We weren't able to meet with the Fetal Cardiologist until Thursday. It was a long few days of waiting and we didn't want to read much on the internet because there are so many scary horror stories. We wanted to wait and get our information from the doctor to make sure it was a reliable source. When I got there, they did an echocardiogram on our baby's heart. It's amazing to me that they can do something like that on a baby that is inside me. When we met with the doctor afterwards she explained exactly what was going on. She started out by showing us a diagram of a normal working heart and explained how the heart works. I must have missed that part of health class because I had no idea how complex it all was. I still don't understand it all, but I get the basics which for now is what I'm concerned with. After she explained the normal heart, she showed us a diagram of what our baby's heart looked like. The right ventricle was there but basically never really developed. She said there was a lot of blockage on the right side of the heart and also the main artery that pumps blood out of the right side of the heart into the lungs was blocked. She then explained what they will need to do to fix all of that. Right after he is born, they will give him medicine to keep his patent ductus open. That is a part of the heart that is open throughout pregnancy but usually closes within the first few hours/days after birth. They need to keep this open so blood has a way of getting through the heart since it won't be able to get through the right side of his heart. The right side of heart intakes the poorly oxygenated blood from the body and pumps it to the lungs to get oxygen. Then, the blood is pumped into the left side of the heart where it is then delivered to the rest of the body from the left side of the heart. Our little boy will have open heart surgery within the first week of life to create a temporary shunt that will deliver blood to the lungs. He will then have another surgery at 6 months were they will put in a permanent shunt that will grow with him. At 3 years he may need another surgery, but they will watch him and monitor him to see if he needs it or not. After all of the surgeries, they will basically make the right side of his heart obsolete. Blood will be pumped through the shunt straight to the lungs and then delivered to the left side of his heart. The first surgery is the riskiest. There is an 85% success rate. I know that's good, but that still leaves a 15% chance that our little man won't make it. I'm trying to have faith in that 85% but I'm scared to death to send him away for that first surgery.
We were able to get a lot of our questions answered and here is what we know so far. After he is born, he will stay in the NICU until his heart surgery. After the surgery he will stay in the cardiac unit of the hospital for a few weeks until he's ready to go home. The same thing will happen at 6 months when he has his 2nd open heart surgery. I do have to switch doctors at some point so I can deliver at the hospital he will have the surgery at. I'm not too excited about that, but obviously, I'll make that work. He will probably never be able to nurse because nursing is harder on the baby and makes them work harder. I'm bummed about that too. Not only because I won't be able to nurse him, but because formula is ridiculously expensive. I'm sure I'll pump for a while if I can't nurse, but I know me, and I know I won't pump for a year. She told us no contact sports, no wrestling, no aerobics or track and field. Nothing that will make his heart work too hard. She said golf and baseball are sports he can probably play which Tagg was excited about! He will be on heart meds his whole life and he will need to be seen by a cardiologist his whole life as well. One thing I found interesting was that he will always need to see a pediatric cardiologist. A regular cardiologist deals with heart problems that are onset later in life. Not ones that people are born with. I guess you handle things differently when it's something you're born with. Overall he should be able to live a normal life which is a relief. After we found out about his heart condition we had quite a few people tell us of family members or friends who have kids with this same condition but it was always on the left side. It made is feel a little better to know that kids who have this on the left side are living normal lives for the most part but I also didn't know how similar the left and ride side would be. We found out that this syndrome on the right side is much less common but that it's actually better that it's his right side. In a normal heart the left side of the heart has to be stronger and work harder so it will be easier to make a fix for the right side of the heart than the left side of the heart. Again, we felt some relief knowing that. She told us that a heart transplant is a possibility at some point but not a definite. Also a relief. She also told us that once a child is 6 or 7 they can receive an adult heart. I found that very interesting. Apparently you can receive a heart that is 3 times the size of your heart. It is much harder to get a transplant as a baby because baby hearts are just not really available. Once they reach 6 or 7 though, they have many more options to be able to receive a heart. She told us that this in not a hereditary thing. It just randomly happens. The heart simply just didn't develop all the way. We feel very blessed to live in this time where there are so many amazing medical advances that will hopefully make it possible for our baby to live a long life. The cardiologist said that even 20 years ago, babies would've died from this.
Overall, we are doing pretty good with everything. If I think too much about all the possibilities I get really overwhelmed. I try to take it a day at a time but it's hard to not think about all the future might hold. This definitely won't be a typical delivery and it will be so hard to leave the hospital and not bring our little man home. I'm not sure exactly what NICU life is like, but I know that it's very structured. It will be hard to not snuggle and hold him as much as I want, but I just need to look at the big picture and realize all of this will be for his survival. I'm grateful we were able to figure this out now so that we can be prepared and the doctors can make all the necessary arrangements before he is born. I still pray for a miracle, but I take comfort in knowing that no matter what happens, this is God's plan for our little one. At the same time, that scares me. It doesn't matter if we have the most skilled and amazing doctors performing the surgeries. If Heavenly Father's plan for this spirit doesn't include him living a long life here on Earth, he won't. No doctor will be able to change that.
I go back to the doctor and Tuesday and hopefully we will get the results back from the genetic testing. Fingers crossed that nothing comes up and that hopefully these two issues (the heart and the umbilical cord) are all we need to deal with.
Thank you so much for your thoughts, prayers, and kind words. It means so much to have such a great support system as we face this new trial.
We were able to get a lot of our questions answered and here is what we know so far. After he is born, he will stay in the NICU until his heart surgery. After the surgery he will stay in the cardiac unit of the hospital for a few weeks until he's ready to go home. The same thing will happen at 6 months when he has his 2nd open heart surgery. I do have to switch doctors at some point so I can deliver at the hospital he will have the surgery at. I'm not too excited about that, but obviously, I'll make that work. He will probably never be able to nurse because nursing is harder on the baby and makes them work harder. I'm bummed about that too. Not only because I won't be able to nurse him, but because formula is ridiculously expensive. I'm sure I'll pump for a while if I can't nurse, but I know me, and I know I won't pump for a year. She told us no contact sports, no wrestling, no aerobics or track and field. Nothing that will make his heart work too hard. She said golf and baseball are sports he can probably play which Tagg was excited about! He will be on heart meds his whole life and he will need to be seen by a cardiologist his whole life as well. One thing I found interesting was that he will always need to see a pediatric cardiologist. A regular cardiologist deals with heart problems that are onset later in life. Not ones that people are born with. I guess you handle things differently when it's something you're born with. Overall he should be able to live a normal life which is a relief. After we found out about his heart condition we had quite a few people tell us of family members or friends who have kids with this same condition but it was always on the left side. It made is feel a little better to know that kids who have this on the left side are living normal lives for the most part but I also didn't know how similar the left and ride side would be. We found out that this syndrome on the right side is much less common but that it's actually better that it's his right side. In a normal heart the left side of the heart has to be stronger and work harder so it will be easier to make a fix for the right side of the heart than the left side of the heart. Again, we felt some relief knowing that. She told us that a heart transplant is a possibility at some point but not a definite. Also a relief. She also told us that once a child is 6 or 7 they can receive an adult heart. I found that very interesting. Apparently you can receive a heart that is 3 times the size of your heart. It is much harder to get a transplant as a baby because baby hearts are just not really available. Once they reach 6 or 7 though, they have many more options to be able to receive a heart. She told us that this in not a hereditary thing. It just randomly happens. The heart simply just didn't develop all the way. We feel very blessed to live in this time where there are so many amazing medical advances that will hopefully make it possible for our baby to live a long life. The cardiologist said that even 20 years ago, babies would've died from this.
Overall, we are doing pretty good with everything. If I think too much about all the possibilities I get really overwhelmed. I try to take it a day at a time but it's hard to not think about all the future might hold. This definitely won't be a typical delivery and it will be so hard to leave the hospital and not bring our little man home. I'm not sure exactly what NICU life is like, but I know that it's very structured. It will be hard to not snuggle and hold him as much as I want, but I just need to look at the big picture and realize all of this will be for his survival. I'm grateful we were able to figure this out now so that we can be prepared and the doctors can make all the necessary arrangements before he is born. I still pray for a miracle, but I take comfort in knowing that no matter what happens, this is God's plan for our little one. At the same time, that scares me. It doesn't matter if we have the most skilled and amazing doctors performing the surgeries. If Heavenly Father's plan for this spirit doesn't include him living a long life here on Earth, he won't. No doctor will be able to change that.
I go back to the doctor and Tuesday and hopefully we will get the results back from the genetic testing. Fingers crossed that nothing comes up and that hopefully these two issues (the heart and the umbilical cord) are all we need to deal with.
Thank you so much for your thoughts, prayers, and kind words. It means so much to have such a great support system as we face this new trial.
3 comments:
Katie, thank you for sharing all of this. You guys are on my mind a lot and in my prayers. You have a good outlook on all of this. It is a blessing to know in advance so that you can become educated and so the doctors can prepare. In the meantime, we wait to see how this little man's story will unfold. Keep the faith that you have, that is what will get you through. Heavenly Father is aware and will watch over you and this precious little boy. Love you so much.
Katie I've been thinking so much about you! This little boy is so special and is prepared to face the challenges ahead of him. I'm so sorry that this delivery and the weeks (months etc) after will be difficult. I know what it's like to leave the hospital without my baby and it is hard no matter what is happening.
If anyone can handle this, it is you and Tagg. You have so much faith and understanding that it is out of your hands. We pray for you everyday, for Katie's baby far away. We will walk with you and support you as much as we can.
I wrote a comment a few days ago but I wasn't logged in and it didn't save it. I'm so sorry that your pregnancies have to be so stressful. But we are continually praying for this little man to make it here safely and that everything will go well after he's born. We love you all so much! I know that the lord loves you and I know he is a God of miracles! Prayers for baby boy and for your peace of mind as well. Love you guys!
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