Since the 1 year mark is coming up on Tanner's birth (woo hoo!) and also his surgery and hospital stays, I have been thinking and remembering more and more things that I did not include in this blog.
I am very happy that I am remembering some things and never want to forget them. There were so many things that happened both happy and sad in that time that I want to remember. We were told so many different and new things in such a short amount of time my brain was mush and could not get anything back out of my brain during that time. I want to have a record of what I can still remember before any of it becomes more dim than it already is.
I am going to be updating the blog with these little tid bits around the dates that they actually happened. I will put the actual date of when I wrote the post somewhere in there and also label them "after thought" so I, and also others will be able to tell a difference between in the moment posts and after the fact posts.
Wish me luck in remembering things!
Showing posts with label after thought. Show all posts
Showing posts with label after thought. Show all posts
Friday, January 27, 2012
Tuesday, February 15, 2011
Yay the Floor! eh...
Written 1-27-12
It was pretty exciting getting moved to the floor since it was the last step before getting discharged. There were some nice things about it, and also some not so nice things.
When we first got settled of course I needed to pump again. So I went to the desk and asked where I needed to go. At first I got a little frustrated because they didn't seem to know where to tell me to go or anything. But then they next thing I knew they brought me my own pump right to our room! I was finally able to pump whenever I needed to without having to wait for anyone else. The only problem is we shared a room with another patient and his mom, so I had to figure a way to point myself into a corner and position the curtain just right. Also, the sink in the room to be able to wash my pump stuff was on the side where they were. So sometimes I felt like I was intruding, but other than that? Great!
Speaking of that other patient, he was a very cute little Hispanic boy. Probably 3 or 4. I overheard that all of his internal organs were flipped. So what should have been on the left was on the right and visa versa. So I didn't blame him one bit for constantly whining. But the fact that he was also constantly coughing? Kinda freaked me out and made me wonder why they would have put a baby fresh out of heart surgery in a room with a sick kid.
I asked the nurses about his coughing, if he was sick and if we should be moved to another room. They said they would go check on that. .........??? When they finally came back (a couple hours later) they said he was not contagious and not to worry. Thanks for leaving me high and dry and worrying for the last couple hours though ladies!
After we were on the floor I never left the hospital. The only times I would go back to the Ronald McDonald house to shower and change was if Kathy was with Tanner. I loved being able to stay with him overnight and care for him more. But it also made me very cautious of the staff.
The first night we were there, I heard a baby crying one room away from us for over an hour before anyone went in to check on her. Was she hungry? Was she in pain? Was she just lonely? NO IDEA! After that I was all that much more determined to always have either myself or Kathy with Tanner while we were there.
One kind of fun thing was that Tanner needed an x-ray while we were on the floor. I was expecting that we would be rolled off somewhere to have this done. Nope! Next thing I knew, the x-ray guy was knocking on the door and dragged his huge machine into our room. Awesome! Tanner was able to be x-rayed right in his own room in his own bed. It was so nice.
It was pretty exciting getting moved to the floor since it was the last step before getting discharged. There were some nice things about it, and also some not so nice things.
When we first got settled of course I needed to pump again. So I went to the desk and asked where I needed to go. At first I got a little frustrated because they didn't seem to know where to tell me to go or anything. But then they next thing I knew they brought me my own pump right to our room! I was finally able to pump whenever I needed to without having to wait for anyone else. The only problem is we shared a room with another patient and his mom, so I had to figure a way to point myself into a corner and position the curtain just right. Also, the sink in the room to be able to wash my pump stuff was on the side where they were. So sometimes I felt like I was intruding, but other than that? Great!
Speaking of that other patient, he was a very cute little Hispanic boy. Probably 3 or 4. I overheard that all of his internal organs were flipped. So what should have been on the left was on the right and visa versa. So I didn't blame him one bit for constantly whining. But the fact that he was also constantly coughing? Kinda freaked me out and made me wonder why they would have put a baby fresh out of heart surgery in a room with a sick kid.
I asked the nurses about his coughing, if he was sick and if we should be moved to another room. They said they would go check on that. .........??? When they finally came back (a couple hours later) they said he was not contagious and not to worry. Thanks for leaving me high and dry and worrying for the last couple hours though ladies!
After we were on the floor I never left the hospital. The only times I would go back to the Ronald McDonald house to shower and change was if Kathy was with Tanner. I loved being able to stay with him overnight and care for him more. But it also made me very cautious of the staff.
The first night we were there, I heard a baby crying one room away from us for over an hour before anyone went in to check on her. Was she hungry? Was she in pain? Was she just lonely? NO IDEA! After that I was all that much more determined to always have either myself or Kathy with Tanner while we were there.
One kind of fun thing was that Tanner needed an x-ray while we were on the floor. I was expecting that we would be rolled off somewhere to have this done. Nope! Next thing I knew, the x-ray guy was knocking on the door and dragged his huge machine into our room. Awesome! Tanner was able to be x-rayed right in his own room in his own bed. It was so nice.
Monday, February 14, 2011
Are you kidding me?
Written 1-27-12
Ok, so this one is kind of negative. Just warning you. But it really ticked me off and I can't seem to get it out of my head! So hopefully if I get it in writing I'll let it go... or not. We'll see.
Anyway!
The first night that I was able to hold Tanner was great. The nurse that we had was very good. She was the one that finally let me hold him. The one that showed me that I could burp him on my shoulder without hurting him. The one that figured out how to get him to eat more by switching to a different kind of nipple.
After everything she did that was so positive, there is still one thing that just royally pisses me off. It was the first night that she was our nurse. She was taking care of him and getting his vitals and everything. I was sitting on a chair blogging and Kathy was standing by Tanner's bed watching.
The nurse (I can't remember her name now) and Kathy were chatting and out of no where she asked if she wanted to hold Tanner! I popped my head up from my laptop right as she said this and started to cry and about ready to flip out. I am the mother, shouldn't I be the first one to hold him after not being able to for 3 days?!? (of course I am such a wimp, that was internal dialogue) Luckily Kathy said something along the lines of letting me hold him first and then she would if I was ok with it.
I was so happy that she said something because I still could not believe what that nurse just did and that I would not have been the first one to hold him (besides the nurses). I got all situated in a chair to be able to hold him and was handed my baby for the first time after surgery.
The pictures of this show my crying. To tell the truth, there were two different reasons that I was crying. One, of course, was that I was finally holding my little Tanner again! And the second, was that I was sooooo pissed off at that nurse for what she did.
I never told her or Kathy that was another reason that I was crying. But I sure called Kollin afterwards and told him. He wasn't too happy either. We were trying to think why she would have done that, and the only thing we could really think of was that for some odd reason she possibly thought that Kathy was the mom or that she thought I had already gotten to hold him before that? Other than that, we were stumped.
At least the nurse made up for it with all the other great things she did for Tanner and me.
Ok, so this one is kind of negative. Just warning you. But it really ticked me off and I can't seem to get it out of my head! So hopefully if I get it in writing I'll let it go... or not. We'll see.
Anyway!
The first night that I was able to hold Tanner was great. The nurse that we had was very good. She was the one that finally let me hold him. The one that showed me that I could burp him on my shoulder without hurting him. The one that figured out how to get him to eat more by switching to a different kind of nipple.
After everything she did that was so positive, there is still one thing that just royally pisses me off. It was the first night that she was our nurse. She was taking care of him and getting his vitals and everything. I was sitting on a chair blogging and Kathy was standing by Tanner's bed watching.
The nurse (I can't remember her name now) and Kathy were chatting and out of no where she asked if she wanted to hold Tanner! I popped my head up from my laptop right as she said this and started to cry and about ready to flip out. I am the mother, shouldn't I be the first one to hold him after not being able to for 3 days?!? (of course I am such a wimp, that was internal dialogue) Luckily Kathy said something along the lines of letting me hold him first and then she would if I was ok with it.
I was so happy that she said something because I still could not believe what that nurse just did and that I would not have been the first one to hold him (besides the nurses). I got all situated in a chair to be able to hold him and was handed my baby for the first time after surgery.
The pictures of this show my crying. To tell the truth, there were two different reasons that I was crying. One, of course, was that I was finally holding my little Tanner again! And the second, was that I was sooooo pissed off at that nurse for what she did.
I never told her or Kathy that was another reason that I was crying. But I sure called Kollin afterwards and told him. He wasn't too happy either. We were trying to think why she would have done that, and the only thing we could really think of was that for some odd reason she possibly thought that Kathy was the mom or that she thought I had already gotten to hold him before that? Other than that, we were stumped.
At least the nurse made up for it with all the other great things she did for Tanner and me.
Saturday, February 12, 2011
Breathing with some Phantom
Written 1-27-12
One thing I forgot to mention was when the Respiratory Therapist (he is the one guy who's name I didn't get! doh!) was working on Tanner, taking his breathing tube and feeding tube out and adjusting his oxygen, he was humming Phantom of the Opera songs to him.
He would hum "Think of Me" and "All I Ask of You" to him and it made my heart just melt.
I don't ever want to forget that, and I can still remember his soothing humming voice.
One thing I forgot to mention was when the Respiratory Therapist (he is the one guy who's name I didn't get! doh!) was working on Tanner, taking his breathing tube and feeding tube out and adjusting his oxygen, he was humming Phantom of the Opera songs to him.
He would hum "Think of Me" and "All I Ask of You" to him and it made my heart just melt.
I don't ever want to forget that, and I can still remember his soothing humming voice.
Thursday, February 10, 2011
In Progress
Written 1-27-12
During Tanner's surgery my parents did a great job of trying to keep me distracted and not freak out too much. They said they would call me on my cel with updates and when everything was done.
Just after he was taken away my dad and I went downstairs to the lobby and found Gwen. Only two visitors were allowed in the CTICU at a time, so we had to shuffle a lot. We found her and sat down. I called Kollin to let him know that our little boy was in the surgeon's hands now. I couldn't handle it anymore. I started to break down and collapsed into my dad's lap.
I remember laying there and getting tears all over the leg of my dad's pants as I was bawling into the phone to Kollin. I think I stayed on the phone with Kollin for a good 10 minutes or so with him just listening to me cry and trying to comfort me. I don't know how he was able to keep himself composed, although I know he was at work and was trying his best not to think about it and break down himself.
After I was finally able to compose myself enough, my dad and Gwen took me to the hospital cafeteria to try to get something to eat. I don't think I was able to eat all of what I got, but I remember being surprised that I was able to eat at all.
After we ate I was in such a daze I can't remember if we did anything else or just went up to the visitor's lounge and sat in there until we got the call that he was done.
I remember at some points I did get phone calls letting me know that surgery was started and what different procedures had been done. At some point I just gave the phone to my dad because I just couldn't fit anything else in my brain at that point and he could translate for me easier anyway.
My dad told me that the surgeon did some part of the surgery (now that I'm thinking about it, of course I can't remember what part) in 20 minutes. Apparently this was impressive because he told me that he was very amazed with all of the intricate things the surgeon was able to do in just that amount of time when he can't even suture a finger in 20 minutes. At least that got me to smile.
Gwen had also found out at some point that Tanner's surgeon had also done a heart proceedure on Arnold Schwarzenegger about 7 years or so before! I thought that was pretty interesting and have always said that if Dr. Starnes (love him by the way) is good enough for the Govinator, then he is good enough for my baby!
During Tanner's surgery my parents did a great job of trying to keep me distracted and not freak out too much. They said they would call me on my cel with updates and when everything was done.
Just after he was taken away my dad and I went downstairs to the lobby and found Gwen. Only two visitors were allowed in the CTICU at a time, so we had to shuffle a lot. We found her and sat down. I called Kollin to let him know that our little boy was in the surgeon's hands now. I couldn't handle it anymore. I started to break down and collapsed into my dad's lap.
I remember laying there and getting tears all over the leg of my dad's pants as I was bawling into the phone to Kollin. I think I stayed on the phone with Kollin for a good 10 minutes or so with him just listening to me cry and trying to comfort me. I don't know how he was able to keep himself composed, although I know he was at work and was trying his best not to think about it and break down himself.
After I was finally able to compose myself enough, my dad and Gwen took me to the hospital cafeteria to try to get something to eat. I don't think I was able to eat all of what I got, but I remember being surprised that I was able to eat at all.
After we ate I was in such a daze I can't remember if we did anything else or just went up to the visitor's lounge and sat in there until we got the call that he was done.
I remember at some points I did get phone calls letting me know that surgery was started and what different procedures had been done. At some point I just gave the phone to my dad because I just couldn't fit anything else in my brain at that point and he could translate for me easier anyway.
My dad told me that the surgeon did some part of the surgery (now that I'm thinking about it, of course I can't remember what part) in 20 minutes. Apparently this was impressive because he told me that he was very amazed with all of the intricate things the surgeon was able to do in just that amount of time when he can't even suture a finger in 20 minutes. At least that got me to smile.
Gwen had also found out at some point that Tanner's surgeon had also done a heart proceedure on Arnold Schwarzenegger about 7 years or so before! I thought that was pretty interesting and have always said that if Dr. Starnes (love him by the way) is good enough for the Govinator, then he is good enough for my baby!
Wednesday, February 9, 2011
Blessings
Written 4-1-2012
After everything had calmed down and everyone was settled at CHLA I asked my dad to give Tanner another blessing before his surgery.
I was holding Tanner in my arms and sitting in a chair. My dad knelt down in front of us and place his hands on his head.
Again, I bawled through it. I remember it being such a sweet blessing.
Later that evening there was a Pastor (or something... I don't know what denomination he was and I don't know all the terms, sorry) that came and visited us. He was so nice and offered me his support. He let me know where the chapel in the hospital was and also offered if I wanted to arrange for Tanner to have a blessing.
I told him that my dad had already given him a blessing. He seemed surprised that my dad was able to do it and wondered what our religion and what his calling in the church was to be able to give blessings. I told him we were LDS and he seemed very curious about it and that he honestly didn't know much, if anything, about it.
Luckily my dad was still there with me and he was able to talk more in depth about the LDS religion.
While they were speaking I remember thinking how grateful I was that any man that holds the Priesthood in our religion is able to give a blessing to someone in need of it. That I never realized how available it has always been to me.
After everything had calmed down and everyone was settled at CHLA I asked my dad to give Tanner another blessing before his surgery.
I was holding Tanner in my arms and sitting in a chair. My dad knelt down in front of us and place his hands on his head.
Again, I bawled through it. I remember it being such a sweet blessing.
Later that evening there was a Pastor (or something... I don't know what denomination he was and I don't know all the terms, sorry) that came and visited us. He was so nice and offered me his support. He let me know where the chapel in the hospital was and also offered if I wanted to arrange for Tanner to have a blessing.
I told him that my dad had already given him a blessing. He seemed surprised that my dad was able to do it and wondered what our religion and what his calling in the church was to be able to give blessings. I told him we were LDS and he seemed very curious about it and that he honestly didn't know much, if anything, about it.
Luckily my dad was still there with me and he was able to talk more in depth about the LDS religion.
While they were speaking I remember thinking how grateful I was that any man that holds the Priesthood in our religion is able to give a blessing to someone in need of it. That I never realized how available it has always been to me.
Pumping Troubles
Written 1-27-12
Shortly after I got to CHLA with Tanner, I really needed to go and pump. To put it lightly, my boobs were so engorged they were killing me after that long flight!
So the nurse that was assigned to Tanner showed me around quickly on what I needed to do to go and pump milk for him and get it stored.
Here are the steps I had to take, and why I love Primary's SO much more!
Step 1: Go to the main desk in the CTICU (the unit Tanner was in) and ask for the "pump key."
~ what?? That was my first thought that this was going to get rediculous.
Step 2: Once you get the pump key (sometimes it took a little bit of tracking down), go out the big double doors to get out of the unit, down a few hallways, around more corners into the "visitors' lounge."
~ The pump room at Primary's was IN the CICU. And if that one was busy, there were other actual "pump rooms" that could be easily found.
Step 3: One of the overnight rooms for parents to reserve the day of to stay in overnight is a make shift pump room. Unlock the door with the key and go in and pump.
~ ha. Ya right. The first time I tried to go in while the nurse was showing me around there was already someone in there. Even the nurse was stunned on how they got in. The husband came to the door (with an attitude no less) and said that another unit said for them to come to this room, and if it was unlocked then to just use it. (so that just made the pump key irrelivent!)
~Also, that same couple (with attitude included) were in that room probably about half the times I tried to go and use the pump. I ended up finding a spare pump somehow and pumping in the visitors' bathroom no less. Ew.
~ And that make shift pump room was always gross from whoever used it for the overnight room.
Step 4: Take your pumped milk back to the nurse that is watching your baby and ask them go and put it in the freezer.
~ At Primary's we could just go put our milk in the freezer ourselves. Each baby was assigned a little tub to put the milk in so it wouldn't get mixed up with other babies'.
~At CHLA, I didn't have access to the freezer and felt like I was making the nurse go out of their way to go and put it away. There were even times I had to ask them a few different times to put it away because they kept forgetting.
That is one more entire reason I hate it here. It's not like I don't need to deal with anymore stress!
Shortly after I got to CHLA with Tanner, I really needed to go and pump. To put it lightly, my boobs were so engorged they were killing me after that long flight!
So the nurse that was assigned to Tanner showed me around quickly on what I needed to do to go and pump milk for him and get it stored.
Here are the steps I had to take, and why I love Primary's SO much more!
Step 1: Go to the main desk in the CTICU (the unit Tanner was in) and ask for the "pump key."
~ what?? That was my first thought that this was going to get rediculous.
Step 2: Once you get the pump key (sometimes it took a little bit of tracking down), go out the big double doors to get out of the unit, down a few hallways, around more corners into the "visitors' lounge."
~ The pump room at Primary's was IN the CICU. And if that one was busy, there were other actual "pump rooms" that could be easily found.
Step 3: One of the overnight rooms for parents to reserve the day of to stay in overnight is a make shift pump room. Unlock the door with the key and go in and pump.
~ ha. Ya right. The first time I tried to go in while the nurse was showing me around there was already someone in there. Even the nurse was stunned on how they got in. The husband came to the door (with an attitude no less) and said that another unit said for them to come to this room, and if it was unlocked then to just use it. (so that just made the pump key irrelivent!)
~Also, that same couple (with attitude included) were in that room probably about half the times I tried to go and use the pump. I ended up finding a spare pump somehow and pumping in the visitors' bathroom no less. Ew.
~ And that make shift pump room was always gross from whoever used it for the overnight room.
Step 4: Take your pumped milk back to the nurse that is watching your baby and ask them go and put it in the freezer.
~ At Primary's we could just go put our milk in the freezer ourselves. Each baby was assigned a little tub to put the milk in so it wouldn't get mixed up with other babies'.
~At CHLA, I didn't have access to the freezer and felt like I was making the nurse go out of their way to go and put it away. There were even times I had to ask them a few different times to put it away because they kept forgetting.
That is one more entire reason I hate it here. It's not like I don't need to deal with anymore stress!
Gloves and Gown
Written 1-27-12
The reason we had to wear the gloves and gowns was because they do a MRSA test on all new patients. It doesn't matter where the patient is coming from or if they have some reason to think they would have it. They do it for all patients. And until they get the results of the test back and it is passed, the gloves and gowns have to be worn. blah
The reason we had to wear the gloves and gowns was because they do a MRSA test on all new patients. It doesn't matter where the patient is coming from or if they have some reason to think they would have it. They do it for all patients. And until they get the results of the test back and it is passed, the gloves and gowns have to be worn. blah
Draw! ....or not?
Written 1-27-12
After we got back to the hospital and allowed into the CTICU to see Tanner, my dad wanted to see if someone could explain the surgery options to me again in person since it was not easy to understand over the phone.
We spoke with a very nice lady (I can't remember exactly what she was... doctor, nurse, NP?) and asked her if she could explain everything to me again of what they are planning to do, and possibly draw me a picture like they did at Primary's.
She started explaining the surgery to me and I had to stop her because everything was going in one ear and out the other because I was already on information overload and couldn't comprehend anymore. My dad asked again if she could draw a simple picture so I could have it to look at when I was a little more coherent.
At that point she kind of looked at us like we were idiots and why did we want her to draw a picture? She said she wouldn't draw a picture, but would try to look something up on the computer to print up for me.
After a long time she finally came back with a few different papers. All of them with very intricate heart images on them. She said she couldn't find any images of exactly what they are doing, so she just pointed to the different parts and told me what their plan was. She didn't actually mark anything on the pages, so I couldn't refer back to them at a later time if I wasn't able to remember. So all of that was completely pointless.
Everyone was actually pretty surprised that I was picking up as much hospital lingo as I was in such a short amount of time. But that was only after I had a chance to relax a little bit and actually wrap my brain around everything.
Other than that, I am just so glad I had my parents there to translate and remember things for me.
After we got back to the hospital and allowed into the CTICU to see Tanner, my dad wanted to see if someone could explain the surgery options to me again in person since it was not easy to understand over the phone.
We spoke with a very nice lady (I can't remember exactly what she was... doctor, nurse, NP?) and asked her if she could explain everything to me again of what they are planning to do, and possibly draw me a picture like they did at Primary's.
She started explaining the surgery to me and I had to stop her because everything was going in one ear and out the other because I was already on information overload and couldn't comprehend anymore. My dad asked again if she could draw a simple picture so I could have it to look at when I was a little more coherent.
At that point she kind of looked at us like we were idiots and why did we want her to draw a picture? She said she wouldn't draw a picture, but would try to look something up on the computer to print up for me.
After a long time she finally came back with a few different papers. All of them with very intricate heart images on them. She said she couldn't find any images of exactly what they are doing, so she just pointed to the different parts and told me what their plan was. She didn't actually mark anything on the pages, so I couldn't refer back to them at a later time if I wasn't able to remember. So all of that was completely pointless.
Everyone was actually pretty surprised that I was picking up as much hospital lingo as I was in such a short amount of time. But that was only after I had a chance to relax a little bit and actually wrap my brain around everything.
Other than that, I am just so glad I had my parents there to translate and remember things for me.
Going to CHLA
Written 1-27-12
The doctors at Primary's told us that they do not currently have a "senior" surgeon since he had retired not too long ago due to him getting pancreatic cancer. All of the other surgeons were considered "junior" surgeons.
They said they could do the surgery, but felt more confident in sending us to a surgeon that had more experience and confidence. The main thing that the junior surgeons would not be completely confident about was the subvalvular stenosis. Everything else they would be good with.
So from my knowledge, the main reason we are going to a different hospital other than Primary's is because of the subvalvular stenosis.
(I also found out afterward that the other hospital could do everything in one surgery and not have to stage the surgery into 1 or 2 different ones. yay!)
The doctors at Primary's told us that they do not currently have a "senior" surgeon since he had retired not too long ago due to him getting pancreatic cancer. All of the other surgeons were considered "junior" surgeons.
They said they could do the surgery, but felt more confident in sending us to a surgeon that had more experience and confidence. The main thing that the junior surgeons would not be completely confident about was the subvalvular stenosis. Everything else they would be good with.
So from my knowledge, the main reason we are going to a different hospital other than Primary's is because of the subvalvular stenosis.
(I also found out afterward that the other hospital could do everything in one surgery and not have to stage the surgery into 1 or 2 different ones. yay!)
Sunday, February 6, 2011
Blessed
Written on 4-1-2012
After we got to Primary's Kollin and I really wanted Tanner to have a blessing to help him and us through this hard time.
My dad offered to do this and called his big brother, my Uncle George, to come up and join him.
They came in our room, stood on either side of his hospital bed and put their hugs hands on his little head.
It was so touching.
I remember crying through the whole thing.
I wish I had written about it the same day so I could have remembered what was said. I do remember that they blessed him with the strength he needed to be able to get through was was needing to be done.
After we got to Primary's Kollin and I really wanted Tanner to have a blessing to help him and us through this hard time.
My dad offered to do this and called his big brother, my Uncle George, to come up and join him.
They came in our room, stood on either side of his hospital bed and put their hugs hands on his little head.
It was so touching.
I remember crying through the whole thing.
I wish I had written about it the same day so I could have remembered what was said. I do remember that they blessed him with the strength he needed to be able to get through was was needing to be done.
Can we get dealt a good card please?
Written 1-27-12
After we got to Primary's, they gave Tanner a few different echos to take a look at things. At first we only knew about the coarctation. He was originally diagnosed with this at Jordan Valley before we were transported to Primary's.
After each echo it seemed like there was one more thing that they found. First it was the coarctation. Then they found two holes in his heart (ASD and VSD). THEN then found the subvalvular stenosis (also called sub-aortic stenosis (SAS)). It is hard to explain but from what I can understand it is one of the parts of the wall of his heart where one of the holes are, grew to the side and created a "flap." This flap is now almost blocking the aortic valve and needs to be removed or stitched back so that valve can get circulation and grow.
I remember Kollin asking me if we could please just get some good news and stop having all of these terrible cards dealt to us each time he has and echo!
After we got to Primary's, they gave Tanner a few different echos to take a look at things. At first we only knew about the coarctation. He was originally diagnosed with this at Jordan Valley before we were transported to Primary's.
After each echo it seemed like there was one more thing that they found. First it was the coarctation. Then they found two holes in his heart (ASD and VSD). THEN then found the subvalvular stenosis (also called sub-aortic stenosis (SAS)). It is hard to explain but from what I can understand it is one of the parts of the wall of his heart where one of the holes are, grew to the side and created a "flap." This flap is now almost blocking the aortic valve and needs to be removed or stitched back so that valve can get circulation and grow.
I remember Kollin asking me if we could please just get some good news and stop having all of these terrible cards dealt to us each time he has and echo!
This is a drawing of a diagram of Tanner's heart that one of the cardiologists drew for us to help us understand what was going on, and what needed to be done. I am so glad they did too since I could vaguely remember the different parts of the heart from Jr High or High School. The different colored arrows are the different issues going on. The BLUE arrows are the ASD and VSD. The RED arrow is the subvalvular stenosis. The GREEN arrow is the coarctation.
Diagnosis at Jordan Valley
Written 1-27-12
The first day after Tanner was born I met the on call pediatrician that had done his first checkup. He was Dr. Terashima and was very nice. He sat and spoke with me about Tanner, myself and Kollin, and also answered any questions I had.
After we had spoken for quite a while Dr. Terashima mentioned that there was one thing he was a little worried about. He mentioned that he could not feel Tanner's femoral pulses (the pulses in his legs). He said this could be an indication of something that could be wrong and that he wanted us to go to the NICU to have his blood pressure taken on both arms and legs to see if the numbers are comparable.
We went and did this and the numbers all came back just fine. I called my dad afterwards to let him know what happened and he explained that they were testing for a "coarctaion of the aorta." He said that it is a big indication that a baby may have a coarctation if you cannot feel their femoral pulses. That the part of the aorta where the coarctation usually is is right where the flow of blood would go to the lower extremities. So therefore, no pulse in the legs if there was a coarctation. Phew! Dodged that one!
Then the next day when we were getting packed up and ready to be discharged and go home with our new healthy baby, Dr. Terashima came back. He said that he was still worried about Tanner's femoral pulses and wanted his blood pressure checked again in the NICU. He said that he had found out that yesterday they had only taken his blood pressure in his arms and not his legs in the NICU. Then they compared the arm numbers from the NICU to the leg numbers from the system the use in the normal nursery. He said he didn't didn't like that and since it was two different systems, he didn't trust it.
So we went back to the NICU to redo the tests. This time there was a discrepancy in the numbers between the arms and the legs. It was a good possibility that Tanner had this coarctation that my dad told me about yesterday.
They kept him in the NICU and started hooking him up to IV's and started doing an echo. During this I started to freak out and both Kollin and I didn't know what was going on or what to do. I called my dad and told him that they are suspecting that Tanner actually does have that coarc- thingy that he told me about and that he is in the NICU and that they are poking him and prodding him and I don't know what's going on AAA!
Him and Gwen came right to the hospital to be there with us and helped translate what was going on to Kollin and me. While the NICU nurses were doing the echo Tanner was being a little fussy and I was too distraught to know what to do (also they wouldn't let me go near him). Somehow my dad was able to get in there and calm Tanner down by laying his hand on his head and speaking softly to him. I remember sitting in a chair a little ways away from the bed Tanner was in watching all of them and just feeling so grateful that my dad was able to be there with him since I couldn't.
Afterwards the NICU doctor pulled us into this room and explained that it was indeed a coarctation and that Tanner had to go to Primary's to have it fixed. At first they were hopeful that they would be able to just fix it by going through his umbilical chord depending on where the coarctation was and how big. (obviously that didn't happen)
So off we went to Primary's in an ambulance and we began the most terrifying few weeks of my life.
After all was said and done, we decided to stay with Dr. Terashima. Although he was just the on call doctor when Tanner was born, he still saved his life. If he wasn't as thorough as he was and came back to have him tested a second time, we all would have been so much worse off!
The first day after Tanner was born I met the on call pediatrician that had done his first checkup. He was Dr. Terashima and was very nice. He sat and spoke with me about Tanner, myself and Kollin, and also answered any questions I had.
After we had spoken for quite a while Dr. Terashima mentioned that there was one thing he was a little worried about. He mentioned that he could not feel Tanner's femoral pulses (the pulses in his legs). He said this could be an indication of something that could be wrong and that he wanted us to go to the NICU to have his blood pressure taken on both arms and legs to see if the numbers are comparable.
We went and did this and the numbers all came back just fine. I called my dad afterwards to let him know what happened and he explained that they were testing for a "coarctaion of the aorta." He said that it is a big indication that a baby may have a coarctation if you cannot feel their femoral pulses. That the part of the aorta where the coarctation usually is is right where the flow of blood would go to the lower extremities. So therefore, no pulse in the legs if there was a coarctation. Phew! Dodged that one!
Then the next day when we were getting packed up and ready to be discharged and go home with our new healthy baby, Dr. Terashima came back. He said that he was still worried about Tanner's femoral pulses and wanted his blood pressure checked again in the NICU. He said that he had found out that yesterday they had only taken his blood pressure in his arms and not his legs in the NICU. Then they compared the arm numbers from the NICU to the leg numbers from the system the use in the normal nursery. He said he didn't didn't like that and since it was two different systems, he didn't trust it.
So we went back to the NICU to redo the tests. This time there was a discrepancy in the numbers between the arms and the legs. It was a good possibility that Tanner had this coarctation that my dad told me about yesterday.
They kept him in the NICU and started hooking him up to IV's and started doing an echo. During this I started to freak out and both Kollin and I didn't know what was going on or what to do. I called my dad and told him that they are suspecting that Tanner actually does have that coarc- thingy that he told me about and that he is in the NICU and that they are poking him and prodding him and I don't know what's going on AAA!
Him and Gwen came right to the hospital to be there with us and helped translate what was going on to Kollin and me. While the NICU nurses were doing the echo Tanner was being a little fussy and I was too distraught to know what to do (also they wouldn't let me go near him). Somehow my dad was able to get in there and calm Tanner down by laying his hand on his head and speaking softly to him. I remember sitting in a chair a little ways away from the bed Tanner was in watching all of them and just feeling so grateful that my dad was able to be there with him since I couldn't.
Afterwards the NICU doctor pulled us into this room and explained that it was indeed a coarctation and that Tanner had to go to Primary's to have it fixed. At first they were hopeful that they would be able to just fix it by going through his umbilical chord depending on where the coarctation was and how big. (obviously that didn't happen)
So off we went to Primary's in an ambulance and we began the most terrifying few weeks of my life.
After all was said and done, we decided to stay with Dr. Terashima. Although he was just the on call doctor when Tanner was born, he still saved his life. If he wasn't as thorough as he was and came back to have him tested a second time, we all would have been so much worse off!
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