Sunday, September 11, 2016

Unwillingly Becoming a Heart Mom

31 Weeks. At 31 weeks, you are supposed to mostly be in the clear, as far as all the “big issues” go. You’ve already made it through the first trimester. You’ve already made it through the big anatomy scan, which is nerve-wracking enough as it is. When you are done with that, and all has been marked as being developmentally normal, you just try to make it through the third trimester and all its uncomfortable nuances.
At 31 weeks, after attending a routine scan to follow a low risk kidney issue marked on our son’s 20 week anatomy scan, we were thrown for a loop as the sonogram technician spent way too much time watching our baby’s heart. As soon as she left, I turned to my husband and said, “Something is wrong. They never watched his heart for that long before.” But what could possibly be wrong now that wasn’t seen on the previous five ultrasounds?
We learned shortly thereafter that our son had some sort of defect with the right side of his heart. The Maternal Fetal Medicine doctor didn’t want to say too much about it, I suspect, because she didn’t know too much about it. We had to wait a whole week to be sent to the pediatric cardiology team at Johns Hopkins to find out that our baby had a very rare defect called Tricuspid Valve Dysplasia, and that everything that had been smooth sailing for the past eight months was to be thrown right out the window.
Tricuspid Valve Dysplasia means that his tricuspid valve, between the right aorta and right ventricle, is allowing blood to flow backwards between the two chambers. It should only be going in one direction, and that is through his pulmonary artery and into his lungs. Right now, it is classified as a “moderate” regurgitation...but this can change at any moment. I don’t think I’ve ever felt so helpless about anything, as we wait to get through the rest of this pregnancy and pray that the condition doesn’t worsen.
Everything about this otherwise healthy pregnancy, I feel, has been stolen from me. My plan to VBAC (a plan which was going smoothly, by the way), is no longer on the table. I can no longer attend the midwife/OB practice I’ve been going to for the last eight months -- I have to now see a MFM at Hopkins to be monitored more closely. Actually, I am going to see them, AND I am going to start commuting to Philadelphia once a week so I can be seen at CHOP and hopefully deliver there.
My baby is most likely going to be in NICU. My hopes for an easier breastfeeding journey this time around have also been taken away. I know I’m going to be hooked on a pump, away from my baby. I’m not going to have skin-to-skin. I won’t have delayed cord clamping. I won’t be able to let my oldest son hold my youngest son.I won’t be able to take my son home right away. I won’t be able to go home right away. We won’t be able to share him with our family. I don’t know what I am going to have, to be honest. I don’t even know if I’m going to have a healthy baby. Nothing is a given anymore. It’s all an unknown.
I have unwillingly become a “Heart Mom.” I’ve been adopted by a group of women out there who also have “Heart Warriors.” I have seen a ton of facebook pages following heart warriors and their journeys, and I never thought that I would personally be walking this road, too. I think of all those sick babies, all the pictures, all the happy and sad endings, and I wonder where I fit into all of it. How is my story going to end? How sick will my son be? That’s one of the hardest parts of this all -- I still don’t know just how severe this is, and I won’t until he is born. It’s all very much a waiting game.
My very supportive friends and family keep telling me that I am allowed to make the tough decisions, I’m allowed to let go to the expectations that I had all of this time, and I’m allowed to mourn all of it. Inside, I know the things I am letting go are very small in the long run, and that I am going to do whatever I have to do to give the best chance and care to my son; but I am still mourning it. I am still astonished that I’m a Heart Mom. I still don’t understand how I got here.
I was 31 weeks along. Nothing like this was supposed to happen.
Please keep us in your thoughts and prayers as we traverse our new normal for the next month or so. Please pray that our baby remains relatively healthy, and that his heart continues to beat strong. Pray that I can maintain a positive attitude, that my mood doesn’t tank, that I can manage my depression and anxiety well enough to keep my head above the water as I struggle with suppressing feelings for the good of not stressing out baby, but also allowing myself to emote in some way so that it all doesn’t boil over.
Thank you. <3