The results.

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.  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.

Zoe’s Tree Planting.

I finally opened the photos from Zoe’s tree planting. I hired a local photographer, a friend of my someday-sister-in-law (if my brother ever gets his act together and actually proposes before she wises up and dumps the doofus!) to come out and take pictures for us. It seemed a bit weird to hire someone, but I didn’t want to ask any of the guests to take them, plus I wanted everyone who was there to actually be in the photos. I’ve been super anxious to see them. The CD arrived a few days ago (no fault of the photographer’s…we needed an address first, hahaha) but the moment I saw it my excitement was replaced by another emotion. Not dread…not sadness…not depression. Anxiousness maybe? I can’t even put my finger on it. This was it: the final photographs.

It wasn’t just that it was the “end” of it all either. I wouldn’t say I’ve been avoiding thinking about Zoe, but I’ve been focused on so many other things at she hasn’t been at the forefront of my mind like she was the for the first two months after her death. And looking at the photos meant reliving it again. Confronting the thoughts I’ve continuously pushed away.

We went to the library in town for the first time today (this has something to do with Zoe, I promise!). I misread the schedule online so we got there just as story time was letting out. Being confronted with all those moms with multiple children all of varying ages brought everything rushing back. There were babies and toddlers everywhere. That and the teeny tiny 2 week old baby that was there. Tears sprung to my eyes watching the mom corral her two other children while breastfeeding the baby at the same time. That wouldn’t be me right now (Zoe would be 5 months on Thursday and on a rigid schedule by now 😉 ) but it SHOULD have been me 4 months ago. This was the first time I was in public with the kids in a child-centric setting and I was totally unprepared for its impact on me. What a surprise.

After my experience at the library this morning I decided I was done procrastinating looking at the pictures. It was time. And looking at them turned out not to be emotional for me at all. Granted that could’ve been due to the fact that I HATE Jeff’s laptop with a passion (seriously, I’m incapable of using anything that’s not a Mac anymore) so I spent the entire time muttering swear words under my breath instead of focusing on the photographs. But whatever the reason, I’ll take it. I smiled remembering how J crawled into the hole and walked all over Z’s ashes when I asked her to place the bear at the bottom of the tree. I remembered reading the poem that came with the butterflies and recalled how perfect it was for our situation (and wished my copy of it wasn’t packed away because I can’t remember exactly what it said). I shook my head remembering a couple of inappropriate comments made…like when one of the kids threw a shovelful of dirt in the hole and yelled, “Die, bear, die!!!!” while laughing maniacally. How we got started 20 minutes late because unsurprisingly one of the Sunday clan was running behind. How amazing Jeff’s pulled pork tasted and that it turned out to be the perfect amount of food. How I made Jeff wait until everyone was there to drop the tree into the hole, instead of doing that part earlier in the morning. How we told Tyler a 6 foot oak and instead he showed up with a 20 footer…about 20 minutes before the tree planting was supposed to begin. How creepy it sounded when I passed out the butterfly envelopes, hearing their legs/wings scratching at the paper, trying to get out. How the majority of the butterflies didn’t have use of their wings yet and plopped straight down to the ground when we released them so we had to be careful walking on the grass so as not to trample them. I was just happy that the majority of them were alive! It probably wouldn’t have been a good omen if all 30 butterflies were dead upon opening the envelopes…

But mostly I remembered how nice it all was. The weather was perfect. Everyone was able to make it, minus just a few people. We spent some great quality time with family and friends that we don’t get to see often enough. We were able put our baby girl to rest in a beautiful, peaceful way. There are a handful of times when Jeff comes up with a REALLY stellar idea, and this was one of them. I’m glad we have the tree to come back and visit every time we go home to see how much Zoe has grown. I’m glad we had to wait for a few months for the weather to warm up so we had time to come to terms with our grief. I’m glad I hired someone to take photos and that she had the brilliant idea to get a group shot at the end (although I do wish it would’ve occurred to me to get one of just the 4 of us too. And that I had taken a photo of just the kids by the tree before we left. Those would be great family photos to mark everyone’s growth as time goes by! Guess I’ll just have to start that tradition the next time we go home…). I’m glad that all of our friends and family were able to participate in burying the tree, her legacy. I’m glad we did this.

My favorite moment of all was when I asked J if there was anything she would like to tell Zoe after her ashes were spread. She looked at me and said, “No. I talk to Zoe a lot at night before I go to sleep. I tell her all kinds of things then.”image

The “What-Ifs”…

It’s been awhile. About ten billion things have happened, all cementing the fact that moving/stress/a new environment is definitely the way to take my mind off of things. And timing-wise it all worked well. Going through everything we have the last few weeks on top of still majorly grieving any earlier would have been impossible. I needed time to process Zoe’s death and to go through the roller coaster of emotions. But any longer to dwell and I would’ve gone crazy. I haven’t cried in weeks. I think of her often, but never with gut wrenching sadness. I still have times when I have to catch my breath when she slips into my mind, but it’s not completely debilitating. I’m over the worst of it. There are still going to be plenty of bad times, but I’m okay. We’re okay.

All of it made me wonder what it would’ve been like if we had a 4 month old to worry about on top of it all. How would my sleep deprivation effected my dealing with the unbelievable stress of our stuff packed like shit? Seriously, I can’t even describe how horribly our stuff was packed. For me the icing on the cake was our 50 inch plasma TV (which is in the military moving contract that it has to be crated) shoved into a box the packer made by taping broken down boxes together. He didn’t even wrap it in paper before sticking it in there (not that it would’ve survived even if he had used paper, but still!).

Tv

Tv

When we were finally blessed with the 2 most amazing packers I have ever seen on Friday morning (the day we were supposed to be leaving, not still packing and loading) to completely repack our house, exclamations of “WHAT THE HELL IS THIS?!” and “YOU’VE GOT TO BE KIDDING!!!” were heard all morning. We were continuously asked if it would be okay if they took pictures to show their bosses and other professional packers the shitshow our boxes were.

Box that popped open all by itself.

Box that popped open all by itself.

This is how the majority of our boxes looked.

This is how the majority of our boxes looked.

How all of my lamps were "packed". Lightbulb and all.

How all of my lamps were “packed”. Lightbulb and all.

My TiVo. In a suitcase.

My TiVo. In a suitcase.

image

At least this box had paper…even if the breakable things weren’t wrapped in it…

I asked Deshawn what he thought the worst part was and he told me “The kitchen, hands down. They didn’t use a single piece of packing paper in any of your kitchen boxes.” Just so you know, every single plate, cup and bowl we own are glass. I know Jeff’s breaking point was when we discovered his $1,000 dress mess uniform crumpled in a ball at the bottom of a box under a bunch of shoes. Especially sncece he had specifically told them to pack it with care.

The dress mess is under all that crap.

The dress mess is under all that crap.

I have never seen him so angry in my entire life. I nearly lost it when I found my iMac desktop at the bottom of a box under a bunch of other stuff. It goes without saying there wasn’t any paper in that box either. All I can say is thank god for Jason, our driver. Even at 6 pm on Thursday night when he was running around like a madman trying to repack our house himself, not knowing if he was going to get paid for his hard work, and Jeff and I were beyond caring and told him to load everything as-is, we’d just buy new stuff, he said “Absolutely not. I still care about your stuff and I’m not letting it all get destroyed.” Sorry babe, but Jason is my new hero.

I can’t even imagine how things would have gone if I was waking up every 3-4 hours to breastfeed Zoe on top of the whole ordeal. I was already sleeping like shit from the stress of it all; that would’ve made it even worse. If you know me well you know that I can be a real bitch when I don’t get enough sleep, so I can only imagine what my repeated messages to the moving company would’ve sounded like. I tried to keep it civil in the beginning, knowing it wasn’t the contractor’s fault, but by the end it WAS their fault because they didn’t do anything to remedy the situation, even though we gave them a full 36 hours notice to fix the problem. When the second crew (aka two guys) was sent out to fix the problem and one of them was from the original crew, I called TMM in a panic and requested more/different people. I was told, “Well I’m 99% positive there isn’t anyone else to send. Everyone is booked so I’m not going to try. You’ll just have to hope that they retrained him and now he knows the way he packed before is wrong.” Okay I need to stop thinking about this. I’m getting all worked up again…

And what would’ve happened with the cleaning? The truck pulled out of our driveway at 11 am. Move out inspection was at 2. Fortunately we had the presence of mind to hire a cleaner, so instead of heading off to a leisurely brunch while J was in school, C was at hourly and hired help cleaned our home, we pitched in instead. We finished in the nick of time. What would we have done with Zoe though? I wouldn’t have put her in hourly, figuring she doesn’t talk or walk so she wouldn’t trample on our adult time, hahahaha, so I wouldn’t have been able to help clean (or at least not as much). Would we have finished in time?

What about on the road? How would we have split the kids? Would Jeff FINALLY have had to take a child during a PCS?!?! We were already stopping every 2-3 hours for fuel, so feeding her wouldn’t have been an issue. But would she have followed in her brother’s footsteps and hated riding in the car and screamed the entire 1100 miles?

How would the different sleeping arrangements in the camper effect everyone? J would be on the table, C would still be in the bottom bunk, Roman would be in bed with Jeff and Zoe and I would share the top. Would Roman be less annoying since he was on the bed? Would J still be sleeping til 9 am if she was in the middle of the camper? Would I have broken my neck trying to climb in and out of the top bunk?

And the biggest what-if: housing. Housing for students is a cluster fuck. It’s all on a first-come first-serve basis. Houses can’t be filled until the last class gets out. Move companies are completely booked. There are two housing areas that are available immediately, Old Oregon (which is tiny) and Infantry Barracks (which is historic, doesn’t have a garage or a yard, and in an apartment setup so half of the units are upstairs). If you want any of the newer housing you’re looking at a 2 week wait. And then an additional 2 weeks after that for household goods. It’s only 11 months so we already knew we were going for Infantry Barracks. And the moment I walked into the first house we looked at I fell in love. High ceilings, real wood floors, open…it’s gorgeous. image image imageEven if I had the choice of the new housing, I would’ve picked Infantry. However–we’re on the second floor. It’s barely possible with a 140 pound dog and a two year old. There’s no way we could’ve done it with a dog, a 2 year old, an incredibly lazy 5 year old (I’m already bracing myself for all of the complaining…) and an infant to boot. Lugging the stroller up and down. Having to carry her (and Jordan). Not possible. So what would’ve happened if we would have had to wait for other housing? Or for a bottom unit to open up? And the bottom ones are only 3 bedrooms–would we be able to make that work?

I am not in any way shape or form trying to insinuate that things are better because we didn’t have to deal with the stress of a 4 month old. That never once crossed my mind. I would still give anything to have her here with us; we would’ve figured everything out with her just as we did without her. I just wonder how it all would’ve been different. Just like every time we move and we have to make a choice between our top two housing choices–how would our experience differ if we had chosen the other one? If we had lived on post at Fort Riley? If the adorable house in Narberth had called a day earlier saying we were approved and we moved in there instead of the second floor apartment in Philly? If we had lived off post at Lee? I don’t regret any of those choices (well maybe the apartment in Philly…that was just awful), but I do wonder how completely different our experiences at each duty station would have been. And that’s just a house.

Oh and we do have results from the autopsy. Bottom line: no idea. More to come about that next time…