning that the muscle around the lower left ventricle of her heart was not receiving the amount of blood it needed to function properly. We found out once we were up here that she actually had a heart attack and there is damage to that lower part of her heart. Now that the coronary artery is reattached correctly blood flow is restored and we're in the wait-and-see mode to see how well her heart heals.
The damaged part will not ever get better but they say that babies are resilient so she should bounce back to almost normal after this, even with the damage still there. They are saying that she may be able to get back to almost 100%, but we'll just have to wait and see for sure. Good news was that they didn't have to repair the mitral valve like the surgeon originally thought. Apparently once they were in there he realized the "bleed" that he thought he saw on the ultrasound wasn't there or wasn't enough to be worried about. That would have been even more invasive.
She is doing okay now. Her condition is still considered critical at this point. She's been running a bit of a temp but it is very normal after this type of surgery. It is terrible to see her laying there completely naked in such a cold room though. Ugh. It's heart-wrenching to look at her lying there so helplessly with tubes and lines coming out of her everywhere. But, we're over the largest hurdle....hopefully. They're expecting her to stay on the vent for a week to 10 days more. Once she's off the vent and a bit more stable we'll be able to move out of the PICU. Her heartrate is really high right now but they said that is actually a good thing. Blood pressures were a little low this morning but they are in normal range now.
One huge, HUGE relief is that she didn't come out of the surgery needing to rely on the ECMO machine which was a real possibility. Her heart was beating on it's own right away!! She does have a chest tube placed because some of the aveoli (air sacs in the lungs) burst while on the heart/lung machine during surgery. (Quite a common thing to happen.) Anyways, the chest tube is there to let out the excess air/gases so her lungs are able to expand to full capacity. She is fully paralyzed right now and will remain so for the next day or so.
I can't wait to see her little eyes open now and the vent taken out! I'm so sick of the vent. It keeps her from being my normal little girl. Before surgery she had a kink in her central IV and wasn't getting the proper meds to keep her sedated correctly. So, she had her eyes wide open looking at all of us, tracking us, etc. I could tell she was actually smiling a couple of times just by watching her eyes "smile"...even though her mouth wasn't technically smiling. She's such a good-natured little baby. I am still not sure why this had to happen to her... :c(
Anyways, what else? Sorry, I'm sure I'm rambling and not proofreading... We're holding up the best that we can. Days are running into each other... Losing track of time... It seems the world has stopped in a way. Our world is right here in this hospital for now. I'm so thankful to have a beautiful house to go to at night, provided by the hospital for families with very sick children. We're too far away to travel back and forth to our own home. I wouldn't be able to stand being that far away from Bri either.
The other kids are doing very well considering the sudden circumstances they've had to go through. They are currently still staying at my BIL's house in a suburb of Omaha, so they aren't too far away from the us. We talk to them each day and they'll be coming to spend a night or two with us soon. Aiden calls my BIL daddy because he and Lonnie look and sound so similar. So, in a way, that's a good thing because it gives him a sense of familiarity. (Prior to all of this we didn't get to see BIL and his family all that much due to all of us leading very busy lives...even though we only live about 70 miles apart from one another.) So, I was scared that Aiden would have a very difficult time with so many new faces and places. So far he's been a little trooper...thank God! The hospital has some child psychologist's that are working with the other kids to help them understand what is going on in terms that they're able to take in.
I'm sure I've missed a few things but I must run for now... Thank you to everyone for all of the phone calls and prayers. We have certainly been feeling them. It means more to us than ya'll realize. This has definitely changed our lives. It's been one heckuva roller coaster ride...lots of ups and downs. We aren't through it yet but with so many prayers behind us I'm beginning to feel more confident that things may just turn out well. Please continue to keep Aubrey in your thoughts/prayers as we aren't completely out of the woods yet. When I get a chance I will share some pictures... I'll have to ask Lonnie about that since this isn't our own computer that I'm using. I will try to keep everyone updated better from now on. It's just been such a terrible whirlwind leading up to her surgery yesterday. Sorry I haven't posted much till now. Take care and love to you all.
