April 3rd, 2019 11:20a.m
The technician is having a hard time getting pictures, again. After trying for so long, the cardiologist said he had enough pictures, so we can wrap it up. We were escorted two doors down to this small room, full of books, a round table, chairs, and one window. The technician told us to “ Have a seat, the cardiologist will come back and talk to you guys “. At this point I’m praying out loud, talking to God, asking him to spare my baby, us. This time too, felt like a long wait but I’m sure it wasn’t . A tall, handsome, middle aged man, with salt and pepper hair walks in and introduces himself as Dr.Shaw, the cardiologist. He is holding papers in his hands with the back facing us. Sitting directly across from us, he looks me directly in my eyes, and confirms she definitely has HLHS. I was devastated. He turned over his papers which revealed notes, a diagnosed, and images of hearts . Each heart photo has a title with hand writing all over it. He starts to explain how the heart photos demonstrate the three different open heart surgeries she will need to have a chance at life.
He Explained :
The three surgeries are the Norwood, Glenn, and Fontan. Hypoplastic left heart syndrome (HLHS) is a severe heart defect. A baby with HLHS, left side of the heart does not form correctly. In a “ Normal “ heart, the left side job is to pump oxygenated blood into the aorta, and the large artery to the rest of the body. Which means the mitral valve, and aortic valve, are too small or completely closed. Although the left chamber walls are only about half of an inch thick, the left ventricle is the largest, and strongest chamber. Unfortunately, because the left ventricle is severely underdeveloped, it’s not capable of pumping blood to the rest of the body. The right side of the heart now has to pump blood to the lungs and throughout the entire body. In result, the right ventricle has mixed red, and blue blood. The survival rate is better now, compared to 30 years ago.
I didn’t say anything, I couldn’t. I’m in shock, hurt, confused, angry, and concerned. It feels like my heart got ripped out of my chest. I just grabbed my man hand, and together we cried. Dr.Shaw then stopped to tell us that it’s comfort care, if that was the path we wanted to take and they would support us no matter what. We put that to an end, quick . Dr.Shaw then goes on to say “ Well if you two are ready to fight, we are here to fight with you. It is going to be a lot of work, nothing about this is going to be easy, but it will all be worth it. Our team is going to do our best to make sure she gets the best care. I know this is hard and a lot to hear, being a father myself I can’t imagine hearing these things about my children.
I can’t sleep, or eat. I go to sleep crying, and wake up crying. If I don’t feel her move at least once in an hour I start to panic. Starting next week I have to go to the prenatal clinic every Monday, and Thursday until I get induced on the 29th. They will measure the fluid in her sac, watch the flow in the umbilical cord, give a non-stress, weigh, and measure the baby. I was told that the first surgery, Norwood, can take place from the time she enters the world, up to two weeks old. I won’t know until she’s here, and they see how she does on her own, which means I can push her out and she can be taken right from me and go straight into surgery. I can’t help this feeling I have of anger, I was angry with God. All I can do is ask why me? Why my first born? Have I already gone through enough? Everything is up in the air; how long will she be in the hospital, when she will have her first surgery, will I be able to hold her, will she survive? I joined a HLHS support group online, but nothing can prepare me for what’s coming.
April 29,2019 9:30a.m
Today is the day. I get induced at 2p.m. I’m so anxious, I can’t wait to see her sweet face, then again, I’m so scared. No one can tell me what’s going to happen once she’s out but they will have to take her from me.
To Be Continued…