We were scheduled at 10:30 for a fetal echo cardiogram and then to consult with Doctor James Cnota. We got there a little early, but they were running right on time and got us in our room fairly quickly. The echo cardiogram took a long time, but prayers were answered in that the baby was rather still and they were able to get all of the images and information that they needed. Several ultrasounds in the past have been challenging because of the baby's position, or the fact that he was moving a lot. When the woman performing the echo was finished, she said she would go and consult with Dr. Cnota and that he might want to come and take more pictures. After about 10 or 15 minutes, they both came back and he did take another 15 minutes worth of pictures. He was very kind and personable. After he took all of the images he wanted, he sat and talked with us for at least 45 minutes or so, explaining all of their findings. We had a new diagnosis.
Dr. Cnota told us that the baby definitely has heart abnormalities, but he didn't feel that is was actually HLHS. The left side of his heart is a bit smaller, but not significantly. The problem is actually his aorta. He has what is called, Severe Coarctation of the Aorta with aortic arch hypoplasia. So, his aorta is too narrow, which is a problem, because it is the main blood vessel carrying oxygen-rich blood from the left ventricle of the heart to all of the organs of the body. The doctor feels that once the aorta is fixed, the left side of his heart will be strengthened in time. There are also some other abnormalities. The mitral valve and aortic valve are mildly smaller than normal, but he can see that there is blood flowing through them that seems enough. There is also a small hole between the left ventricle and right ventricle in the lower ventricular septum of the heart. Dr. Cnota feels that the heart muscle will heal the hole on it's own.
So, the main issue is repairing the aorta. There are a few ways to do this, and they will not know which technique they will use until after he is born and able to do an echo cardiogram on him without the barrier of being in the womb. Once it is determined exactly what they need to do, they will perform open heart surgery within 3-7 days of birth. There is still a chance that there could be more undetected issues that they find after birth, of course, but the doctor was confident in this new diagnosis. The news changes things. He should only need one surgery now, instead of three. The recovery time should be shorter, as long as there are not any complications. I am excited that I should be able to nurse him within a few short weeks. His long term prognosis is better.
We are grateful that the doctor was able to see so much during the echo and really determine what our little guy will need. We have all the details to work out still. We loved it in Cincinnati, they were so kind and accommodating--they even squeezed in a tour of the facility for us, but we are still going to go to Kosair and compare. We have heard wonderful, amazing things about the surgeon here in Louisville, so if we tour and feel confident in the post-op care, we might just stay close to home. We did like the idea of having a Cardiac Intensive Care Unit (CICU) in Cincinnati, but we want to give Kosair a chance to show us what they can do in their NICU. One of the biggest things we have to talk about in our decision is the delivery. My delivery with our oldest child was a C-section. Both of the other kids were VBAC (vaginal birth after cesarean). I am told that I should still be able to have a VBAC, but I am not able to be induced, typically. With the scar on my uterus, I am at extra risk and am only supposed to go into labor on my own, as opposed to inducing with medication. So, if I was to deliver in Cincinnati, I would have to basically move up there a few weeks before delivery and wait to go into labor on my own, because of the distance. If I deliver in Louisville, I would just be able to wait and go on with my normal routine until labor comes. So, we just don't know what we will do yet. I still need to talk to other doctors and make these decisions.
Wherever we deliver, we are positive about the new diagnosis. It is still terrifying to think of your brand new baby being cut open and having open heart surgery, but we have faith and hope that things can work out for our son. Thank you for your continued prayers and support! It has helped us through a rough couple of weeks!
If anyone is curious and wants to check out more information, Cincinnati has some great explanations and videos at: http://www.cincinnatichildrens.org/patients/child/encyclopedia/defects/coarctation/
If anyone is curious and wants to check out more information, Cincinnati has some great explanations and videos at: http://www.cincinnatichildrens.org/patients/child/encyclopedia/defects/coarctation/
The Lord will continue to guide you in your decisions as to which direction you should go! You have a lot of faith and you are blessed for it! There are a lot of special, miracle, spirit's coming to earth in these latter days! My Love and Prayers
ReplyDeleteWhat I have learned, taking care of a husband with several scary diseases is that if you listen, the spirit will help you carry the burden. Listen, closely. This is a major decision. Do what the spirit says. Heavenly Father knows where your little one should be born and who should do the surgery. You are in my prayers and I'll keep your name on the prayer roll in the Houston Temple. I know you don't know me, but I'm your dad's cousin and love him and your mom. So I love you too.
ReplyDeleteThank you for sharing all this! I know it's silly but I love learning about all things cardiovascular. I had small hole in my heart that opened sometime after birth and was part of a research project that has changed the way they do the repairs. I am grateful for the blessed hands and learned minds that help counsel and console those in need. I was the oldest person in the project (13) and I am the only living patient with the device used for the repair at that time. My life was blessed because my mom battled for me. She battled the doctors, my family and the insurance companies. Never give up hope and never lose faith. It went from open heart surgery, to being placed on the heart replacement list to a same day surgery done through my leg. God be with you.
ReplyDeleteLaura, one of my girls had a baby with only 2 umbilical tubes and was told that it was good to get as close to the due date as possible to get the baby as strong as possible. Her baby did not have any organ complications so they let her go into labor. However, they ended up having to do an emergency !!! c-section after all because the baby just could not stand the stress of the delivery. Knowing what happened with her, and knowing your baby's heart condition, I would not even consider a v-back. I would recommend the c-section shortly after you go into labor. Prayers & best wishes. PS - I'm a friend of your mom. :-)
ReplyDeleteThe Stoddard and Anderson family have you in their prayers and thoughts and your name is in the Logan temple. We love you
ReplyDeleteHoping that you will feel "carried" as you go through the challenging days ahead! Our little family will definitely be praying for yours!!! XOXO
ReplyDelete