The day Aria died: Part 1

Aria's many machines

**As a sidenote, because Mike mentioned this: Obviously Michael was a very active participant in all of Aria's story.  However, I can't write about his thoughts and perspective, only my own.  So if any part of her life seems slanted toward me and Mike was just a bystander, it's only because it's my point of view.  Lest you be concerned.**

I've gone back and forth for a long time on how much I want to say about the day Aria passed.  We've been pretty ambiguous about the details so far because we weren't ready to talk about it, and also were afraid of being judged for the decisions we had to make by others who have never been in our shoes.

As you may have noticed, I tend to be pretty wordy and overly detailed when reliving memories.  That's because I don't want to forget a single thing.  I have read other blogs where moms have given a pretty detailed minute-to-minute account of the day their child died.  I admire them greatly for this and really felt like that was quite helpful when I was trying to "prepare" for what Aria's last day might look like.  However, as much as I want to share every other day of her life with the world, I find myself having a weird protectiveness around the day she died.  It was just so immensely personal.  Not even our families know many of the details.  It is a memory, both bad and good, between Michael, myself, and our nurses.

I think I've settled on a good compromise in what I will be sharing.  I will not be giving a play-by-play.  That's too personal.  However, I will share details about the main parts of watching your child die.  As I have read other accounts of baby/toddler death, the same few things stand out to me so those are the parts I will share.

(However, if by chance you are a parent facing the same situation, please feel free to email me at natasha.515 at gmail dot com and I will discuss details with you more freely.  I did feel like reading other accounts was very helpful as we prepared for Aria's death, but I don't feel the need to give all those details to the general public.)

Wordy enough, and we haven't even started.  That's pretty true to form for me :)

In this first post I better tackle the biggest issue first - her life support system.

I guess the first thing, that most people have figured out, is that we did have to choose to take her off of life support.  This was obviously very difficult.  The day she was born the doctors didn't even think she'd live through the night, so for the first few days we were still expecting she would just crash and go at any moment.  After that first week though she started to stabilize a bit.  However, by the time she was a week old we also had the results of most of the testing back and had been in several emotional conferences with the specialists as everyone came to realize just how severe her problems were.  We knew at that time that IF she were to live, her quality of life would be very, very poor.

So we made the very difficult decision to put a DNR (do not resuscitate) into place so that if her body failed again, we would let her return to heaven.  Most people don't realize how traumatic it actually is to be brought back from the brink of death.  As it was explained to us, if she crashed then life-saving measures would include not only obvious things like bagging her airway to breathe for her, but also things like shooting epinephrine into her heart, jabbing tubes through her ribs into her lungs for airway access, and some other horrible sounding things.  She'd already been through life-saving measures once on the day she was born, and we decided that we didn't want her to go through that pain again, especially since her prognosis was so poor it would probably not be the last time it happened.

We felt sick enough about the DNR but thought it was just a matter of time before her body gave out.  Our little cutie surprised us by hanging in there as long as she did (not improving, but just remaining stable).  It was both a blessing and a curse at the same time.  We were just in limbo because she wasn't making progress, but she also wasn't really getting worse.  However she was still completely reliant on the machines.  We had talked to others who had babies in the NICU in that same kind of limbo state - some of them had spent months upon months hooked up to machines in the NICU!  Most of them their baby eventually passed, and the ones who were still alive didn't have a great prognosis.  That was the biggest thing for me - I could live with putting my baby through months in the NICU if we knew we were working toward a healthy outcome.  But was it selfish of me to ask her to hang on when even her "best case scenario" outcome was so grim?  The things that were wrong with her COULDN'T be fixed.  She would need several surgeries just to get to a point where we could take her home, and that would only be the start of a short life full of surgeries and hospitalizations.

For about 2 weeks I had a nagging voice in my head that I needed to bring up the topic of life support removal with the doctors.  I knew that unless other instructions were in place, legally the hospital had to do everything in their power to keep patients alive, no matter if it was the best thing for the patient or not.  I kept ignoring that voice though because I had found a small bit of contentment in our current routine.  Although chaotic and draining, we had fallen into a rough routine of splitting our time between home and the hospital and I was happy to keep doing that even though it meant only seeing my baby for a few hours each day, because that was better than no hours each day, right?  I felt too guilty to even bring up the topic to Michael because I was scared of what he might think of me.  Silly, I know, but I know he was hoping she'd pull through enough that we could take her home.  I hoped that too of course but I just didn't believe it would happen.  Finally though, something happened that forced us to start talking about what would be best for Aria.  The day after her one month birthday, she developed an infection.  Although the immediate danger passed after the first 24 hours, it really seemed to do a number on her and she never seemed to recover completely from it.  Her little personality was just never the same after that.

A few days later was our scheduled Care Conference.  I talked about that Care Conference in another post.  That took place on Monday August 4th, and at that meeting was when we kind of realized that we couldn't just wait for her to crash.  We would have to actually make a decision to remove her life support and let her pass naturally.  That was, perhaps, the worst day of my life.  How do you pick the day that your baby will die??  I felt somewhere in my mind that it would be unfair to ask her to stay past the end of the month, but beyond that we were dragging our feet in setting any date in stone, because we didn't want it to happen.  For the next week, my daily trips to the hospital found me bawling alone in my car as I drove, in informal prayer just begging over and over to Heavenly Father, "please don't make me do this.  please don't make me be the one that has to let her go.  please just take her."  I just honestly wanted for her to crash again, rather than for me to have to pick her death day.  I just felt like that would be so much easier to handle mentally, because if she crashed there was nothing we could have done and it would have been just so obvious that her little body was done.

My prayers were answered to a degree.  Just 10 days after our Care Conference, on Thursday August 14th, Aria had a Code Blue.  Meaning she stopped breathing, and her heart rate dropped to 0.  Medically speaking, she was dead.  It took them a few minutes to revive her and bring her back to life.  In the middle of this, the NP called me with the intention of asking how far we wanted them to go to try to revive her (we could verbally override the DNR if we chose to in the moment).  They were currently bagging her airway and just rubbing her skin to try to stimulate a response, and didn't want to stop those minimal actions unless I directed them to.  As fate would have it (although I know it's no coincidence), I was away from my phone when they called and Bennett answered it.  So it was maybe 60 seconds before I even realized someone had called.  Those 60 seconds before I took the phone from him made all the difference, because by the time I answered Aria's heart had started to beat again, so they continued to revive her fully.  If I had answered the phone immediately I probably would have said "make her comfortable, and let her go" and she would have been gone.  It was a blessing that she did not pass in that way, although I didn't think so at the time.

In light of what had just happened, Aria's doctors asked us to meet with them as soon as possible so we met with them a few hours later to discuss what had happened and where we wanted to go from there.  It was clear they took this as a sign that her life was rapidly drawing to a close, and we did too.  The turning point came when the NP very gently and kindly said, "I think she's telling you that she's done."  It felt like a huge weight lifted from me.  Even though I knew, had known for weeks, what the right decision was, I needed to hear it from the doctors to feel validated.  I didn't want them to think I was a horrible mom for wanting to discuss removal of life support (I know none of them thought that, they all knew that really was the only way Aria's life could go, but still).  We made the sickening decision to remove her life support a few days later with the hope that we could have Mike's parents fly in to see her before that happened.  I spent the rest of the day wondering if her code had been the answer to my prayerful pleas, and if she was supposed to go that day and we had kept her alive instead.  As I would later come to understand, that WAS an answer to my prayers, just not in the way I expected.  You see, Aria coded again that night.  Again she was brought back.  This second incident helped enforce our knowledge that her first code wasn't an isolated event, some freak accident.  She was clearly getting worse. This was such a blessing in disguise, because it made having to pick a day for life support removal a necessity, rather than feeling like some random monster act on my part.  After that second incident, we discussed that if she did that a third time we better take her off support sooner.  If she had to die, we wanted it to at least be in the arms of her parents and by removing support we could ensure that, rather than her crashing in the middle of the night without us there.

We took her off of life support on Monday, August 18th.  Everyone had the expectation that we would be able to hold and cuddle her tube-free for a couple hours before her spirit left her body.  Instead she went almost immediately.  We had already been taking turns all that morning holding her, and Michael was the one holding her when they took the tube out.  It was kind of chaotic those last couple minutes because no one was prepared for her to go that fast.  We hadn't even had time to walk over and turn off her monitors yet, so her alarms were blaring for a couple seconds before our nurse ran over and turned the power off.  Once we realized how quickly she was fading, I just scooped her up from Michael's arms onto my shoulder for the first time ever and we tried to comfort her in the midst of our shock.  She went so quickly that she didn't seem to suffer at all though, which is a great comfort to me.  Even though I felt robbed of my time holding my baby while she was still living, the fact that she went so quickly was comforting to us, because it just proved how much she was relying on the machines to keep her alive.  She was too sick to fight for life on her own and was eager to return to the comfort of heaven.

I will post the next segment of her story tomorrow.