Cardiologist was today. Gabriel has a hole in between the bottom two chambers of his heart. The hole has a possibility of closing on its own up until about a year after he is born. If it does not close, he will need open heart surgery at “some point”…depending on how well he is doing. He could wait to have surgery if he is doing well, sometime shortly after being a year old. If he is not doing “well” then he will need surgery sooner. He could also need surgery sooner if the cardiologist is underestimating the size of the hole or if it starts causing problems. For now, we have another appointment in six weeks to check it out again.
The ultrasound technician also made a comment that the most common heart defect in children with Downs won’t show up yet since I am only 22 weeks along. I have yet to ask what that is exactly. I’m learning that sometimes “knowledge” is not as powerful as we tend to give it credit.
I’m sad, but not as sad as I am pissed. I’ve begun to move through some of these emotions again and they are not as severe as emotions I had with other news, but they are still present and fluctuating. I just keep asking, Isn’t this enough?? How much more will he have to go through? And selfishly, I think, how much more bad news and heartache do I have to take in all of this?
So, that’s where we are. Tomorrow, I’m meeting with the surgeon who will be fixing the duodenal atresia. I don’t think there will be any surprises or new heartache, besides the second worst heartache that I can imagine right now…first being the unthinkable. I get to find out how long I have to watch Gabriel through a glass window as he is connected to a ventilator and feeding tubes, how long I have to wait to hold him and feed him, and how short I will have with him before he is taken for surgery. Again, these are the selfish things. Sometimes I have to consciously change those thoughts and sentences to read, “I get to find out how long he will be connected to tubes and machines, for how many nights he will be by himself, and how much pain he will be in and for how long…” The affirmations or extensions of my fears will take place tomorrow. I’m not looking forward to that.
Today has been harder, or maybe I’m just moving into the anger part of my emotional cycle. I’m hoping that after tomorrow I will have a better idea of what to expect…and speaking of, “What to Expect” is a website for expecting parents. They send an email a few times a week about various things. I find myself not wanting or being able to read them at all. I used to read them with such excitement. Now I see the emails and usually think, “you people have no idea,” or “there are so much more important things, in my reality at least”.
Despite the depths of anger and sadness at various points throughout the day, they are usually fleeting, all thanks to Gabriel. He gives me a good kick or punches at the ultrasound probe and I am reminded how precious his life is. He is a little person, my little man. He has character, passions, and emotions. He reminds me that he is more than “complications”, and I love him more for that.