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Roller Coaster

The past week and a half has been one huge roller coaster ride of emotions. One minute I am doing okay, resting assured that my son is in the best care possible and the next moment I'm a sobbing heap of a mess, missing him so much I feel like I'm going to suffocate. I'm torn between wanting to be at the hospital 24/7, and being home with my daughter. I don't want this to confuse or scare her. I just want my son and my daughter both at home, with me. On top of the sadness there is a tremendous amount of guilt. Am I doing the right things? Making the right choices? Is what I'm doing today going to help or harm my children in the future? I know these are questions all parents have, but I've never felt so much pressure to get it right.

This week we found out that baby Jace tested positive for CMV. We always knew that was a possibility but having it confirmed is a completely different ballgame. Because now we have to make choices. To keep him on the antiviral medication that his doctor put him on, even though the side effects scare the shit out of me? Or do I ask that they discontinue treatment? I don't know! The antiviral medication that he is being given is called Ganciclovir. It's an IV medicine that he receives every 12 hours. They aren't sure how long he will be given this treatment. It can be anywhere from 2-6 weeks. Ganciclovir is classified as a carcinogen. It has shown to cause tumors in animal studies. It is shown to effect fertility in animal studies. We have to wear gloves when we change his diapers. And THIS is the medicine he is being given! It just doesn't seem right and I do not know how I feel about this. What I do know is that it scares the CRAP out of me. But what choice do I have? This is the recommended treatment. When I asked his doctor about what I have read regarding Ganciclovir, she basically explained to me that in animal studies, the animals are given large doses, nowhere near the small amount Jace is being given. She assured me that in the 30 years she has administered this medicine (she estimated she's had 150-200 patients treated with Ganciclovir), that she has never seen that kind of adverse reaction.  She says that before any kind of treatment is given, the pros and cons are heavily weighed against each other. And that the pros outweigh the cons. Again, I don't know how I feel about this. It feels like a gamble. I mean, CANCER?? Part of me would rather deal with CMV, even though I know that CMV can be life threatening, *in some cases*. But the thing is, Jace seems FINE. Besides the fact that he was born 9 weeks early, he does not look sick. He does not act sick. He is gaining weight and tolerating my breast milk. He's now at 35ml of my breast milk every 3 hours, which is the max amount for his weight. Which, speaking of, he now weighs 4 pounds 4.8 ounces (he was born weighing 3 pounds 12.4 ounces). He has been off of the ventilator since his first full day on earth. He's been off of oxygen for days now. He is breathing on his own. He's feisty and aware and alert when he's awake. So I am constantly questioning myself about whether or not we even need to treat CMV, even though we know he has the virus. I just want to know that what I'm doing is right. I want to know that what we are doing today won't hurt Jace's chance of having children later. I want to know that he won't GET CANCER in a few years. I can't stand the thought that we are doing all of this now to improve his chances of a healthy life, only for him to get cancer down the road. I really truly cannot stomach that thought. 

I broke down crying in the NICU tonight after talking to his doctor about this. And the thing is, I trust his doctor. I trust his nurses. But they are human. They aren't infallible. They can't PROMISE me that because of his exposure to Ganciclovir, that he won't get cancer or have fertility issues later in life . They can't promise me anything. They can't promise me that what we are doing to help him today won't hurt him tomorrow. And I can't live with that. I literally go from being relaxed and watching Rudolph the Red Nosed Reindeer with Scarlett, to sitting up straight with my cheeks flushed and my breath short and my heart racing because I DON'T KNOW WHAT I AM DOING and I'm more scared than I have ever been. 

I just need someone to tell me what to do. Do I stop the Ganciclovir? Do I continue the Ganciclovir and pray that it kills the CMV and nothing more? Someone just tell me what I'm doing is right! Or tell me that it's wrong. Just anything but this gray area of not knowing. 

So that is where I'm at today. I'm ready for my son to be home with me. I'm ready for him to be off of this medicine. I'm ready to be able to hold him whenever I want and smell him whenever I want. I'm ready to *start* doubting regular parenting stuff, and stop doubting whether or not I'm directly contributing to increasing my son's chances of having cancer later in life. Like every good parent in this world, I want my children to be okay. I want them to have a happy childhood and I want them to grow up and be good people. I want them to have a long, happy, healthy, and prosperous life. And I want to make sure that I'm the one (along with my husband and with God) who is helping them to do these things. I don't want to be the one messing it up. 

So again, I ask for your prayers. Pray that my husband and I will have the discernment to make the right choices. And that we will have peace in knowing that we are doing the very best for our son. And most of all, prayers that Jace will survive all of this and be okay. Better than okay. That he will be amazing and healthy. And that he will grow up and love the Lord and know that it was He who blessed him with everything that he has ever had, the most important of all being his life. 


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