The day Aria died: Part 2

This picture doesn't have anything to do with these posts.  I just thought that the heaviness of these posts warranted a light-hearted picture, so I present to you. . . Aria with bedhead!  Really the only time I ever saw her with bedhead, but I mean for a 5 week old that's pretty impressive!  You can totally see which side she had been sleeping on!  I just laughed and laughed when I came to the NICU and saw her hair like this.  I love too the way she's grumpily peering through her eyes at me as I woke her up with my laughing.

You can read Part 1 here.

In this segment of Aria's story, I want to talk about the physical aspects of her death.  I talked extensively in Part 1 about how we had to choose to remove her life support system.  I should back up just a bit and tell you that wasn't the only route we had thought of in order to let her go.  The thought of removing her support made me sick to my stomach and I basically begged the doctors to tell me if there was any other way (for example, stopping her medications).  Everyone we talked to at the hospital very firmly but kindly told us that taking her off the ventilator was, in fact, the best way.  Any other way would draw things out and she would have to suffer through the side effects before she passed.  With a planned life support removal, things would be quick and they could be prepared beforehand by giving her a lot of pain medication so that she wouldn't feel anything as she passed.  So even though I had been praying she would just crash because that would be (I thought) mentally easier on me, it wasn't what was best for Aria.  It would be much better for her if her passing was planned so that she could be made comfortable.

There was one main reason I was so scared of having her end come through removing her ventilation method of life support.  And it was a selfish reason.  During her short life, there had been a few instances where her oxygen rates plummeted.  I was there one of the times this happened, when she was 3 weeks old.  During this particular instance, she lost her oxygen not due to natural reasons but due to a clog in her vent after coughing.  I was holding her, and watched my beautiful baby go from pink to purple-black in a matter of seconds.  Her oxygen on the monitor went down to a 3 (normal is in the 90s).  THANK GOODNESS the respiratory therapist was in the room when this happened and immediately attended to her, suctioning out her vent.  Within a minute she started to turn pink again.  I maintained my cool shockingly well in the moment - was very calm but urgent in calling over her nurse and RT.  I'm good in emergencies like that.  But as soon as I left 10 minutes later it really hit me and I just started to shake.  Nobody should ever have to see their baby that color.  There is NOTHING natural about that.  That episode has haunted me ever since.  She turned purple-black when she stopped breathing at least 3 other times that I know of, once while Michael held her, and twice more that her nurses told me about.

So that's why, when we started discussing end of life plans, I was so desperate for a solution beside removing her life support.  I just knew that once she stopped breathing she would turn black again, and I did not want my last memory of my daughter to be of her looking that way.  In the whole horrible-ness that is watching your child die, that was my biggest fear.  I think probably every medical staff involved in her care knew how scared I was of that, and they couldn't promise that wouldn't happen.  But they all maintained that it was the most comfortable path for Aria.  And because I love my daughter, I agreed that was the path we would take even though I was certain it would haunt me for the rest of my days.  I felt like there was so little I could do for Aria.  At least I could give her a comfortable passing, even if it was traumatizing for me.

The last few days of her life, after she had started to code and forced us to set a date, there were a few different nurses and staff members that talked to me in detail about the death process, trying to prepare me.  One thing that had been mentioned is that when Aria had her episodes where she stopped breathing, her body would tense up and her veins would clamp down, stopping the blood flow and causing the purple color.  By having a planned vent removal, the pain medication we could give her beforehand would also help her to be relaxed.  So relaxed, that hopefully her veins wouldn't clamp and she would retain more normal coloring.  While I hoped for this, I also did not expect it.  My plan, as immature as it sounds, was to hold Aria close as she passed and then basically just not look at her as I handed her body back to our nurse.

Blessedly, Aria did not resist death at all and slipped quickly and peacefully away.  When our nurse came over to me with a stethoscope to check for a heartbeat, I was terrified to pull her little body away from mine so that she could reach Aria's heart.  I remember asking our nurse something like "I'm guessing I should just hand her to you and not look?"  Bless nurse Jamie's heart - and all those NICU nurses who have to deal with such sensitive things - instead of immediately dismissing my fears, she paused for a second and bent over Aria to really get a good look at her little body pressed against mine.  I knew in that second that no matter what she told me next, I would trust her implicitly.  Thankfully she was able to honestly assure me that everything was okay and that I would be just fine.  And I was - more than fine actually.  After she passed, Aria's coloring wasn't bad at all, just a little "dusky" as they call it.  It actually made her look quite angelic.  For the next 3 hours until we left, I kept looking at her in awe and saying to Mike how beautiful she was.  I couldn't believe how peaceful she looked, and so pretty!  We had never seen her without her breathing tube so we kept oohing and aahing over her cute little lips and cheeks.  I always thought she was gorgeous even with her breathing tube in, and almost didn't recognize her with it out.  I will always treasure the pictures we took of her after she passed, the only pictures we have where we can see her face fully.  (Sorry.  Still not willing to share those, beyond the couple we put in her memorial video.)

I don't know what Mike's plan was, but prior to her death I had not expected to stay long at all after she passed because I wasn't sure how I'd handle being around her body, since I expected it to be traumatic.  I am so thankful that is not how things ended.  She just was so beautiful.  I really had to tear myself away at the end because I felt like I could have kept holding her forever.  I've read a lot of accounts by now of other local mommies who have had to say goodbye to their babies, and I've found that everyone has different limits on when they're "done" snuggling their baby after death.  There's no right or wrong answer.  We stayed with Aria for about 3 hours after she passed.  Mike was done before I was but was happy to just sit with us and our nurse as I continued to snuggle her for a while longer.  Our nurse had promised to stay past the end of her shift for however long we needed, so that I could leave Aria with her the way I wanted to instead of handing her to a night shift nurse I didn't know.  We just love our nurse so much and I am so glad that I didn't feel I was being rushed after Aria passed.  I am so thankful that I was able to hold her for that long.  It was a truly once-in-a-lifetime experience, to be able to snuggle her without fear of messing up her tubes.  I can still feel her little body against mine and can't wait to get to heaven and feel that again.