Ramblings of a Heart Mom

I have no answers, just a million questions.

We got the second opinion email today. I have learned to expect nothing. I was growing to accept that my son my live a life with a single ventricle heart. 

I sent his file via fed-ex 3 day shipping late the 14th. So it wasn’t going to ship till the 15th and it wouldnt arrive till the 19th. They told me to expect it to take two weeks to get a response. Its only the 24th and I got the email. 

Upon opening it I felt like I won the lottery. You know how you read in your head faster than  you do aloud? Well I was reading it aloud to Nick but was ahead of what was coming out of my mouth. I could barely get the words out. 

“After review of these studies, it is my opinion that a biventricular repair is indicated at this time. The catheterization shows a well functioning left ventricle with normal pressures.”

Did I just read what I thought I did? THAT SAYS ITS TRUE! My prayers are answered. My wishes are coming true. 

But wait….Boston is 2959 miles away. I googled that ish!

How am I going to do this?

Let me share another line of the email….

“I see no reason to delay this approach.”

Wait, wait, wait!!!

I was having to accept that surgery was happening way before than I thought, then I was having to accept that no it wasnt happening and the surgery we thought was happening wouldnt happen either, now I have to accept that it is indeed going to happen and its going to be thousands of miles away from home.

Im pregnant. 30 weeks. 10 weeks to go. 

I’m trying to figure out where to go from here.

First things first, I have to make sure that Carson’s medical insurance will cover him having this done in Boston. 

Then I have to figure out when is this surgery going to take place, when is the ideal time. You see Carson has had this hole between his ventricles that was basically so big his ventricles had almost no separation. Now, the hole is starting to get smaller. This changes the anatomy of his heart and eventually can change the pressures, which could potentially make things more difficult. Not only that, did I mention Im pregnant? So when is this going to take place and how the heck am I going to handle having a new born while my oldest is having open heart surgery? 

You know Carson was born via cesarean. Just because I had a cesarean with him does not mean that I have to have one again. However, not all hospitals or OBGYN’s will allow you to have a VBAC or vaginal birth after cesarean. I have had a hell of a time trying to find one that meets my needs and wants. I finally found a place in Los Angeles that allows VBACs however I have had a couple bad experiences. The final straw was a call from the health department saying that Carson and I had been exposed to TB while at one of my appointments. Im sick of fighting my insurance and doctors to find a truly VBAC supportive practice, so I decided to plan a home birth. I believe a womens body was made to do this. Babies are far smarter than we give them credit for and I believe that I can and will do this. One problem is that insurance does not cover homebirth. It’s something I have to pay for out of pocket. I have had half of my tax return put away, that is all the savings I have. Now I cannot justify paying out that much money when I know we are going to Boston. 

I feel like a rock in a hard place. 

Being a parent is about making sacrifices. How do I sacrifice one child over the other? How do I decide the birth I want vs Caron’s needs? How do I plan for something I dont have any answers for?

I dont know how long recovery will be for him, I dont know when surgery will be, I dont know how much money we are going to need to get to and from Boston, how long we will be there, where we will stay, how I will juggle Alison and Carson. I feel like I dont know anything.

I do know that this is the surgery that will give Carson the best quality of life, I do know that I will do whatever it takes to make this happen. I do know that things are in God’s hands. I do know that things will work out just the way they are supposed to. I do know that Alison chose  me, she chose us, she chose this family and she will love her brother through all of this just as much as we will. I do know that I have a super supportive, amazing family. I do know that this paragraph is longer than the I dont knows and I do know that for that I am grateful!

Please pray for us!!! Im sure all my questions will have answers eventually. Thank you everyone for your support and love! I know people want to know how they can help. Thank you! For now I need to make sure insurance will cover the surgery. After that I will share a fundraising page for anyone that wants to help. Thank you again! We love you all!! Your prayers are working, they have been, and they will continue to do so ❤


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