...turns out to be a very DIFFERENT opinion and one that was fabulous to hear :)
We met with Dr. Rios from Children's Hospital today. We absolutely LOVED him, and not just bc he gave us better news, but because he was so friendly and easy to talk to. He explained each problem of her heart in a way that was so clear to us. We laughed bc he kept referring to her valves as "canteen" doors. It was references like that which were not only funny but so easy for us to understand. (I told Angie yesterday that I was considering going out to get the book "Anatomy & Physiology of the Heart for Dummies." It is so confusing and we so badly want to understand every single thing about it!)
Anyway - After explaining each problem, he would say "no big deal...we see "boatloads" of these. And would continue on with the next explanation. I laughed at the term "boatloads" but he said that about each defect and it was very comforting to hear :)
He then explained that her first surgery would be within the first few days of life, the next at 4 months, and then the last at 3 years. He also explained these procedures cleary and, again, said they do "tons" of these procedures and made them seem like they were "no big deal."
We then, after waiting and waiting for him to say something negative, asked him what he thought her chances are for making it to birth. He said that since she is now already 21 weeks, he would be surprised if she did not make it. I think the blank stares from us signaled to him that Dr. Shanti gave us much different information. We told Dr. Rios that Dr. Shanti's statistics were much lower (10-15% ) and he said they truly do not know because our baby's problems are so rare, but most babies with major heart defects who do not make it to birth die much earlier than 20 weeks. He did say that, yes, her heart is in "bad" condition, but they are not recommending termination because if she does make it, it is fixable. He also said that yes, it's bad, but we have a lot of things going for us (one thing is that it is good that it is the right ventricle that is underdeveloped...but we cannot remember "why.") I think his point was that her heard could actually be even worse which was oddly enough good to hear :)
Despite the great news we heard today, we now feel like we are in such a difficult position and feel like we need a third opinion since these two are so different. Dan asked Dr. Rios what he would do and we all started laughing! He said that he obviously feels that Children's Hospital is phenomenal...but that the University is wonderful, too. A few things that Dr. Rios said that sets them apart is the volume of pediatric heart cases at Children's, the long term staff members at Children's, and the fact that they are there just to care if kids (vs. research, etc).
So I think for now we are going to go see Dr. Shanti for our echo tomorrow but also schedule a diagnositc echo with Dr. Rios for an "official" 2nd opinion (with the understanding that yes, he did read the full report, but he may find something different after his echo that may trigger him to be less positive..which we are obviously hoping against!)
I was in contact with Mayo today and we are considering going there for a 3rd opinion. We also have good friends (The Smyths) who are helping us get in contact with Pediatric Cardiologists at Children's Hospital in Boston (thank you!!). Hopefully by tomorrow we will have a copy (CD) of our echo from Dr. Shanti and we have an electronic copy of our record from the U so hopefully it will be easy to get a 100th opinion from other Cardiologists :)
We also joined a yahoo group for congenital heart conditions and we have received SO much information and guidance from families who have been in similar situations and have also met with an amazing psychologist who we really liked and found to be very helpful. She not only has gone through what we are going through, but she is very great to talk to and happens to be super funny....so we loved her, too :)
I have to say, after ending our 5th day in our fight for our precious little girl...we are finally exhausted. With the good news we received today, I think we will both sleep soundly tonight. I am not sure what tomorrow brings, but am going to hold on to every positive word we heard this afternoon and will go to bed with a little bit more HOPE tonight. We cannot thank you all enough for the heartfelt voicemails and emails that you have sent us. I am actually in tears as I write this because I feel so blessed to have you all in our lives and cannot imagine going through this without each of you.
Love,
Alli, Dan, Jack and Rufus
ps - Again, I am sure this is far more information that you care to read...but we are just too tired tonight to cut/paste/retype :)
We met with Dr. Rios from Children's Hospital today. We absolutely LOVED him, and not just bc he gave us better news, but because he was so friendly and easy to talk to. He explained each problem of her heart in a way that was so clear to us. We laughed bc he kept referring to her valves as "canteen" doors. It was references like that which were not only funny but so easy for us to understand. (I told Angie yesterday that I was considering going out to get the book "Anatomy & Physiology of the Heart for Dummies." It is so confusing and we so badly want to understand every single thing about it!)
Anyway - After explaining each problem, he would say "no big deal...we see "boatloads" of these. And would continue on with the next explanation. I laughed at the term "boatloads" but he said that about each defect and it was very comforting to hear :)
He then explained that her first surgery would be within the first few days of life, the next at 4 months, and then the last at 3 years. He also explained these procedures cleary and, again, said they do "tons" of these procedures and made them seem like they were "no big deal."
We then, after waiting and waiting for him to say something negative, asked him what he thought her chances are for making it to birth. He said that since she is now already 21 weeks, he would be surprised if she did not make it. I think the blank stares from us signaled to him that Dr. Shanti gave us much different information. We told Dr. Rios that Dr. Shanti's statistics were much lower (10-15% ) and he said they truly do not know because our baby's problems are so rare, but most babies with major heart defects who do not make it to birth die much earlier than 20 weeks. He did say that, yes, her heart is in "bad" condition, but they are not recommending termination because if she does make it, it is fixable. He also said that yes, it's bad, but we have a lot of things going for us (one thing is that it is good that it is the right ventricle that is underdeveloped...but we cannot remember "why.") I think his point was that her heard could actually be even worse which was oddly enough good to hear :)
Despite the great news we heard today, we now feel like we are in such a difficult position and feel like we need a third opinion since these two are so different. Dan asked Dr. Rios what he would do and we all started laughing! He said that he obviously feels that Children's Hospital is phenomenal...but that the University is wonderful, too. A few things that Dr. Rios said that sets them apart is the volume of pediatric heart cases at Children's, the long term staff members at Children's, and the fact that they are there just to care if kids (vs. research, etc).
So I think for now we are going to go see Dr. Shanti for our echo tomorrow but also schedule a diagnositc echo with Dr. Rios for an "official" 2nd opinion (with the understanding that yes, he did read the full report, but he may find something different after his echo that may trigger him to be less positive..which we are obviously hoping against!)
I was in contact with Mayo today and we are considering going there for a 3rd opinion. We also have good friends (The Smyths) who are helping us get in contact with Pediatric Cardiologists at Children's Hospital in Boston (thank you!!). Hopefully by tomorrow we will have a copy (CD) of our echo from Dr. Shanti and we have an electronic copy of our record from the U so hopefully it will be easy to get a 100th opinion from other Cardiologists :)
We also joined a yahoo group for congenital heart conditions and we have received SO much information and guidance from families who have been in similar situations and have also met with an amazing psychologist who we really liked and found to be very helpful. She not only has gone through what we are going through, but she is very great to talk to and happens to be super funny....so we loved her, too :)
I have to say, after ending our 5th day in our fight for our precious little girl...we are finally exhausted. With the good news we received today, I think we will both sleep soundly tonight. I am not sure what tomorrow brings, but am going to hold on to every positive word we heard this afternoon and will go to bed with a little bit more HOPE tonight. We cannot thank you all enough for the heartfelt voicemails and emails that you have sent us. I am actually in tears as I write this because I feel so blessed to have you all in our lives and cannot imagine going through this without each of you.
Love,
Alli, Dan, Jack and Rufus
ps - Again, I am sure this is far more information that you care to read...but we are just too tired tonight to cut/paste/retype :)
No comments:
Post a Comment