The Things I'd Like People to Know About Aria

(This is what Michael spoke about at Aria's service)

There are some things that we would like people to know about our daughter. Here is some of what makes Aria’s life worth celebrating.

First, she was not an ugly baby. Both Aria and Bennett had surprisingly nice faces right after birth. Even though her face was obscured by tubes and tape, we could see just enough of her to know she was a cute kid. When the end came and we were able to see her face unencumbered by tubes and wires, we saw clearly how beautiful she really was. Lots of people have mentioned that they think she looks like me, but I think that’s crazy. She’s good looking. That means she takes after her mom.

She did not like clothes. Aria was at her happiest and most comfortable in the nude. There were only a handful of times that we were able to get her into clothes and be comfortable. This went to the extreme too. She had these little splints to help with her thumb placement, and she’d somehow shake herself out of them.

Related to the nudity, she liked getting baths. We couldn’t put her in a tub or anything, but we could use soap and warm water and towels. She seemed to really like getting her hair washed.

Her hair is her signature. It had been an old wives tale that when the mom has lots of heartburn during pregnancy that the baby would have hair when they are born, until some researchers at Johns Hopkins University actually did find a correlation between heartburn and babies with a full head of hair. Natasha had so much heartburn during Aria’s pregnancy, much more than I ever remember with Bennett, to the point where it was difficult to find foods to eat that didn’t bring heartburn consequences. Aria’s hair is actually something we saw in a 3-D ultrasound, so we were not surprised when she was born with a lot of hair.

Orange is her favorite color. I promise you that my Syracuse roots had nothing to do with that. It just worked out. Some of her best hair stuff had orange accents and that’s how things happened. I feel OK about that.

She liked to poop for Natasha. It actually got to the point where it was really funny. At one point when she was sick and having some digestive problems there was some concern about the size of her stomach. Natasha arrived for a visit, and within minutes Aria, shall we say, suddenly didn’t have a stomach of such concerning size. I think it was a compliment. Aria understood that it was safe to relax with mama there, and so… poop happened.

She is extremely tough. It was not a sure thing that Aria would survive her first night. Her lungs were underdeveloped, and the left ventricle of her heart was not working. With medication and breathing assistance her heart and lungs started functioning a little better, and early on her improvement was a miracle thanks to the combined power of modern medicine and prayer. She fought through a lot of other difficult health problems, which I won’t detail in this setting, but I want to acknowledge that her struggles didn’t come down to any one thing, but a variety of different issues. Her little body hung in there long enough to get us a chance to spend time together as a family. I think she knew that was important to us and used the little bit of strength her body had to keep herself calm and comfortable and let us enjoy being with her.

She always responded to her brother, and would often open her eyes whenever he visited her and spoke to her. My aunt Joyce mentioned that she thinks their spirits recognized each other from before they were born. I believe that’s true. There was a connection and show of affection from Bennett that we didn’t expect, and Aria always perked up a little when her brother was with her.

She was a very sweet baby. Babies that have tubes in their mouths can’t really cry, but Aria rarely fussed or showed signs of agitation beyond a funny grumpy face she would make when stretching. The nurses often commented that she was a calm baby, and that despite all of the treatments and handling and jostling she encountered that she acted gracefully.

The most important thing that I’ve come to know about our daughter is that Aria is a teacher. I was taught once that effective teaching produces change. Aria is an effective teacher. She has taught our family things that are changing our lives for the better.

- Aria taught me that there were more people that cared about us than I realized. Within minutes of posting an update to Facebook about what was happening in our lives a humbling number of people came forward to let us know that they were thinking about us and praying for us, and offering to help in any they could. You expect that from family and close friends, but it started to grow from there until every time we updated anything several hundred people would comment to lend support. It got to the point where we really had to dig back deep in to our memories to figure out who some of these people were. I remember thinking that one guy that took a big interest in things is a friend I hadn’t spoken to since elementary school. People are often cynical about causes and movements on social media, but people chiming in helped us to feel that we weren’t alone, and we welcomed anyone that wanted to say that they cared about Aria in even a small way. It didn’t stop at people saying they would pray or would think about us. Many of them really did help in other significant ways.

- So, the next thing that Aria taught me was to accept help. My wife and I have often taken pride in being people that can be relied on to pitch in when others are in need. Until now, we have viewed ourselves as people that serve, and not those to be served. With how Aria’s life came to be though, it became clear very quickly that we weren’t going to be able to make it on our own. We have received significant support from our families, our employers, old and new friends, and our new community. Before, I think we viewed ourselves as people that could handle things on our own, and now we see that our independence was very fragile, and once we needed help, it was there. When I think back on the different stages of life Natasha and I have shared, someone from every one of those stages has been there and done something meaningful to help us. Many people from before Natasha and I started our life together have also helped. In some way, Aria’s inclusion in our lives has tied all of the different parts of our lives together.

- Because of that new connection binding all of the parts of our lives, Aria started teaching me something about life and time and people that I’m still trying to figure out. Aria had this thing about timing. She was actually a surprise pregnancy, and happened a little bit before we were thinking we’d be ready for another child. She arrived more than a month early. We loved her immediately. Because of the hours spent driving to the hospital and sitting bedside, she provided us with lots of time to think, and lots of time where we didn’t want to think. Her mortal life was only 7 weeks, but I feel she will always be with us and her presence in our lives has changed us forever. We believe that after we die we will be reunited with her forever. There is something to this theme of time that Aria left me with that I don’t understand yet. I’m not sure I’m meant to figure it out yet. But she has me thinking about the nature of time and use of time and relationships with other people that I hadn’t considered before.

- Aria reminded me of how to listen to the spirit. When Aria was born and it looked like she might pass away her first night, my father in law and I gave her a name and a blessing. Normally that happens in a church meeting, but in this case it happened bedside at the NICU. Before giving the blessing, I wanted to tell her that she could go back to Heavenly Father and that her work was complete, but instead I felt prompted to bless her that as she lived she would do so without pain or discomfort, and that she would return to her Heavenly Father soon. That was not the first time that I had an idea of what to say before giving a blessing, and once giving the blessing felt it was right to say something different, but this was on another level because it was my own daughter and I wanted her to feel OK if she left us. But I didn’t think that it would be smart to try to bless her with something that didn’t feel right, and the spirit was clear to me that it wasn’t time for her to say goodbye quite yet. I think we needed that confirmation from the spirit at that time more than Aria.

- Aria taught me to love more. Thanks to Aria, there is so much more love in our family. I love my wife Natasha more. She has handled these challenges with such grace, and it has reminded me of how incredible a woman I married. I now enjoy a much closer relationship with my son Bennett. We have learned to rely on each other when before he was content to look to his mama for every need. I wouldn’t have expected a three year old to be a source of strength for adults, but his cheer and excitement have inspired us to continue to see the bright sides of life. He is a good little guy, and we could not ask for anything more from a son, and Aria has helped me to have a much stronger relationship as father and son with Bennett. He is a precious soul.

- Aria taught me that she accomplished everything that she was intended to do in this life, and that I have a lot more to do. Many people that heard her story now care a little more for their family members. Some people have been reminded how to pray. Some people have done just a little more to help someone in need. Some others feel more grateful for their health. She has obviously brought our family closer and has changed our lives for the better forever. I think the circumstances of Aria’s life have helped us all to think about what really matters, and she’s helped us to be better people for it.

Natasha and I believe that the gospel of Jesus Christ accounts for children like Aria that are only on this earth for a short time. We all need to experience mortality and have a mortal body, but most of us also need to learn and grow and be challenged and overcome our weaknesses. The pure ones though, they’re allowed to teach us for a short time and are then called home. They set a standard of goodness and innocence for the rest of us to try to live up to. If we can live up to that standard, the Savior makes it possible for us to be together as a family again. Natasha and I already look forward to the time when we can hug our daughter again.

I know that Aria fulfilled the mission that she was given before coming to this earth. Sadly, we are close with another family that also lost an infant. When we spoke with them about how to handle the challenges and uncertainty we were facing, they told us that before their child passed they felt inspired to give their child a blessing, to help their child know that it was OK to return to Heavenly Father. On Aria’s last day, Natasha reminded me about that blessing, and asked if I could give Aria a similar blessing. This time during the blessing I felt at peace and knew that it was time to say goodbye. It was then that the Spirit confirmed to me it was now time to tell Aria that her work was complete, and that Heavenly Father and the Savior and many other family members and friends were waiting to greet her again on the other side. The blessing that I had wanted to give our daughter the first day of her life had come - she had done all that she was given to do, and her heavenly rewards awaited.    

I told my parents one day that Aria is a shooting star, because we knew her life would be short but her life had so much visibility to so many people. We’ve realized since then that she doesn’t have to be a shooting star. There are ways that we can help Aria to have a legacy of service.

During Aria’s short life, she and Natasha received exceptional care from many nurses. They are the unsung heroes in this story. We are hopeful that other families that encounter the challenges and loss that we have will receive the same level of care. In order to help ensure that care, we are currently working to establish an endowment for a scholarship fund for nursing students in Aria’s name. Once we have the details figured out, we’ll make an announcement and make this scholarship happen.

I want to thank you all for being here. We don’t know how to feel right now. We are crushed, but we feel so loved and supported. I hope that Natasha and Bennett and I are living up to Aria, and continue being better people because of our daughter. There are still times when we’re going to struggle, a lot. We still need your love and prayers. We also want to be there for you when you’re in need. I don’t think that any of us have a way to find happiness without each other. As hard as it is now, I don’t think Natasha and I had a way to happiness without Aria. Thank you all again for being here, and we pray that you are blessed for being the good people that you are, and I ask this blessing in the name of Jesus Christ, amen.

What you don't see

I've had so many people tell me how much they admire me for being so strong.  How I'm amazing, how they would never be able to handle a tragedy like this as well as I am.

Let's talk about that.

I don't feel amazing.  I don't feel strong.  I feel like everything I am has crumbled into a million pieces, and I'm just carrying those pieces around, trying to get through the day.  You don't see how I sleep all morning, then lay awake in bed at night trying frantically to remember every moment I had with Aria.  How terrified I am in knowing that as time goes on the memories will become dimmer, because she was only alive for 7 weeks and those few weeks have to last me a lifetime.  I don't want to forget.

You don't see how I can be playing and laughing with my son one moment, then bawling my eyes out the next with no real reason.  Or how I barely eat because food holds no flavor anymore.  Or how I sit alone in my living room in the middle of the night pumping milk for my baby who will never drink it, because I'm not completely weaned yet and can't sleep through the night comfortably.  Or how I wander around looking lost in my own house.

You miss the hollow look in my husband's eyes when other people express their condolence.  And the discussions I have with my toddler when he asks why he can't see Aria anymore.  You weren't there after the funeral when we were packing all the display things up, and I suddenly had a panic attack asking where her little handprints and footprints were and couldn't calm down until they unpacked enough things in the car to show me that they were right where they said they were.

Unlike most people on earth, I don't WANT to live a long life.  Never cared much for the idea of getting very old anyway, but now more than ever I feel like I just have to tolerate the next 50 years until I can die and go be with my baby again.  I am living that old cliche of "one day at a time" because if I start thinking about how I have to spend the rest of my life without her I get hysterical.

The grieving process is no joke.

You read it in my letter to Aria, but I'll say it again:  the ONLY way we are surviving this is because of our belief that there is something after this life, that we WILL see Aria again.  If I didn't believe that, there would be no point to living anymore.  I have no idea how people live through tragedies like this without that belief.

That said. . .while that knowledge helps long term, it doesn't lessen the pain any.  I know that as time goes on the hurt will sting a little less.  I don't know if that makes me feel better or worse.  We're just trying to go on with our lives because that's the only thing we can do.

My letter to Aria

(this was the letter I wrote to Aria and read at her funeral)

My sweet little Aria,

How am I supposed to say to you in one letter all of the things I wanted to say to you over a lifetime?  For the last 7 weeks, you have been the first thing I think about when I open my eyes in the morning, and my last thought at night.  We gave up everything else in our life except you and Bennett, and split our time between the two of you.  Every day, I spent every minute I could with you, and it was still not enough.  It will never be enough, because now you have left this world as suddenly as you entered it. I’ll never again be able to kiss those chubby cheeks, or hear your soft snoring as we snuggle in the middle of the night, or look into those eyes of yours that always seemed to stare straight into my soul.  I have a physical ache in my heart where you’re supposed to be.  I love you more than I ever thought possible.  How am I supposed to go on without my baby?

While it doesn’t make the hurting any easier, the one thing I can find a small bit of comfort in is the absolute knowledge I have that this was heaven’s plan for you.  All anyone had to do was to just look at you to know that you were too good for this world.  All along, you and God had your own little agenda.  When I found out I was pregnant, I was so surprised that I didn’t tell anyone for weeks, including your Daddy.  I spent that whole first day praying that Heavenly Father would help me to handle all the upcoming changes “with grace.”  I remember specifically praying asking for help to be a better person, to be worthy to mother whatever special spirit he was sending to us, because this obviously was all His doing and there were greater things at hand than Daddy or I could have planned for.  We surprised everyone when we opted to not find out if you were a boy or a girl at the ultrasound.  Honestly, it just didn’t matter to me this time.  I knew from my experience with Bennett that God was very good at giving me what I really wanted instead of what I was asking for, so it didn’t matter what my preference was because whatever you were was perfect. 

Whenever people asked why we weren’t finding out the gender, I would joke and tell them that you might as well be a surprise from beginning to end.  What I didn’t know then was how many more surprises you actually had in store for us.  The surprise emergency c-section at 34 weeks made the gender surprise seem like nothing.  Then came the information about all of your health challenges.  Then the fact that you were willing to hang around for a little while until we were so head over heels in love with you that we didn’t want you to ever leave us.  Then finally, the last surprise, when I finally had the courage to look you in the eye and tell you that you didn’t need to suffer anymore - and you were gone within minutes.  You were only waiting for us to tell you it was okay to go.

I told your Daddy several times during the pregnancy that I was excited for you to be born because I was very curious to meet this baby that we knew without a doubt was meant for us, and meant to come at this time.  Aria, I have no idea why you chose us.  There is nothing special about us.  I’m not the bravest, or the kindest, or the strongest.  But maybe you knew that nobody else could possibly love you more than I do, and that was enough.  I am going to spend every minute of the rest of my life trying to be good enough for you.  I am not going to do anything to lose the chance of holding you in my arms again in heaven.  Please wait for me.  I love you so much.

Love, mommy

Aria's Memorial

Our little Aria returned to heaven on Monday.  We are having a memorial for her tomorrow, Friday August 22nd, at 10am.  All who have been affected by her life are invited.  It will be at Stone Gate Center for the Arts in Pleasant Grove (886 W 2600 N, near the temple.)  Please let us know if you are coming so we can have enough chairs.

While in the NICU we found there is a severe shortage of cute hair things for the babies! Especially since they are not allowed to reuse them once a baby has worn them. Nearly all of Aria's numerous hair things were given to us by friends. We are asking that anyone who feels inclined bring a NEWBORN size headband or itty bitty hairclips to the memorial. We will have a donation box for those that we will take to Primary Children's afterward. Thank you in advance for helping to make things just a bit happier for other mommies of NICU baby girls 

Care Conference

Last Monday we had a Care Conference with a lot of the key players involved in Aria's care.  So we met with the attending doctor, the nurse practitioner, our primary nurse Jamie, our social worker, and a couple members of the palliative (hospice) care team.  Our main purpose in meeting with them was to make sure that we had a clear understanding of her condition and what that would mean for her future. We had been in kind of a "holding pattern" as one of the nurses put it for a couple weeks.  Aria would have good days and bad days but overall wasn't really progressing in any meaningful way.  Everyone was still really careful to use the word "if" when we would ask questions about possibly taking her home someday.  It just didn't seem like there was any real plan that we knew about, basically the hospital was just treating problems as they arose and that was it.  I was starting to get concerned that we may be extending her life in ways that weren't best for her.  Since we had expected her to pass away the night she was born, we had a fairly realistic knowledge of how bad her prognosis was and doctors had mentioned the whole "Quality of Life" thing right from the beginning, so it was something that had always been on our minds.  We knew it wasn't a matter of if she'd make it or not - it was a matter of when her problems would take her from this life, because we knew that even if she came home someday she would not last long.  With that in mind, we wanted to have this discussion with Aria's team because we wanted to make sure that we were doing the best thing for Aria.  We wanted to make sure that when she passed she would be comfortable, and that it wouldn't happen in some traumatic unforeseen way.

We hadn't really said anything to each other yet in regards to what the future may or may not hold for her, but at the end of July I just started feeling like we needed to have a plan of some kind.  After all, she was a month old at the end of the month but still had no idea what was happening. Especially when she got that infection and we were worried that might be what took her. So I started asking some questions to the neonatal nurse practitioner one day and that prompted the Care Conference.  Our main purpose was to determine if they thought she had any chance of a life worth living, basically.  If yes, then we wanted to get a plan into place so we could get her home as soon as possible.  If not, then we needed to discuss moving from a "fix all problems" treatment to just comfort care.  I knew that the hospital's job was to FIX, whether or not it was the best thing for her, and that we would have to actually tell them otherwise in order for them to have the permission they needed.

Going into the Conference, we were both pretty conflicted about what was supposed to happen.  When Aria was first born and we thought she was going to pass away that night, we both felt very strongly that even though that was horrible, that was what was supposed to happen and that she wasn't meant to last in this life.  So the fact that it was a month later and she was still with us was very confusing. . .did we misunderstand what we had felt?  Or was that true at that time, but now things had changed?  Were we now to take her home and take care of her?  We just didn't know anymore.  In preparation, we went to the Jordan River temple.  The question I kept praying for answers for was basically - is this still supposed to be a hospice situation, or should we instead do everything we can to extend her life for as long as possible?  The temple was great (I felt so guilty though because we hadn't been there at all during my pregnancy since I was so sick).  Coming out of it, we were still conflicted, but both felt very at peace, and felt that the big answer was that no matter what happens it would be okay.  We had gone to the temple in the evening and had planned to drive to the hospital afterward for a late night visit.  As we were driving we were discussing what we were feeling, and Mike was starting to say that maybe we should look at going ahead with the surgeries she needed so that we could bring her home.  Right then I got a call on my phone from the hospital saying she was sick with an infection and had problems breathing and that they were concerned about her being strong enough to fight it.  So we rushed to the hospital and stayed with her late into the night until we felt like she was more comfortable.

Driving home we mused over the timing of this acute sickness, but weren't sure how much we should read into it.  After all, even healthy people get infections every so often, right?  So we planned to keep moving forward with trying to figure out what was best.  That weekend was Fast Sunday and we asked our extended families to participate in a family fast for Aria, specifically to help us know what God's plan was for her and that we would know more clearly how to proceed.  I don't know about Michael, but all during my fast I was praying and telling Heavenly Father that while we felt at peace about things, we still didn't know what we were supposed to do, and could he please make it blatantly obvious so that I wouldn't go through life doubting myself either way?

The Care Conference was the next day.  The attending doctor began by giving a medical summary of her life up until now to make sure everyone in the room was on the same page.  Then he gave us his best prediction for what her life would look like going forward.  I remember he started out by saying "at any rate, we would expect her to have a very difficult life."  He stated that he believed she would always need to be dependent on some kind of breathing device as well as always being dependent on a feeding tube.  He didn't expect her to ever walk or even sit up due to her skeletal and muscular problems.  Her brain function, because of the calcifications, would be severely limited (as it has been explained to us, the major factor is that her brain is not conveying commands to the rest of her body).  She would require multiple surgeries in her life, the first set of which would be required in order to even take her home (a tracheotomy and a gtube for food).  He also said that she would likely have multiple hospitalizations throughout her life.  She would likely always be on multiple medications.  They would not expect her to live more than a couple years, or past early childhood at the latest.  What would ultimately kill her would be the same things that would cause the hospitalizations through her life - pneumonia due to her breathing problems, blood pressure issues, or seizures that we would be unable to control through medication alone, just to name the big ones.  At some point in her life he expected that home care may not be sufficient and that she would need to be moved into some type of long term care facility.

Well.

That was obvious.

Mike and I just kind of looked at each other for a second, and I could tell that he realized too the direction that this discussion now needed to take.  So we began asking questions about hospice care.  Basically there are two choices - hospice at home, or hospice in the hospital.  We both felt that we wanted to take her home if possible.  We wanted to be able to just hold her all day, every day, at home surrounded by her family.  However, there are some significant barriers to taking her home.  She is not allowed to leave the hospital on her ventilator.  So we would either need to have a tracheotomy done, or she would need to get to the point where we could try high-flow nose tubes instead.  If she required a tracheotomy she would also require a g-tube surgically put into her stomach for food.  Mike and I were both in agreement that we didn't want to put her through any surgeries just for the sake of having her an extra few weeks, or however long of a time they bought us.  So we were hoping that once she fully recovered from her infection we could try nose tubes again and if she did well then we would take her home on hospice care.

Since then we've just kind of been watching and waiting.  In the meantime we have been having several meetings with the hospice group to better define what our goals are for Aria as we move in this direction, and for them to help us understand what to expect, no matter if we take her home or if she stays in the hospital until the end.

Aria's nurses

At the hospital, nurses work in 12 hour shifts meaning that Aria has had dozens of different nurses in her short life!  We have really loved the nurses in general but there are definitely a few that stand out.

Aria has what is called a "primary nurse."  Actually, she has two of them.  If a family really likes a particular nurse, they can request that the nurse become their primary nurse, meaning that every time that nurse works they are assigned to that particular baby.  While we liked the idea of that, we had kind of decided not to request any particular nurse for Aria because she has such a terrible prognosis.  We didn't feel like that was fair to ask a nurse to take her on knowing that she wouldn't see any improvement.  It's hard enough for us, we didn't want to do that to someone else.

Three weeks ago, we went to visit Aria and met nurse J for the first time.  We really liked her, but were floored when she told us she had requested to become Aria's primary nurse.  She had made the request after only one shift with Aria!  Of course we said yes - we explained our reasons for not requesting a primary, and J basically said she understood Aria's prognosis and wanted her anyway because she was such a sweet little thing.  We were thrilled!  We couldn't even be upset that the whole reason we had gone at that time was to give Aria her bath, and J had already done it earlier just because she likes giving babies baths!  Adorable.  The more people who can love Aria the better.  I have really become so dependent on J.  Today she told me that she just loves Aria so much so she can't even imagine how much I love her.  She has just been amazing and is our stable rock at the hospital since the NPs and Attending doctors change regularly according to the rotation schedule.

Her other primary nurse M did the same thing - made the request herself.  We actually were familiar with her because she had been assigned to Aria several times before.  Since her request went through second, if her and J are ever on shift at the same time then J will be assigned to Aria.  M is quite young, pretty newly married it seems, and is just totally an open book.  I really like her but am definitely nervous on her behalf because she definitely hasn't had as much experience as J with babies with bad outcomes.  So I'm hoping she can handle this okay.  We definitely love both our nurses though.  I'm never worried about Aria when one of them is on shift.

Bennett cooing over Aria

Bennett talking to Aria

Snuggling Aria

I am so grateful that if I want to snuggle my son, I just go like this:

I LITERALLY just now grabbed my camera and took this selfie while tucking him in, to prove how easy it is.

If I want to "snuggle" Aria, I have to do this:

1.  Car Ride.  45-60 minutes each way depending on traffic.  Poor Bennett, most of his naps take place in the car these days:

2.  Lots of walking from the parking garage up to the 4th floor of Primary Children's.  We take the stairs because there is construction in the hospital and there's only one working elevator.

3.  Drop off any milk I have to the NICU milk freezer.  Everything has to be bagged and tagged appropriately or they are not allowed to use it.  (she sometimes can tolerate milk through her feeding tube, it's been about half and half so far)

4.  Pick up the phone outside the security doors to the NICU and wait for security to identify us and buzz us through.

Not the phone on the left.  The one on the right.

5.  Put our things in a locker and scrub in.  If we leave her for any reason we have to re-scrub before coming back.

Even Bennett has it down.  Look at him scrubbing both sides of his wrist!

6.  Hope against hope that she is stable enough today that we are allowed to touch her.  Sometimes even just touching her causes too much stimulation and makes her blood pressure go crazy.  Every once in a while, if we're incredibly blessed and we have at least an hour of solid time to be with her (instead of being constantly interrupted by doctors) then she is doing so well that today we can hold her!!!  In that case, we stand there feeling helpless for 20 minutes while a team of 3 nurses/respiratory therapists figure out how to move around all her machinery so that all of her wires will stretch far enough.  The alarms on everything are constantly firing off during this process which usually makes me cry.

She was getting an EEG this day. . .hence the skull cap and the extra 100 wires!

7.  Another 10 minutes of them adjusting all her tubes and ventilator once she's on our lap.  Then we basically stay still the whole time we're holding her, although every time her alarms go off the nurse comes over and adjust her setup some more.  Then reverse the whole process when we put her back.

BUT.

It is totally worth it.