The Hands that Help

I feel like it would be very ungrateful of me to not mention a huge act of service that has recently made a huge difference in our lives.  I don't know if it's the holidays or the natural ebb and flow of the grieving process, but I have been feeling very "broken" this past month missing my Aria.  I have always been the type of person to just suffer quietly and put on a happy face for everyone else so I didn't expect any extra attention with everyone so busy getting ready for Christmas.  But then two weeks ago we had a late night doorbell, and when we opened the door there was a gift on our porch and a note explaining that we would be receiving "12 Days of Christmas" gifts along with a nativity piece each night.  Last night we received our final piece and were able to finally meet and thank the several families involved.  I was so overwhelmed each night by this act of kindness and the knowledge that there were so many people taking time out of their day to do something nice for us.  I frequently shed tears at our nightly doorbell-ditch when I was reminded of that.  I don't think they had any idea how much this touched our hearts.

This has definitely not been an isolated event these past few months.  We have received so many acts of kindness while we've been mourning our Aria.  There's no way I can remember all of them in one sitting but just to mention a few:

• Our bishopric came and visited us at 11pm one night in the hospital because that was the only time we could fit them in
• I had several close friends who visited me in my hospital in the days following the C-section when I was alone because Michael was at a different hospital with Aria.  They just sat and listened while I tried to process what was happening.
• Our neighbors mowed our lawn for almost two months straight.
• Our neighbors organized a neighborhood effort to finish working on our front yard which we had started right before Aria was born - they manicured our lawn and trees and even planted our flowerbeds.
• Almost everyone I personally invited to come to the NICU to see Aria made the effort to come, even though it is a huge pain and a long drive for a 20 minutes NICU visit (but oh how grateful I am that other people besides family were able to meet her in real life!  And how grateful and surprised I was that pretty much everyone left with leaky eyes)
• We had meals brought to us for a week after I was discharged from the hospital.
• So many people stepped in to help with playdates for Bennett so that I could make my daily NICU visits.
• Our immediate families deserve a post all of their own really, but they did so much in the way of taking care of us and Bennett and making themselves available with little to no notice.
• A friend I hadn't talked to in years sent Bennett a book all the way from where she now lives in England.
• Several friends sent gifts or flowers, both after Aria was born and also when she passed away.  
• Our employers were both so incredibly supportive and understanding and gave us as much time as we needed with no pressure, as well as sending gifts and attending Aria's funeral.
• I actually had 3 different offers from sweet friends/relatives who offered to make a funeral gown for Aria.
• Aria's sweet nurses still keep in contact with us.  We owe those ladies our lives and sanity during those NICU weeks!
• I have a drawer full of cards and notes that people wrote to us with how Aria affected them.
• Mike had a friend who sent him a box of comic books as a "pick me up."
• Our extended families participated in a family fast near the end of Aria's life to help us feel peace about what needed to be done.
• Our brother-in-law took a day off work to help us take professional photographs - the only family photos we will ever have with Aria.  They will hang on our wall the rest of our lives.
• Another NICU mom whose sweet baby passed away a month before Aria contacted me and was so sweet and supportive during the initial grieving process.
• All of the staff at Primary Childrens who were always so kind to us and never rushed us into decisions and always treated our concerns with respect.
• Our old ward we moved from earlier this year who sent cards and little gifts up with a friend of ours.
• A couple close friends who came and just spent hours at our house cleaning, cooking, and playing with Bennett while I just walked around dazed.  
• Everyone who took the time to come to Aria's funeral, even though it was in the middle of a workday.  It was an open invitation and we were surprised and touched by some of the people who came that we might not have normally expected.
• A couple people gave me certificates for salon services to de-stress
• My coworkers stepped in without complaint while I missed so much work over the summer
• All the many, many people who leave comments on our blog or Facebook posts.  We love knowing people care!
• ....and so, so much more. 

My whole life, I have been very blessed to be on the giving side of acts of kindness like this.  These past few months I have been broken and battered with heartache, but I have been saved and humbled over and over again as I have been on the receiving end of so much love and kindness sent our way.  At least once a week I have someone different who randomly emails or texts just to let me know they're still thinking about us and these little "love notes" keep me going for days.  And the people who aren't afraid to bring up Aria in conversation (I love talking about her!) I am so blessed to know so many wonderful people in my life and am so grateful for all of you.

It's Been a While

Just a little note to reassure everyone that we're still here, and still writing.  I don't know how long or how often I will write on this blog later down the road.  For now I still think it will be fairly frequent, since we're still trying to mentally process and write down the last 6 months of our lives.

I do have a few valid excuses for my absence in November.  Part of it had to do with the fact that I spent almost every night working on a couple other Aria projects (which I can't go into too much detail yet, but I will).  Part of it was Thanksgiving craziness, of course, especially since we hosted this year.  Part of it is just the whole sadness emotion which makes me totally not motivated most nights.

(Part of it is that the "A" key on my keyboard is broken, which makes typing super annoying.  Do you know how often you use the letter A???  I mean hello, Aria's name is half "A"s on its own! I am resolved to buy a new laptop by Christmas.)

I have a ton of future posts pending (don't I always?) but here is the update on life in general:

I feel like we are a little worse off than we were the last time I blogged, 6 weeks ago.  Definitely still better off than we were right after Aria died, but still a "two steps backward" kind of thing.  I'm really not sure why.  Nothing really specific has happened to make this last month harder.  Although the onset of all the fall/winter holidays has definitely been a very blatant reminder that she's not here.  With Halloween came the start of "the holidays" in our home, which always starts with Halloween because that's my favorite holiday!  Definitely feeling the absence of our baby girl during these holidays as we are having to reconstruct what our original plans had been back when we thought we'd have a new baby in tow. . .figuring out a 3 person Halloween costume instead of the 4 person one I had picked out a long time ago. . .not taking pictures of Bennett and Aria at our annual Pumpkinland trip. . .pulling out all of Bennett's "Baby's 1st Christmas" stuff and feeling the pain of not needing one for Aria. . .etc etc.

We also just passed that point where last year at this time, I found out I was pregnant.  So now everything that comes up carries the reminder of "well last year when we did this I was pregnant" kind of a thing.

Maybe part of it is just the weather too. . .I always get kind of depressed in the cold.  I'm definitely one of those people that is much happier soaking in warm sunshine.

I know that part of it is that I am just lonely! (Which doesn't mean I'm just sitting around all day doing nothing.  I am busier than ever, but it's been surprising to see how lonely you can be at the same time)  Specifically - I miss my old friends!  I feel like I've lost a lot of close friendships since Aria died.  I don't think this is one of those things where our friendship is forever changed because my friends don't know how to handle my grief.  Maybe it is.  I don't know.  But I think a lot of it just has to do with distance now.  We only moved to Lehi in March.  Before that, we were in Spanish Fork.  So for example, I had two separate friends that I would see or do kid-swaps with like once a week, because they also had only one kid and coincidentally their kids were boys that were only a few weeks younger than Bennett.  So we were constantly chatting or texting or whatever and comparing where the boys were at and giving each other tips and stuff.  Coincidentally, both of them were also pregnant again and due a couple months before me.  I was ecstatic.  I figured once all the babies came it would be more of the same, just hanging out all the time and doing playdates and comparing stats.  Except that my baby died and theirs are thankfully healthy and happy and developing little personalities.  So not only am I much farther away now which already makes it hard to hang out, but I'm also in a much difference stage of life because I just have Bennett, and everyone else is catering to the demands of a newborn.  I have other friends down there too that I used to see a lot that I just haven't been able to see nearly as much since moving here.  And I haven't really made any "hang out" friends here yet.  I've been trying, it was just a lot easier in my old neighborhood where all the other women also only had one or two little kids and we could get together easily.  Here most of the families are a lot more established so the moms are busier because they have kids old enough to be starting school and stuff.  I'm still glad we moved here, I know without a doubt this is where we are supposed to be right now.  It's just one of those things.

Anyway, like I said, there hasn't been any specific event or anything to explain why we've been missing Aria more heavily recently.  I've just noticed a few things these past few weeks that indicate that we're going backward a bit.  I am back to crying super easy now whenever I think about her and honestly cry at least a little almost every day now again. We're not sleeping as well as we had been 6 weeks ago - although thankfully it's not as bad as it was when Aria first died.  Also, Bennett isn't sleeping as well either, which I find strange.  He had been doing really good at staying in his bed but suddenly is crawling into ours a lot again.  He also seems to be regressing just a bit on some things, or at least resisting learning skills that other kids his age are able to do and it's going to start causing problems soon.

I have been thinking about maybe trying some bereavement counseling (well for Bennett and I at least, I can't speak for Michael).  I've had a therapist before but that was a long time ago and we didn't do any kind of grief counseling after Aria passed away.  I think we just figured that we didn't need one, because although we were grief stricken we weren't like mad at God, or asking the universe "why", or clinically depressed, or anything like that - we were just very very sad and nobody could fix that.  But lately I've been thinking that maybe it's enough just to be so sad and to have someone else to talk to about the grieving process, especially now that it's been long enough that most people don't think to ask us about her and how we're doing much anymore.  I definitely appreciate everyone who does though.  I get at least one person every couple weeks who will randomly text or facebook or email me to say that they had been thinking about Aria and just wanted to let me know that she hadn't been forgotten.  I love it when that happens, it keeps me going for days!

Here's to more posts hopefully coming up soon. . .I do have quite a bit to catch everyone up on!

GoFundMe Rewards

We've been working hard with USU to finalize the scholarship.  We have just been so overwhelmed with everyone that donated to the cause.  As per the reward guidelines, the list below comprises everyone who donated $50 or more (in order of when donations were received).  Yes, there are a lot of "Anonymous" donors - rest assured, they are only publicly anonymous.  As the donation hosts we are still given all the details in order to send thank-you cards.  So everyone by now should have received their thank you notes.

In case you're curious, here's what the rewards looked like:

$100+ donors also received this card and wildflower packet.

I took this first batch to the post office a few weeks ago.  I took the last batch last week.  Hours of work, whew!

Here is the list of $50+ donors.  We appreciated donations of any size but per the reward levels we set up, we promised a mention on the blog to anyone who donated more than $50:

Ramon Castillo

James Phillips

Patti Sinay

Christine Bondi

Felicia Rolon

Christina McLauchlin

Anonymous

Anonymous

Anonymous

John and Sandy Rutkowski

Kelly Yonnick-Smith

Anonymous

Anonymous

Amanda and Joe Krisher

Lance and Sheila King

Anonymous

Kendrah Wick

Thom and Debbie Riddel

Anonymous

Anonymous

Ethan Edwin

Anonymous

The Edwards Family

Anonymous

Anonymous

Kristin Van Tassell

Robert and Jane Klock

Elsie Dharmaraju

Hila Parsons

Neil and Stephanie Esplin

Joel and Robyn

Anonymous

Patrick and Cindy Henry

Anonymous

Katie Bradford

Anonymous

Anonymous

Anonymous

Mariah Steenson

Anonymous

Davis Bell

Mark Severson

Anonymous

Elsie Rock

Anonymous

Jeff Sotelo

Linda Larsen

Anonymous

Daniel Wolf

Anonymous

Anonymous

Anonymous

Laura Langford

Anonymous

Anonymous

Anonymous

Brandi Wanstrom

Anonymous

Patrick Monson

Wendy Purdy

The Cranes

Anonymous

April Paladino

John and Jen Ketcher

David and Sara Moody

Daisy and Ramesh Murala

Anonymous

The Mitchell Family

Joey and Kavita Daniel

Natalie Olsen

Anonymous

Robert Parrott

John "Pop Pop" and Beverly Rutkowski

Ardi Fateh

Anonymous

Anonymous

Ashton and Mile Edwin-Kent

Aunty Lata Moses

Anonymous

Greg and Nicole Osier

Jonathan and Sharon Sandberg

Anonymous

Elyse Holmes

Brian and Allison Fawson

Anonymous

Anonymous

Derek and Shali Huntley

Anonymous

Jake Reni

Eric "Ted" and Marla Lind

The day Aria died: In Summary, and counting our blessings

Letting go of Aria is by far the hardest thing I have ever had to do (and hopefully, will have to do going forward!)  However.  I feel very blessed that out of all the ways Aria's life could have ended, it ended in the way that was best both for us and for her.  The question was not if she would live or die.  We knew she would die.  She was too sick to survive away from her life support machines.  The question was HOW she would die.  We are able to find comfort in the following specific blessings:

• Because we knew that eventually we would have to make the decision to withdraw support, we (including Bennett) were able to have a lot of therapy and preparation and education in order to make the hard decisions we had to at the end, and were given a lot of say in the details.
• Miraculously, Aria hung in there for 7 weeks.  She was very sick at the beginning, and very sick at the end, but the middle chunk where she was stable was time we will always treasure because that is when we really got to spend time with her.  
• Aria didn't suffer as she died.  She had plenty of pain medication so that she didn't feel anything as she left this world.
• Because she was comfortable as she passed, she didn't turn purple when she stopped breathing.
• Aria died snuggled in the arms of her mommy and daddy, instead of coding in her bed.
• Because Aria's passing was so peaceful we held her for hours instead of minutes - one of the most sacred experiences of our lives.

This summer we have known so much heartache and grief.  But if you were to ask if I'd wish it didn't happen and not have to go through the hurt?  I'd pick Aria.  Every.  Single.  Time.  We are so honored that she picked us.  Knowing we have her for eternity is definitely worth the hurting.  I know that she also had to suffer at times, but I hope she feels it was worth it too.  We love you, baby girl.

The day Aria died: Part 3

That HAIR!  I miss that silky head!

You can read Part 1 here and Part 2 here.

While I'm glad I was able to get so much written in the first two posts, it's been pretty emotionally exhausting.  So for today I picked a topic that will take much shorter to write (well, we'll see anyway).

I'd like to talk here about just a small degree of the turmoil involved in having a child with a terminal diagnosis.  Michael and I really struggled with how to decide what was best for Aria.  It is so terrifying to have someone's life in your hands, especially someone who can't speak for themselves to tell you what they want.  From about weeks 2-5 we were in a really weird place with plans for the future.  Aria had stabilized enough that we weren't living minute to minute anymore.  For the first time since she had been born, we started to wonder if we should start making long-term plans.  We even had mentioned on the blog (I think in the first post, actually) that we hoped to eventually take her home where we would have nursing help there.  Looking back it's crazy to think any of us ever got that optimistic, but even when faced when the bleak reality of her diagnosis isn't it natural to still hope for the best?

At that point it was just kind of a waiting game.  Just wait and see.  Before we could even seriously consider taking her home, we would have to put her through at least a couple surgeries.  Babies can't go home on ventilators so we would have to have a trach put on her.  And since trachs mess with your throat, feeding her by mouth would no longer be an option so we would have to have a g-tube put into her stomach.  In some ways it was a blessing to know so quickly that even in the best case scenario she wouldn't live more than a few years.  It helped guide us in how we wanted to spend what little time she did have.  We both agreed that we didn't want to rush and put her through those surgeries when really in the end all that would mean was prolonging her discomfort, especially since at home we wouldn't be able to attend to her every problem immediately the way they could in the NICU.  She wasn't strong enough for the surgeries yet anyway, so the doctors didn't really talk too much about them.  We just waited.  Waited for her to either improve enough that the surgeries became a viable option, or waited for her to get worse and take that option off the table completely.  The wait was both agonizing and beautiful at the same time.  I'm so glad we had that time with her, those middle weeks where she seemed to feel the best and we really got to know her little personality.
As you know, in the end Aria took her life into her own hands when she got sick, then stared coding the following week.  The decision about her future was made for us.  Even still, we were just sick to our stomachs those last couple weeks.  We knew what the right thing to do was, but STILL.  How do you knowingly say goodbye to your baby?  I know we surprised the doctors a little bit too - I know we waited quite a bit longer than most parents do after realizing that the only option is to remove life support and let their baby go comfortably.  We just were so heartsick about it so we were stalling.  Up to the very last moment I still worried that we could possibly be making the wrong choice.  Were we giving up on Aria too soon?  If we demanded she cling to life for a little longer would that change anything?  I knew that one day I would have to face my daughter in heaven, and all I wanted was to know that I had done right by her.

The entire morning of her last day, I just felt so sick.  I know I keep using that word - I keep trying to think of another way to describe it but that's really the best way I can think of.  It's like a palpable anxiety in your heart  - fretting over making the wrong decision, times infinity.  And this was a decision we would never be able to reverse.

.....So I just deleted like 3 huge paragraphs.  I realized I was starting to do a play-by-play that was more for my benefit than accomplishing my purposes.  I don't want to give that much detail on such an intimate moment.  think I gave enough information in this other post anyway about how peaceful we felt after she was gone.  We just knew without a doubt that we had done the right thing for her and that we would be able to stand straight and say that when we get to heaven.

I feel like I keep trying to describe something that may be indescribable.  Before she passed, I had anxiously asked all the nurses and others we knew who had gone through this same decision how they knew it was the "right" choice.  My cousins who went through this said it best "you'll always second guess yourself, but we know it was the right choice."  Even though we KNEW we were making the right choice for Aria beforehand, once she had actually passed we felt at PEACE about it.  Like. . .beforehand, we knew it was right, but now we KNOW it was right.  No doubts, no second guesses.  I know that doesn't make sense at all.  (If anyone has a better way to describe this, please leave it in the comments because I feel like I'm failing at this!)  I guess I can try to explain more like this - I wanted to feel that absolute peace about our decision BEFORE she passed, but it didn't come until after.  I don't know if that's true for everyone or not.  If we had felt the same peace beforehand we would have had no doubts and wouldn't have been in such emotional agony (maybe).  But I just don't think that's possible.  Which is no help to others who might be faced with such a decision, to tell them that they'll know it was the right decision after it happens.  But I have at this point read dozens of accounts of the passing of other babies, and they all talk about that same PEACE that was in the room after the baby passed.  I really believe that peace is actually a bit of heaven that gets poured out on us during such sacred events, and that is why it is so hard to describe because it is not a common experience.  The veil between earth and heaven is just so thin.

As I sat there holding Aria, I just had so much love for her and I was just so happy.  Which is an odd feeling to have when you're holding your baby who has just died.  Even though I was so sad, it was just such a beautiful experience.  I explained it to Mike and our nurse like this:  You know how you hear about how new moms have that surge of oxytocin right after birth and that's what sends them into such bliss as they hold their new baby?  Well, I was robbed of that with Aria's emergency c-section, and didn't even see her for days.  But I felt like I was finally now getting that rush of endorphins, because I was finally holding her and snuggling her without fear of hurting her and was so happy despite it being the saddest day of my life.  Again, it's hard to explain.  But I just didn't want to leave her because I knew once I left that room, I would never get that feeling back to the same degree.  The only regret I have about that day is that I wish I had held her just a BIT longer. . .but I was starting to feel these little tugs at my heart that maybe it was time to go.  I'd like to think that was Aria's sweet spirit in the room whispering to me "okay mama. . .we've had our snuggles, and now it's time for me to go do what I'm meant to do"  I know both of Aria's primary nurses stayed late after we left to take turns finally snuggling her too, and I hope it was as beneficial for them as it was for us.

As soon as we left the hospital, that magical feeling started to disappear and in the minutes, hours, days that followed the crushing grief returned.  Of course we are absolutely devastated by the loss of our daughter.  Hardly ten seconds go by that we don't think about her.  I still cry most days.  But at least among all the sadness is the feeling of "no regrets" - we know we made the right decision for Aria and that she can be happy now.  We may not get to feel that same overwhelming bit of heaven that we did that day cradling Aria's body after she died, but we do carry that peace with us.

I had expected to still feel very attached to her physical body after she died.  And I did/do, to a degree, but it has surprised me how much less I do than I expected.  I had a very difficult time leaving her the day she died, and really had to tear myself away.  But the next time I came in contact with her body, days later, was very different.  While I still loved the body that we created, her sweet little spirit was definitely gone.  It was good "closure" to the death experience and helped contribute to our long-term peace.


(**endnote: sorry this post was so fragmented. . .because I was too drained to write it all at once I had to do it over several days so it doesn't flow as well as some of my other posts)

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.

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.

The Moment

Monday October 6th, 5:15pm.

This is the moment.  The moment our daughter becomes more dead than alive.  Every minute going forward she will officially have been dead longer than she was alive.  It's just so incredibly sad.

Big Step

Today I was forced to make a big step.  I held another baby!  Not by choice, but I survived.  Phew.

I was with my friend and our kids and she went downstairs for a minute, and as soon as she left her baby girl (who was laying on the carpet) started to cry.  It was like a scene from a movie - I looked in dismay at the crying baby, then at the stairs where my friend had just disappeared, then back to the baby.

You see, I hadn't held. . .or even touched. . . another baby since I last held Aria, 6 1/2 weeks ago.  If I close my eyes I can still feel her little head of hair resting against my collarbone, that last day.  I haven't wanted to touch another baby for fear of losing that.  I have no problem being around other babies, I just don't really want to hold them.

But, I'm also not heartless.  So I awkwardly picked up the baby and bounced her around until I could give her back a couple minutes later.  I don't think my friend even realized anything weird had happened.  Thankfully though, her baby is 4 months old so it really didn't feel at all like holding my tiny newborn.  So my final memory is preserved.

The Aria Rutkowski Nursing Scholarship: What happens now, and how it works.

On Friday we met with Frank from USU to go over our scholarship contract!  Frank is, and will forever be, our contact there for all our interactions with them.  It was so exciting to meet with him to get things finalized!  Neither of us has any tie to USU so I know it seems kind of random, but we felt like that was the best choice for what we wanted to accomplish.  Michael did a lot of research and made a lot of phone calls before settling on Utah State for the scholarship.  The timing works out well for them too - apparently up until now their nursing program has been tied to Weber, but this year they split off.  Which means that they had to divide funding.  On top of that, they are trying to triple the amount of students they can accept into the nursing program each year because right now they can only accept about 3% of the applications they receive each year.  They are trying to expand their program to help prepare for the upcoming extreme nursing shortage forecasted for the year 2020.

Our meeting with Frank just really helped to cement our decision.  There were just so many little things that called to us.  For starters, Frank's daughter happens to be a nurse at Primary Children's!  So he hears the stories and understands our passion.  Also, the Emma Eccles Jones college at USU (which houses the nursing program) focuses on early childhood - how perfect since this is a tribute to our little girl.  Then, today while looking through the paperwork he gave us, I stumbled across a brochure detailing a new program USU has called Aggies Elevated.  It's a program for students with disabilities, the only one of its kind in Utah.  So perfect.

The scholarship endowment lasts in perpetuity.  What this means is that the scholarship NEVER ENDS.  USU takes the initial investment amount and puts it into an interest-earning account.  Each year, the earned interest is what is dispensed to the scholarship recipient.  We can add to the base amount at any time in order to increase the interest amount.  Right now there's enough for one scholarship a year.  Obviously we'd love to add to it over the years so that we can have more scholarships granted.

We are making the final touches on the contract then will turn that in within the next couple days.  If we want the scholarship to begin next year, we have to have everything done by November.  Thanks to all the wonderful people who contributed to the GoFundMe account, this is no problem!  All we have to do is make up the cost difference from our own savings and write them a check.  Students can apply for the scholarship in January, and in February a scholarship committee will choose a winner.  The scholarship committee will be made of people from the nursing college, who will choose a winner based on the criteria we have outlined in our contract.  The criteria is entirely up to us.  Isn't that cool?

So far these are the criteria we have in place:
1.  Student must be in their junior or senior year of school (firmly invested in the nursing program)
2.  Student must display a measure of empathy above that expected of a nurse (hard to measure, but will be assessed from things like their service hours and their personal essay)
3.  Student shows some financial need.

So a winner is chosen in February.  Then in April is an awards ceremony where donors are invited to present their scholarships to the recipients!  Then at the beginning of the fall semester is a dinner that all the donors and recipients are invited to in order to have a chance to meet again and really discuss the background to the scholarships.  We had no idea about those last two things, we thought the scholarship would be just a quiet, online affair.  How cool that every year we will get to talk with the scholarship winners and share Aria's story with them.  Hopefully it will inspire them as they begin their nursing careers.

One month

Stretching.  She always scrunched up her eyebrows and made it serious work.

It's been one month today since I lost my little girl, and ohhhh how I miss her.  I feel her loss every day, this subtle constant nagging that an important part of our family is absent.  It's been both the longest and shortest month of my life.  On one hand I'm sad that it's already been a month, that Time doesn't care and keeps carrying me farther from her.  On the other hand, we did it!  We survived a month.  One down, about 700 to go before I can hold her again.

Speaking of counting. . .while the grieving process is so fresh, there are so many dates and times that remind me of her. Little "anniversaries" of sorts.  She both was born and died on a Monday, so Mondays I always think of her.  Every Sunday feels weird because we're just at home all day, but when she was alive we would spend Sundays at the hospital talking to Jamie.  And often if I have to pump in the middle of the night, I find myself wondering if maybe Makenzie is on shift.  I suspect that as time goes on all those associations will decrease.  The first big accomplishment was when we made it 24 hours without her.  Then a week.  Every week was a milestone until now we have hit a month.  Twice a month, actually - she was born on the 30th and died on the 18th, so basically every couple of weeks is a date that reminds us of her.  I'm guessing that now I'll only count the month marks until we hit one year.  And after that I'll only count the years.

One thing that I've learned is that death is definitely harder on the survivors.  I don't think Aria is tracking Mondays up in heaven :)  We know that she is okay.  She is so much better off going back to heaven so quickly instead of having to go through a long earthly life.  But even though that's what was best for her, we still selfishly wish she was with us!  We still have a lot of hard days, or hard moments in a day.  I'm just so thankful that even at the base of the heartache there is peace.  I know we did the right thing in not insisting that she stay alive at all costs.  The costs were too great.  A few days after she passed, Michael gave me a blessing.  The first thing he said he felt inspired to say was that Aria wanted me to know that she was happy. Well, of course she is!  But it still made me cry with relief to hear that.  Poor dear doesn't need to suffer in an imperfect body anymore.  She's probably up there giddily running around enjoying perfect little arms and legs that work.  She worked so hard just to stay alive those last couple weeks.  No baby should have to work that hard.  So even though I am so devastated by her loss, I'm happy for her sake that she is finally comfortable.

The day she died, I was in such mental anguish all morning.  I couldn't stop crying and I just wanted to throw up.  I kept second guessing myself and asking if we were really doing the right thing by allowing her to go back to heaven.  I was just so afraid.  When she passed, it was sudden.  We thought we would have a couple hours to snuggle with her as she slowly faded, but instead it was only minutes.  She didn't fight it at all.  She was so ready.  As soon as I realized what was happening I scooped her up into my arms and nuzzled her head into my neck.  At that moment I just felt so much peace, more than I've ever felt in my life.  I didn't start to bawl, or hyperventilate, or any of the other reactions I wondered if I'd have.  I was absolutely devastated, for sure, but for the first time since she was born I knew with absolute certainty that we were doing the right thing for her.  Heaven felt so close.  I remember telling the NNP when she came in that I was surprised by how absolutely peaceful I felt.  She then said something very smart - she said to remember and cherish what that felt like, because as life went on there would be times where I would doubt again and that I needed to always remember how I felt at that moment, knowing beyond a doubt that we chose the right thing for Aria, what she wanted.  And I have.  While this past month has been so much harder than I imagined, I have never doubted.  She really was only waiting for us to be willing to make that sacrifice of letting her go.

I don't really feel her with me.  I've had a few people ask if I do.  Or I had another mom who lost a teenage son say she could feel his spirit constantly.  I don't really feel that.  I feel a general encouraging love from heaven, but never her specifically.  I'm hoping that I will eventually, that she'll "check in" from time to time.  But in the meantime I'm actually okay with it.  I think she's very busy in heaven doing good for others.  If I just felt her presence constantly I would kind of be like, "well if you're just going to be with me all the time anyway then you shouldn't have died, you should be here in a body that I can cuddle."

I got a card last week from some friends who apologized for taking so long to express their sympathy, and said that it must have been a very hard trial.  Um. . .it IS a hard trial, not WAS!  Yes, it's been a month, but at the same time. . .it's only been a month!  I think we're still pretty fresh in the grieving process.  And I don't think the death of your child is something you ever "get over."  It's kind of a lifetime heaviness on the heart, and we just learn to cope and do the best we can until we can see her in heaven again.

Keep waiting for us, Aria.  We sure love you.

Miss You

I'm missing my little goose something fierce tonight, so I thought I'd post a picture.

I took this picture when Aria was 6 weeks old, six days before she died.  When she was about a month old her hair started to go curly like her brother's.  I just loved the way little strands of hair would curl up around her headbands (for example, see the curl at the nape of her neck, behind her ear.  so cute.) 

I'm missing that warm little body in my arms.  And giving her smoosh kisses on those chubby cheeks.  When I would do too many she would get a little annoyed and wrinkle her face up.  I miss those pointer fingers that never seemed willing to relax like the rest of them.  

These have been a couple of harder days.  Last week I actually had a few days where I felt guilty because I didn't feel like I was grieving ENOUGH - I felt like I was slipping back into a normal life routine too easily.  Then over the last couple days I've had the opposite problem - hurting so much that I don't know how life could ever be normal again.  I don't know if that's because her one month mark is in a couple days, or if this is just the natural ebb and flow of the grieving process.  Probably a combination of both.

Choices, choices

I've always been a perfectionist which leads to difficulty making decisions (because I stress like crazy over the stupidest little decisions because I want it to be just perfect) but it's definitely reached a new level since Aria's been born.  I just really can't make any decisions on my own anymore.  Everything that has involved Aria has taken three times as long as it would take me normally.  Deciding on what we would all wear for our family pictures in the NICU, for example.  Or planning the details of her memorial service, When we did our KSL news segment a few days ago, I had 2 hours notice before they arrived at our house - you can imagine what that did to me!  My sisters had to come over to help because I was incapable of picking an outfit and doing my own hair.  

Which leads to last night's hilarity.  So my go-to sources when I'm stressing out are my sisters because they can usually help me reach a decision quickly that I know I'll be happy with later.  So I went to Michael's Crafts to get some supplies for the thank-you rewards for our GoFundMe donors.  I only needed 3 specific items.  It took me 2 hours because I just wanted each individual product to be the most perfect version of itself that it could be.  Then I almost had a nervous breakdown because I couldn't choose which size hole punch to pick!! I literally just sat down on the floor, called my sisters, and let them talk me through the choice until I came to my senses and didn't feel like the world might end if I chose the wrong size.  I mentioned something about that to Kav and she was like "hmm, I wonder why.  It's not like you guys have recently been through a traumatic experience or anything."  Haha.  Good thing they are understanding of the current state of my mind and not annoyed.

Aria's nurses

(I know I've talked a little about Aria's nurses before, but in light of the scholarship and KSL article I wanted to go into more detail.  It's taken me a week to write this post - not because I don't know what to say, but because I have too MUCH to say!  I could write 10 pages and still not be able to convey to you how much we love these ladies.  We owe them everything.)

These are Aria's primary nurses. . .or her "other mommies," as I've referred to them before.  Because it's true.  They spent just as many hours with her as I did during her life.  Gave her just as many baths. . .maybe more.  They were able to help her in ways that I couldn't.  Most importantly, they loved her fiercely.  They both asked to be a primary nurse for her because they had fallen for her sweet little spirit.  This meant so much to us because we had decided not to request a primary nurse for Aria - we knew how bad her prognosis was, and thought it would be unfair to ask a nurse to take that on.  But for them to make the request, even knowing there was no happy ending - that meant the world to us.

I knew Makenzie first - she started getting assigned to Aria a lot when she was first born.  Since Aria required a private nurse the first 3 weeks, when we would visit her we spent a lot of time just chatting with the nurse on duty.  So we spent a lot of time talking to Makenzie before she volunteered to be one of Aria's primary nurses.  Whenever we wanted to hold Aria, the nurses would have to page the respiratory therapist first so they could come help with the breathing tube in the transfer from crib to arms - I'll always remember how Makenzie would always cheerfully page the RT and say "hey, I have a baby in bed 6 and a mom here who would loooove to hold her!"  When she found out we were doing family pictures and I mentioned I didn't know what to do for Aria since she wasn't tolerating clothes at that point, Makenzie was the one who brought up the idea of a cute diaper cover.  Then she went one step farther and had her sister make one for me!  I will treasure it always.  I was touched when Makenzie requested to be a primary because I know how much she likes to snuggle with her babies, but when babies are on breathing tubes like Aria was, the nurses aren't supposed to move them around to rock and snuggle them.  So I knew how much Makenzie was giving up in this request.   She was very approachable - I always felt like I could talk to her about stuff without her judging me or the decisions we had to consider.  I was always worried about Makenzie because she'd only been working there for a year and didn't have much experience with working with terminal babies like Aria.  In fact, Aria was her first primary to pass away.  I was worried it would be too hard on her.  But Makenzie really handled everything great, I was so impressed.

Jamie kind of came out of nowhere a few weeks into Aria's life, but I'm so glad she did!  We walked in one evening during shift change and she was updating the nurse who was going to be on duty that night.  She was just so sweet and kind.  We liked her immediately, which was good since within 5 minutes of meeting her she told us she had requested to be Aria's primary nurse!  We were surprised but happy - Jamie had only had Aria for one shift before falling for her and making the request.  We couldn't even be mad that the whole reason we had shown up when we did was to help with bath night, but Jamie had already bathed Aria earlier just because she loves giving babies baths!  So cute.  Because Jamie mostly works days, and Makenzie still works a lot of nights, we ended up seeing Jamie a ton that last month.  She was so good at remembering details about our lives and, having older children herself, was great about offering support and encouragement when I would fret about having to constantly decide between my children since I could rarely have them in the same room together.  I came to absolutely rely on Jamie those last 3 weeks of Aria's life when we were making the decision to move her onto hospice care.  I don't want to say too much about that here.  But I'll just say that thanks to her nursing experience she was able to help us prepare for our Care Conference and other interactions with the doctors much better than we would have been able to do on our own.  Jamie had a great way of soothing my own fears while at the same time gently educating me better on the realities of Aria's problems and the types of decisions we were starting to have to make for her.  She was right there with us the entire day that Aria passed away, and I honestly don't think I would have been able to do it without her.  She cried right alongside us, then felt bad because she had said she would be the strong one for us.  But honestly it meant so much more for me to see those tears because I knew her love and grief for Aria was real.  Over the last couple weeks Jamie continues to text and check on me, even though Aria is no longer in her care!  Talk about above and beyond.

Makenzie was on shift too the day Aria passed, taking care of a different baby, but rushed in as soon as she heard Aria had passed.  She went so suddenly none of us had a chance to say a real last goodbye, and instead had to settle for cuddling her sweet little body afterward.  When Mike and I left the NICU that day, I gave my precious baby a last kiss and handed her to Jamie. . .I had always said that when Aria passed I wouldn't be able to handle it if I had to give her to a random nurse on duty (as great as they all are) - I could only bear to leave her by knowing I was leaving her with someone who loved her nearly as much as I did.  Jamie and Makenzie both stayed late that day so they could take turns finally snuggling Aria and taking care of some other things for her.  That evening I texted Jamie to "check in" on Aria for the first time ever - during her life, while I would often call the hospital just for an update, I had never called while Jamie or Makenzie were on shift because I absolutely knew that she was being taken care of with them.  And I've texted with both of them several times since Aria passed - because truth is, I miss them!  They have become just a huge part of our lives and will forever be part of Aria's story.  I knew they were taking care of Aria, but what I didn't realize was how much they were also taking care of ME until I no longer could just walk into the NICU and talk to them.  

We sure love these two.  Thank you for loving our Aria!

Further from you

The more time passes, and the more things get back to "normal,"  the weirder I feel.  I just feel like every step toward normal is a step away from Aria.  Some of these steps happened before she had even passed.  Yet they're steps we have to take.

The first step was when I got my csection staples out.  Did you know that I didn't even get any new stretch marks from Aria, since she was delivered so early?  And my old set from Bennett is really quite faint by now, so I really don't mind them.  In a weird way, I'm glad I have a csection scar.  It's the only lasting physical mark I'll have from carrying her.

The next steps were my general recovery.  I had such a terrible pregnancy that even while I was in the hospital recovering I felt better than I had the entire pregnancy (csection pain aside, of course).  I remember eating dinner in my hospital bed, feeling so guilty for feeling so healthy finally while my baby girl was so sick in her own hospital bed an hour away.

We went back to work.  That was a huge step. . .it meant we weren't hiding at home together grieving anymore.  We had to get back out in the world where people expected things of us again.

The nursery. . .I set it up and had it painted the week before Aria was born.  It's going to have to come down eventually. . .we're going to have to sell all our baby gear eventually. . .but I haven't had the heart to do it yet.

My hair has already started the post-partum hair loss.  I was surprised because with Bennett I didn't start losing my hair until 3-4 months after birth.  So I chopped my hair off right away instead of waiting for it to get worse first.  While normally this wouldn't be a big deal, this means I can no longer sport what I've come to call "The Aria" hairstyle- twisted bangs and a fishtail, obviously not named for her hair but because it's the quick and easy hairstyle I've worn nearly every day since having her.  Never wore it like that before and now I can't do it anymore.  I know it sounds like such a silly little thing, but again it's just one more little thing that makes me feel like I'm being pulled further from her.

"The Aria"

As I've mentioned before, I'm not completely weaned from my milk supply yet.  While Aria was alive, she was only able to take a small amount of the milk I was pumping.  Really, I could have stopped pumping after 3 weeks and we would have never run out of her milk storage.  But even toward the end of her life, when we knew she wasn't going to live much longer, I was unwilling to start the weaning process because I just felt like that would be giving up on her.  Then when she passed, I decided to wait a week to start weaning so that I wasn't dealing with the initial grieving process and weaning hormones at the same time.  And now. . .I don't know.  I'm dragging my feet, for sure.  I'm weaning myself, just probably a lot slower than I need to.  It's just kind of nice that for right now, no matter how busy or distracted I am in the day, there are a few times that I am forced to put everything else aside for 20 minutes and just sit and pump and think about my baby.  Just like with a regular newborn, you know?

It's just that these are some of the last signs that I've just had a baby and once these are gone. . .life is too outwardly normal again.

My pregnancy with Aria

This blog has turned into so much more than just a way to keep others updated, especially now that Aria has passed.  It's turned into her baby book, my journal and memories of her.  So that is why posts have become more personal.  I'm trying to write down everything I remember and feel before I lose track of it all.  

As I've said several times before, Aria was a surprise pregnancy.  Michael had been open to the idea of having another baby for ages, but as the mama who actually takes care of the baby I wasn't quite there yet.  We knew we'd have another eventually, I just didn't feel ready yet.  

The timing of things was interesting.  I'm not quite sure what my problem was, but last fall I was just having a hard time dealing with life in general.  I even wrote a blog post about it (don't go looking, you won't find it) where I talked about how I felt selfish because I really had a pretty good life but still wasn't really happy.  It got bad enough that at the end of November I started taking Zoloft, which is an antidepressant.  I was on that once before, several years ago, and the symptoms were starting to feel familiar.  On top of this, I was ready to tell my work that I needed to take a break for a couple months to see if that would help.  However, before I said anything they actually called me to ask if I'd be able to work MORE in order help with some decisions they had made for the company (I'm an office manager).  I actually really love my job and I loved the direction they were taking so I said yes but wondered how I'd be able to balance everything, knowing I was committing to a few extra hours a week for the next several months.

When I first started getting sick at the beginning of December I actually thought it was just a side effect of the medication (and no, Aria's problems don't have anything to do with that, the doctors are 100% sure. I also stopped taking the medication the second I found out I was pregnant).  I wasn't even on the normal dosage of the medication yet, I was still on the starter dosage that you take the first few weeks.  I remember being a little concerned that even that tiny amount of medicine was making me sick.  I didn't even consider it could be pregnancy until one day when I suddenly realized my period was several days late.  Even then, it took me a few more days before I went and bought a pregnancy test.  I was convinced there was no way I was pregnant, and taking the test was more just to put my mind at ease.  So when the test came up positive, I was shocked. SHOCKED, I tell you!  In fact, I'll do one better, I'll show you:

This selfie, taken minutes after seeing the test, has been my secret shame for the past 9 months.  But now I gift it to you.  See the utter terror?  Also, that might be a tear in my eye.  Ha, yeah.  Also as a sidenote, this selfie makes Michael burst into laughter every time he sees it.

I was terrified!!  And quite honestly, not immediately thrilled.  Don't get me wrong, I knew I would love the baby, it's just that for someone like me who is such a planner, this kind of surprise really shakes things up.  And I was already feeling so overwhelmed by life, I didn't know how I was going to be able to handle this too.  Also to be fair, there were a couple HUGE reasons why this caught me so off guard.  The first was that it took us a couple years of fertility treatments to get Bennett.  So to get pregnant without trying, while terribly cliche, was shocking.  The second reason was that I still, to this day, have NO IDEA how I got pregnant.  The dates just do not make any sense.  So with these 2 huge reasons for why I shouldn't have been pregnant - well now you can see a little better why we've believed so strongly right from the beginning that there was something special about this baby, a special plan that God had for us.  I'm so glad it happened this way actually - having that mindset right from the beginning, before we knew anything was wrong, is what has made everything a little easier to accept.  Although it's still devastating of course.

I took the pregnancy test while a huge snowstorm was raging outside, a little before Mike was due home from work.  I was so shocked at the result that I did the only thing that made any sense to me at the moment - I turned on a movie for Bennett, and went outside to shovel the driveway so Mike could pull in okay when he got home.  It took nearly an hour, and I spent the whole time in mental conversation with God, basically just bewildered by what was going on.  I remember telling Him that I knew that this baby was meant for us and that He must have a special plan for it.  Over and over, I prayed for God to help me handle everything "with grace."  I remember that specifically, and it's been interesting to see how often that word - grace - has come up since Aria's birth, by so many different people, and in reference to either me or her.  I definitely think that is one of the grand recurring themes of her life.  

As a sidenote, I also remember dimly wondering if I should be shoveling so much snow while pregnant :)

I didn't tell Michael I was pregnant when he got home.  Actually, I didn't tell him for a couple weeks.  I was just so surprised!  I needed time to absorb the news before I shared it.  Then, I thought it would be fun to wait and surprise him with that on Christmas.  We never made it that far though - I ended up having to spill the beans a few days before Christmas because I had been sooooo sick for so long and Michael was threatening to take me to Instacare.  I kept telling him the doctors couldn't help me and he didn't understand why and wouldn't drop it until I finally revealed what was going on.

My first pregnancy with Bennett was very tolerable - I was sick of course, but it was all pretty manageable and I actually felt super healthy the last half of the pregnancy.  I always looked back on that pregnancy fondly.  I was so much sicker with this pregnancy, more than I ever knew was possible, which led nearly every single person I knew to predict that it must be a girl (and of course, they were right).  I told Michael several times that this would be our last baby because there was no way I could ever be this sick again.  I never missed a day of work when I was pregnant with Bennett, but with Aria I ended up giving away all my regular work shifts and could barely drag myself to the trainings I had to be at.  I basically lived in the bathroom for the first 4 months because I could barely even open my mouth without throwing up.  Poor Bennett - I have no idea how he made it through that.  While I had never let him watch much tv before, now he basically watched movies all day while I laid on the couch next to him with a bucket.  I had Zofran prescribed to me but the side effects were almost worse than the vomiting so I didn't take it much.

In the middle of all this, we decided to move!  We had been toying around with the idea for about a year but finally made it official. We lived in a townhouse in Spanish Fork, but I knew that wasn't going to work anymore. We (I) needed a fenced-in yard where Bennett and the puppies could play without me having to be holding onto leashes or watching them every single second, and since our townhouse faced onto the main street in the community I knew I couldn't handle a newborn while still keeping the other littles adequately entertained, especially in the winter.  Plus Mike was currently spending about an hour driving EACH way to work and back and I knew that with a newborn in the house we needed to do better than that!

Life was crazy, and quite crappy, that winter.  Finally though, the beginning of March came and everything suddenly got a bit better.  We moved into our house.  Bennett and the pups LOVED the yard and seeing them so happy made it all worth it.  Mike's commute to Cottonwood Heights was cut in half.  I hit the halfway point of the pregnancy and FINALLY stopped throwing up every day.  Work was still crazy busy, but I was feeling well enough to take back my normal work shifts even.  We had our 20 week ultrasound and everything looked good with the baby.  We decided not to find out the gender this time around.  

The excessive sickness the first 19 weeks didn't exactly help endear me to this surprise pregnancy, but once I started feeling better that changed.  In fact, I remember exactly when it changed.  We were watching tv and there was one of those sappy commercial for Johnson & Johnson or something with a lot of tiny newborn babies.  I suddenly started thinking about how heavenly it was to snuggle Bennett when he was newborn, and how little and warm new babies are, and how they just fit so perfectly on your chest. . .and I thought maybe it wouldn't be so bad to have a little baby to snuggle again.  Plus I was starting to feel the baby move and that's one of my favorite parts of pregnancy.

From weeks 16-25, once I started feeling Aria move, I only felt her once a day, if that.  It was always around 10 or 11pm and literally only for a couple minutes.  It was so unusual because when I was pregnant with Bennett he was much more active and I'd feel him at regular intervals throughout the day.  I just figured every pregnancy was different and that as long as I was feeling movement at all things were okay. . .or maybe the baby was just in a position that didn't allow me to feel it moving as much or something.  As time went on though I started to get nervous.  Finally around 25 weeks she started moving more.  She only moved a little bit during the day, but as soon as I laid down to go to sleep she would be pretty active.  And strong!

Although the constant vomiting finally went away halfway through the pregnancy, I started having other problems.  I was so tired all the time.  I blamed that on the fact that I was HUGE - I already weighed as much as I did the day I delivered Bennett!  Since I hadn't been able to keep food down in 4 months which you would think it would tip the scale the other way.  My doctor thought I probably had gestational diabetes but when that testing came back negative we chalked it up to normal second pregnancy excessive weight gain.  Looking back now though I wonder if there wasn't more to it.  I also had horrible ligament pain that made it nearly impossible to sleep.  I was only comfortable sleeping on my back, which is a big no-no after the halfway point.  There were a few other things too but I'm going to stop with the details.  Let's just say I was crying daily not from hormones but because I felt so physically miserable all the time.  I was excited for the baby, but was counting down the days until I wasn't pregnant anymore.

Unfortunately, as you know, that came so much sooner than we expected.  Aria was delivered on a Monday.  The Thursday before that, things took a turn for the worse in my pregnancy.  I don't know how to describe it other than to say that my body just gave out.  Simple things like getting up and down from a chair were exhausting.  I worked on Thursday then came home and just crashed on the couch while Mike took care of Bennett.  Friday morning I only worked for a couple hours then came home - same thing.  Saturday and Sunday I literally was only awake for a few hours total each day, I mostly slept.  I literally couldn't keep my eyes open at times.  I was too tired to decide if I should be worried or not.  I had been busier than usual the last month so I thought maybe I was just overdoing it and my body was trying to catch up now.  I remember telling Michael that I really didn't think I could do this for another 6 weeks and him telling me that I didn't really have a choice.

Monday morning was my doctor's appointment, and you know the rest of the story from there.  (If you don't know, click here to read details about the day she was born and the events leading up to the decision to do an emergency csection)  The day after Aria was born, I felt so much healthier than I had at any point in the pregnancy, even though I was still bedridden and in pain from the csection.  That first week, the more we learned about all of her problems, the more things in my pregnancy made sense.  For example, because of her skeletal problems, she wasn't positioned properly in my belly which probably accounted for a lot of my ligament and hip problems.  Aria required life support right away, and even with that still struggled immensely.  I really believe that those last few days of being pregnant, my body shut down because it was working too hard to be her life support - it was doing 100% of the work for her of just being alive, where other babies by this late in the pregnancy had a pretty good grasp on that.  If my doctor hadn't gone with his instincts and did the csection, there's a good chance that Aria would have passed away in utero.  I hadn't been exaggerating how I was feeling when I had told Michael that I didn't think I could make it another six weeks.

Looking back, I can't deny that this pregnancy was legitimately a huge trial for me physically. What I do regret though is how much I complained along the way.  If I had known that the pregnancy would make up over half of my time with her on this earth, I would have accepted it much more readily and cherished the good parts so much more.