Some good news.

Today we went for another ultrasound and to check if Logan has a spleen. As I mentioned before, lacking a spleen is sometimes associated with dextrocardia.  As the tech took her measurements and labeled everything she never mentioned finding or seeing the spleen, but after, when we sat down with the doctors sure enough, in the notes, he has a spleen. We are so relieved. His defects are isolated to his heart only. Everything else looks great, it's all in the right spot and the right size. They estimate he weighs 6.11 right now, which, from what I've read, the estimates aren't very accurate, but we're hoping it's right. We want him to be as big as he can be before he makes his debut into this world. The bigger he is the better his chances if he needs surgery immediately after birth.

We then had our tour of the NICU. It really started to sink in that that is going to be our lives for an undetermined amount of time. It is scary. I am scared. Not because I don't have faith in the doctors, but because we have no idea what's going to happen. All of our questions can only be answered hypothetically. Which leads to more questions, and more possible scenarios. The worse part about all of this is knowing he has a serious health issue and having absolutely no idea what he is going to have to endure after he's born. People tell us we're lucky to know ahead of time, and sure, we are, but just because we are aware doesn't mean we can prepare. We have no idea how long it will be before he needs surgery, no idea how long he will be in the NICU. We can't plan for babysitters for Corbin because we have no idea when he will need to be watched. We will have to throw everything together after Logan is born, almost as if we never knew ahead of time.

Anyway,  the NICU was nice, the people we met were great. There are so many faces and names it's overwhelming, but it's all for the best. My appointments are weekly now for the last 4 weeks. I don't believe we will have any more ultrasounds. We haven't scheduled our induction yet, the nurse said we would solidify a date in about 3 weeks. We're planning on the morning of July 17th. We shall see.

I'm not sure if I'll have anymore updates after this one until he is born. My appointments are going to be pretty routine and I don't think we will get any new information. Now we just wait. We can't wait to meet him!

Follow up - Echocardiogram

I'm not sure if anyone is following us quite yet, but here is an update if you are. Not much of an update, which is good, actually. We had an echo today, with no new findings. Unfortunately, nothing has improved either, but nothing has worsened. We sat with the cardiologists, and asked about possible scenarios after the baby is born. It's all unknown. It is completely dependent on how Logan's heart works on it's own. We may get to hold him for a half hour after he is born before they take him away to monitor him, we may only be able to see him for a few minutes before they whisk him away. They don't know if he will need immediate surgery, or any procedures immediately, or if they will be able to wait because he can stabilize himself. All of these unknown factors kill me and make my mind constantly run, and wonder, and worry. I know he will be in good hands, and I know we are lucky that we get to know there is something wrong ahead of time, but it doesn't change the fact that it WILL be happening, and we have NO idea how he is going to manage on his own, before interventions.
After our echo appointment, we had an appointment with our prenatal care providers. After researching the most current diagnosis of Dextrocardia, I found that it is common for children with this defect to also have a missing spleen. I asked if it was seen in any other ultrasounds, and the doctor was unable to see if anything was said about it, but that doesn't mean it wasn't there. In fact, it gave me hope that it IS there, because you'd think they'd notice it missing. We will have an ultrasound on the 19th, and the doctor made a note to specifically check for the spleen. That is one piece of the puzzle I am really hoping is in place. If not, it opens a whole new world of problems for our little guy, and a harder road. Fingers crossed.
All in all, it was a good appointment. Long, but good, no news is good news.
Our next appointment is on the 19th for an ultrasound, a tour of the NICU and to meet with the neonatal team. We will also schedule our induction date. Can't wait to meet this little trouble maker of ours.

Ultrasound

Well, we had our meeting with our new high risk doctors today,  and the wait time in that office is terrible. That will be fun to deal with the rest of the pregnancy. We had an ultrasound first. The tech was super friendly and explained everything to us as she looked at it and took pictures. It was nice to be informed that all of his internal organs were there and normal. She looked at of his heart for a long time, so they can have a better idea of what they are dealing with since they are our new providers.  She had some trouble with the orientation of the heart and seemed confused but we all laughed it off and made jokes about it.
Once we were done we were sent back to the waiting room to wait for the doctor. Eventually we were called back. We sat down and waited, optimistically. She came in and introduced herself, she asked what our understanding was of what was going on. We briefly explained our viewpoint. She then explained that sometimes heart defects can be secondary to other defects. We were then told that everything else looks good. We were relieved!
However, his heart is on the wrong side of his body. Instead of being on the left side, it's oriented on the right side. A mirror image, is how it was explained. A very rare anomaly.  She explained that typically this doesn't pose any immediate threats to the baby. Thankfully. We will learn more about it on June 3rd when we have another echo and meet with the cardiologists.
We are expecting to be induced at 39 weeks.

I'll update more after our June 3rd appt.

Coping

Now what? We were just delivered news that our unborn baby needs heart surgery. It's scary. We can't be the only ones. My quest began to find other mothers that have gone through what we are about to endure. I have always been one to want to educate myself as much as I can on a subject that is personal to me.

Although congestive heart defects (CHD) aren't very rare, there are so many variations of different defects that can make certain cases more rare than others. I wasn't sure if I would be able to find someone with our same diagnosis.  I searched and searched. I was able to find a group of moms on a website that have children with CHD. Although many have different diagnosis their journeys are similar. It helped to read their stories and positive outcomes, it helped me to be more optimistic. 

It also lead me here. To this blog.  I've never read as many blogs as I do now. I wanted to be a part of the coping process so I decided to write about our journey in hopes it will help ease someone's anxiety that are going through the same thing.

Not only that, but between my husband's large family and our group of friends, I figured this will be the easiest way to keep everyone updated.

Our next appointment is May 21 with our high risk doctors along with a more in-depth ultrasound to be sure there arent any other issues as sometimes CHD is associated with other defects. We then meet our new doctors.

11 weeks to go before we meet our little warrior.

The beginning

At 20 weeks pregnant we went for the ever exciting anatomy ultrasound. We found out we were having a little boy and we enjoyed seeing him on the screen. The ultrasound technician was amazing, but our son was stubborn and she couldn't get a good view of his heart. She knew that parents to be enjoyed having ultrasounds so instead of trying to get a good picture, we were scheduled to come back in a few weeks. We didn't mind one bit! 

4 weeks later we arrive for our second ultrasound, luckily, our little guy is in a good position to get a few pictures. It was a quick appointment, as we were only there for one purpose. Once we were done we were sent to a patient room, as usual, to wait for the good word that everything was okay. The doctor came in and told us that there was a possibility that our little Logan may have what is called Transposition of the Great Arteries. What this means is that the two main arteries leading to and from the heart are in opposite places and would need to be switched shortly after birth. He said that it wasn't a definite, but just to be sure he wanted us to have an echocardiagram done. We left the office with many unanswered questions, and the possibility of facing a long journey, but we were optimistic. 

After our echocardiagram appointment we waited in the conference room hoping for the best. When we saw the doctor he was very friendly and asked us about ourselves and he discussed why we were there. Then I heard him say the most devastating word, "unfortunately". Unfortunately our baby had many issues with his heart. I was devastated. I tried to hold back my tears and concentrate on what he was explaining to us. Logan not only had what we expected, the Transpostion of the Great Arteries (TGA), but he also had Pulmonic Stenosis, a narrowing of the pulmonary artery, Double Outlet Right Ventricle (DORV), both arteries are coming off of the right ventricle, a hole in his heart, (Ventricular Septal Defect, VSD) common with TGA and DORV. It was hard to hear, and even though my husband and I both have medical backgrounds it was still difficult to comprehend all of the medical jargon thrown our way.  

He explained to us what our upcoming journey may include. Open heart surgery is inevitable, along with many other procedures on his little heart. The Dr. explained that he has a very complex heart and there are many variables that could change the plan of action, nothing would be for sure until after he was born and the cardiac team could get a better look at his heart. We left the appointment completely unsure of what our future has in store for us. 

The picture on the left is of a normal heart, the picture on the right is baby Logan's heart. Or at least an idea of what his heart looks like as of right now.