I’ve been feeling very on edge the past few days. I’ll be perfectly fine one minute and then highly irritable the next. I was attributing my moodiness to the fact that I have spent practically every waking moment with Jeff, J and C for the last two months straight and the family time is beginning to get on my nerves. Don’t get me wrong, I absolutely love all three of them, but the lack of a schedule is beginning to drive me insane. Scratch that–completely driving me insane. Everyone (minus myself, of course) is sleeping until 9 am. The kids are staying up until 930 pm. We need to get back to a 730/830 schedule. Jeff needs to get back to work. Jordan needs to make some friends. And Carter needs to be back on his schedule so he can stop being cranky. I love my family, but two months is entirely too long to never not see them (how do you like that sentence?? See, I’m going so crazy that I can’t even form coherent thoughts anymore).
At least that was what I’ve been blaming my moodiness on. But as J is watching a mini Jake and the Neverland Pirates marathon (“Jake and the Neverland Pirates…and ME!!!!!” My insanity train is gaining speed…) while C sleeps and Jeff works in the basement, I’m still feeling irritable. I started working on some DIY projects I have on my plate, but am just not in the right mood for them and I feared they were only going to make my mood worse. And then it hit me…do I need to write?? To take some time to confront my underlying feelings about Zoe? Because Lord knows that unless I sit down to write about it, I blatantly gloss over anything I’m feeling. It’s
probably definitely time for a heart-to-heart.
So, the results. Man, all of this happened so long ago that I’m not even sure if I can remember it in the proper order. Basically, I finally bit the bullet and called the decadent affairs office at UVA around the 110 day mark (this all happened while we were still in Virginia. I think the week before the movers came?). I really didn’t want to make the phone call; I felt like I was badgering them, even though the window they gave us was “60-90 days”. But at the same time I was worried that we had slipped through the cracks; I didn’t want to be forgotten about either. The person who answered the phone at decedent affairs (doctor? receptionist? I have no idea) checked my file and said Zoe’s autopsy was indeed complete. According to their system, a letter would be mailed to us within the next week stating the autopsy results were in and a doctor should be contacting us to go over them. He suggested going ahead and contacting the doctor ourselves now since sometimes people slip through the cracks, just as I had feared. And I’m not in anyway blaming anyone or bitter about that; they kind of have more important things going on…like trying to save all of their patients that are currently alive.
After hanging up the phone with decedent affairs, I then called Zoe’s main NICU doctor from UVA, Brooke. I left her a voicemail during which I immediately burst into tears and could barely get out what I was trying to say. It was incredibly mortifying. I don’t know where it even came from–I had been perfectly fine prior to making the call. I’m sure it was just everything catching up to me.
Brooke called back a short time later. Her first question was to ask how we were doing. I hurriedly reassured her that we were, in fact, doing fine, contrary to how I sounded in the voicemail. That was two months ago and I’m still embarrassed by that message. The she dove into the results. Or, I guess I should say, lack thereof. Basically, there were no answers. There wasn’t anything discovered in the autopsy that could give us more of a clue what happened. Zoe was born with a thick heart, but no reason why. It was all very anticlimactic. I didn’t feel any different after having the results than I had previously. And I think that’s part of what took me so long to update everyone–it didn’t change anything. The results don’t matter.
Jeff was very dissatisfied with the lack of answers. Obviously. We still don’t know how or why it happened. Or if this something we need to worry about going through with another child. I, on the other hand, was perfectly fine with the unknown. Not until we heard the words “we don’t know” did a huge weight completely lift off of me. I don’t know what I would’ve done if she had come back and said, “I’m so sorry, but you did this or that wrong during the pregnancy and that’s what caused the problem.” Or “One of you have a major genetic flaw and are very likely to pass this onto another child so we recommend not getting pregnant again”. Or “It’s highly likely J or C also have a thick heart and may drop dead at any second”. Or any one of a million other answers that meant we caused this. We inflicted all of this pain on Zoe. I worked out too hard or slept wrong or the doctor-prescribed-pills I took for morning sickness during the first trimester caused this. Because any of those answers would have been unbearable. I wouldn’t have survived. It might have been anticlimactic, but not knowing was a-okay with me.
Brooke said that she was going to pass Zoe’s case on to a cardiology geneticst at UVA. Just because she didn’t see anything didn’t necessarily mean there wasn’t an answer to be had–it just wasn’t anything obvious. She said to expect a call from him within a week.
True to her word, the geneticist called about a week later. He was absolutely phenomenal and both Jeff and I are disappointed that we won’t be working with him. He explained that there is a very fine line on which we must balance. We need to look into finding an answer, but at the same time not go overboard with it. The first step is for all four of us to go to a cardiologist to have all of our hearts checked out. If none of us have an undiagnosed heart condition then most likely the question train stops here. Most likely it was just a freak happening. If the cardiologist does find something in any of us, well then that’s a whole different ball game. We explained that we were in the process of moving and he said that he would put together a list of cardiology geneticists in the KC area for us. He also recommended getting a copy of Zoe’s full health records for ourselves to make things simpler every time we see a doctor. He said that if UVA tries to charge us for the records to let him know and he would request them instead and send them to us himself. See why I was disappointed we won’t be working with him?
With all of the moving we haven’t had a chance to get a referral to a cardiologist. Zoe’s autopsy results came in the mail last week, and with it a letter to give to our PCM explaining the situation and the recommendation for all of us to get echoes and ECGs. Hopefully that will make the process easier. I’ll find out for sure on Tuesday when I see J’s PCM for her school physical…
The actual autopsy is filled with a bunch of medical mumbo jumbo. I’ve tried to read it about a dozen times but can’t make it more than two or three sentences in before I give up. Her final cause of death was cardiomyopathy, which just means “diseases of the heart muscle”. She was diagnosed with hypertrophic cardiomyopathy, which is slightly more specific and means a “thick heart”. Since this can occur at any time and to anyone, there aren’t any signs or symptoms, it’s important for myself, Jeff to get checked every 3-5 years and J and C every year.
I cried pretty much the entire time I was writing this. Just goes to show that I really did need this. Hopefully this was therapeutic enough that my mood will return to how it normally is–mostly good with only a few bouts of unexplained irritability. After all, I am female.