Aria's Life in Review: Day 50 - August 18, 2014. . .The day she became an angel

Mike, Bennett, and I had slept at the hospital the night before, then we had the family room reserved this day so we could have privacy on Aria's last day.  

I love this picture of Mike and Aria - I told Mike that Aria's hair was lightening up to be closer to his shade, so he tried to compare.

We spent some time as a family for the last time, then sent Bennett home with my sister after he said his goodbyes.  He left her with a "hug, kiss, and tickle" on her tummy which was his thing at the time.  It was cute and endearing.

(taken just minutes before she passed)

In the early afternoon, Mike gave her a blessing, and her medical team came to take her off of life support.  Without going into details, she passed from this world pretty immediately.  Although we had not expected her to go quite that quickly, it was somewhat reassuring that we had made the right choice in not trying to force her to live when she clearly was done.  She had a foot in death's door ever since she first crashed a few days prior, and we just felt like it was cruel to demand she be kept in this world.  Even still, making the decision to let her go was, and I hope will always be, the most difficult decision I have ever had to make.  Even knowing it was the right decision didn't make it any easier.

We spent a few more hours with her before we left her forever.  Walking out of that room for the last time was equally as hard.  I will always treasure that first and last time I had to hold her freely, without wires.  We just love that little girl so much.

Aria's Life in Review: Day 49 - August 17, 2014

Since Aria hadn't had any scares the day before, I felt ok going to my sister's house 15 minutes away to sleep, instead of sleeping at the NICU again.  When I got back to the hospital the next morning I found that our primary nurse had gotten Aria all dolled up for her visitors today!

 I love how some of the nurses were able to do some cute things with her hair during her time there.  I never knew what to do with it!

We had gotten special permission to reserve the family room so that our immediate families could come say their last goodbyes.  We didn't let anyone hold her there because we knew just having that many people in the room would be plenty of stimulation.

We spent most of the day with her at the NICU. . .and the night, too!  Because of the circumstances, our nurse was able to get a room one floor down in the Ronald McDonald housing.  So for the only time ever, our family was able to all sleep in the same building!  Funny how in normal life we take that for granted.

(my view looking down at her snoring away in my arms)

I stayed up late with Aria having some good bedtime snuggles.  She was wearing a cute little sleeper her night nurse had found in the NICU collection.  I didn't start visiting Aria much at night until the last couple weeks, and I regret that.  Bedtime snuggles are where it's at!

At midnight I finally gave in to the sleep and went down to our family room, where I found my boys already sleeping away.  So then I pumped and showered and finally got into bed around 2am.  Totally worth it to have my family all together.

Aria's Life in Review: Day 48 - August 16, 2014

I had slept at the hospital the night before, so when I woke up I got Aria dressed in the one outfit I had found that met all the criteria (with matching headband, of course!) I sent the picture to Michael.  This is actually his favorite picture of her!

We tried to get a bunch of people in to hold Aria today - knowing she only had a day or two left, we wanted to make sure our families could at least hold her one time.  My brother-in-law, Mike's parents (who had flown out and arrived today), and my parents all got to hold her for the first time today.  That was way more than we'd normally permit, but we knew that we were running out of time.

Aria's Life in Review: Day 47 - August 15, 2014

I usually woke up around 5-6am to pump milk, so since I was up anyway I decided to call in to the NICU and check on Aria.  I talked to her night nurse who told me that Aria had crashed again during the night.  They were able to revive her quickly enough that they didn't call us and wake us up, but still significant. This just reaffirmed that we knew Aria was no longer meant to stay.

After 2 close calls in a 24 hour period, we decided one of us should be with her at all times until she passed.  We decided I should sleep at the hospital that night.  We were lucky to have that same night nurse 3 nights in a row so I got to spend a lot of time talking to her.  When I arrived that evening, that nurse was giving Aria a bath.  Although at first glanced she seemed to be sponging her pretty roughly (I was always afraid of hurting her or a wire though so I always bathed her super soft), one look at Aria showed me that she was actually loving it!  She was in total bliss.  I even took a video because I don't know if I had ever seen her that happy before.  She did love her baths though! It was the first little bit of happiness I felt from her since she had coded the day before.  I know it doesn't make sense to most people how we could sense her different emotions from a baby who appears to be sleeping most of the time, but it's the same as with any newborn - you get a sense for what they're feeling very quickly when it's your own child.

Right before visiting hours were over, my sister and brother-in-law ran in.  They had been in CA that week and weren't supposed to come back for a couple more days.  However, I had updated Kav about Aria's code the day before, and then that morning when she found out about the 2nd incident, they hurried and packed up and were on the road within half an hour to come back.  So of course we had her hold Aria, and our night nurse was awesome and let us sneak my brother-in-law in the room too (normally only 2 people are allowed bedside at a time).  Aria had her eyes open a lot but looked so sick.

Aria's Life in Review: Day 46 - August 14, 2014

This day. . .this day was a hard day.  This morning I walked into the kitchen to find Bennett talking on the phone to someone.  Apparently my phone had rung while I was in the other room and he had picked it up.  We have been trying to teach him to bring the phone to us instead of answering it himself, but that small act of him answering the phone may have kept Aria with us a few days longer.  

When I took the phone from him, I saw it was Primary Children's.  This was not unexpected, because they would usually call once a day with an update.  So I figured that's why they were calling.  I could see that Bennett could have been talking to them for as long as a minute, so I was embarrassed and started apologizing to our NP who was on the other end.  That's when she interrupted and told me that she was actually calling because Aria had coded (flatlined) and had called to find out if we wanted them to go against our written wishes and use extreme measures to save her, or to let her go. . .however, by the time I picked up the phone from Bennett, their efforts at stimulating her body to respond has started to work, and her heart had started beating again.  At that point she had to get off the phone quickly to assist, but made it clear that it looked like we were okay for now.

I was absolutely sick the next couple hours until we could get up to the hospital.  Because Aria had already had all kinds of crazy life-saving measures taken the day she was born, we didn't want her to have to go through that pain again knowing it was just a temporary fix, so we had decided to just let her control when she'd return to heaven.  If I had answered the phone right away while she was flat-lined, I probably would have told them to make sure she was comfortable and let her go, and she'd be gone.  I really think that this was all part of a master plan to alert us that we were at the end, and give us a couple more days to say goodbye to her.

It's crazy how fast she suddenly turned.  Just the day before, we had met with our primary nurse and the NP who wanted to talk to us about how well Aria was doing with her oxygen and that maybe we should try moving to the nose tubes again.  Of course, once she coded, nobody was talking about that anymore.

Those last couple of days were special and heartbreaking at the same time.  As soon as we got to her that day after she crashed, it was clear there was a change.  Those last few days she never seemed fully herself and seemed to just hover between life and death, just barely hanging on.

That evening I was supposed to go to a Girl's Night with some girls from our old neighborhood.  I was actually really looking forward to it, but of course after Aria crashed I had to tell them I was out.  Late that night one of them dropped by a bag full of headbands and this cute bracelet!  They had planned to give them to me at the party.  They told me pick out my favorites and give the rest to the NICU (the source for my idea later on to collect headbands at her funeral, I just thought that was the best idea!)  This pink flower headband remains one of my favorites.  Before having Aria, I always thought pink was too cliche for a girl but I had to admit it looked cute on her!

Aria's Life in Review: Day 45 - August 13, 2014

Aria had never really seemed to bounce back all the way after her bout of infection, and all her doctors and ourselves had the feeling her life might be drawing to a close.  So Michael and I decided to start letting other people hold her.  Up until now, we had been the only ones.  This took some sacrifice on our part, because she could only handle so much stimulation, so by letting other people hold her that meant we held her a little less.  We felt it was important though to let our families have the chance to hold her.  We knew they all were in love with her too.  So tonight after Mike was done holding her, she was lifted out of his arms and into my sister Ayisha's.  She didn't know beforehand we were going to do that so it was a good surprise.

Aria's Life in Review: Day 44 - August 12, 2014

We had started inviting extended family to come see Aria.  Today my aunt and uncle came, and my aunt brought this cute headband she had made.  I like it, I think it looks like a little fairy wreath!

Aria's Life in Review: Day 43 - August 11, 2014

Today's big event was a new bed for Aria!  It was all new and shiny.  And it brought Aria down a couple inches which made it so much easier for Bennett to reach her, so that was awesome!

Also, today I had an interesting thought when I looked at Aria.  She opened her eyes while she was turned toward the sunny window, and to my surprise they were reflecting blue back at me.  The picture does it no justice.  It wasn't the light, icy blue gray of Bennett's eyes - it was a deep midnight blue.  I wondered if there was any chance that her eyes were starting to turn blue too.  It made me a little sad though because we knew she was nearing the end of her life, and I'd likely never find out the answer to that question.

Aria's Life in Review: Day 42 - August 10, 2014

I hope I'm calling this the right thing. . .this is Aria and her "froggy."  She loved that thing!  It was filled with beans or rice or something and shaped like a frog.  So I never was told anything official about its purpose (Jamie, Makenzie, feel free to comment and clarify. . .) but I observed a lot of uses over our time there.  She especially loved having it draped on her while she slept.  I always love having heavy blankets on me while I sleep so I totally understand the comfort of that.  

Aria's Life in Review: Day 41 - August 9, 2014

My sister made this hatbox for Aria.  It is totally impractical for a newborn, but cute for a picture.

Aria's Life in Review: Day 40 - August 8, 2014

Family picture day!  I just snapped this picture with my phone while we were setting up, but it remains one of my favorites.  I didn't even bother putting Aria in clothes for pictures, my friend Rachel just modified a navy blue diaper cover to make it smaller, and we went with her classic headband look.

This was a hard day for me in terms of accepting our current reality.  I had so many visions of what I wanted the family pictures to look like, what kind of poses we would do, etc.  We already were starting off not perfect because Aria was so swollen that day from all her medications that she didn't look like her true self.  But then after only about 20 minutes of pictures, she had a seizure that stopped things in their tracks.  We had to put her back to bed to recover. . .just that little bit of activity was too much stimulation for her, even though she was mostly sleeping through it.  Thankfully, my brother-in-law is a professional and managed to get a few really good pictures in that short amount of time.  It was a hard but good lesson for me in learning to accept what you have to work with.  I'm such a perfectionist normally - at our last family pictures just 10 months prior, I had agonized for days over preparing the perfect outfits, the perfect hairstyles, etc.  And they looked amazing (except for Bennett getting a split lip the night before while playing).  But I find that everything about Aria has changed how I view things and how much to stress (or rather, how much I SHOULDN'T stress) over things I can't control.

Aria's Life in Review: Day 39 - August 7, 2014

This is Aria, being exasperated with the clothes situation.

Thus far, we had not put Aria in any clothes.  The main reason being because she would overheat even just wearing headbands.  Secondary reasons were the difficulty in finding an outfit that would even fit her.  However, I wanted to at least buy her an outfit or two.  Imagine with me that you're on the hunt for an outfit.  Ready?  Here is the criteria:

1. Preemie size ideally, because she only weighed 5 pounds and even newborn size clothing was ridiculously big.
2. Could not have any enclosed legs because of the PICC line in her leg through which she received her medications (so no cute tights, pants, leggings, or even full sleepers). In the same line of thinking, could not be anything that needed to be pulled up over her legs/hips/
3. Could not be a normal onesie or anything that you stretch over her head to put on, because of her breathing tube.
4. Could not zip up because of her heart monitor wires. (So ideally, we're looking for something that fastens with snaps all the way around so that all her wires have space to come through between the snaps)
5. Need to be able to get it off quickly just in case she has a medical emergency and they needed to access her wires or heart.
6. Theoretically, would be cute, but we're already grasping at straws here.

I went to 8-9 stores, and found a total of ONE outfit that met all the criteria (it was a little big still because it was newborn size, but not too bad).  I bought one other zebra onesie too that I thought was really cute, and it had a different kind of neck so we wouldn't have to go over her head at all . . .although in that moment I had forgotten about her PICC line.  Thankfully our cute nurse came up with a solution, she took the medication lines out of their holders and routed them through the outfit, then back into their holders.  

Aria's Life in Review: Day 38 - August 6, 2014

 Today was Aria's original due date!  How crazy that we've already been in the NICU for 5 1/2 weeks!

Aria's Life in Review: Day 37 - August 5, 2014

"Today Daddy sent me this picture of you.  He called it 'striking a pose!'  Of course, being Mommy, I texted him right back and told him to loosen your wires because it didn't look comfortable!"

Aria's Life in Review: Day 36 - August 4, 2014

It makes me sad that so many of her pictures have her poor cheeks being smooshed or pulled weird because of her breathing tube tape.  I have learned though that you just do the best with what you have, and she's so dang cute it doesn't really matter anyway.

From her book:

"You are sweaty all the time, but it seemed especially bad today.  It's probably because you're still slightly under the weather from the pneumatosis.  It's the reason why we've never bothered trying to put you in clothes.  Wire/tube problem aside, you would just overheat.  You already overheat even just when we hold you.  Even your headbands only stay on for a couple hours before your head gets too sweaty and the nurses pull them off.  So while you looked cute in the new accessories today, you looked the most comfy when the hats come off! "

Aria's Life in Review: Day 35 - August 3, 2014

This cute button headband was made by my Bennett!  I cut out a circle of felt, spread glue on it, and let him stick buttons all over it.  Then I just glued it to a headband.  I think it's pretty cute, and Bennett was sure proud of it!

Aria's Life in Review: Day 34 - August 2, 2014

Excerpt from Aria's baby book:

"Today when I brought Bennett to see you, he hopped right up on a chair and started cooing at you.  In reply, you favored him with a special treat - you opened your eyes and looked right at him! Of course that pleased Bennett, and you and he spent a few minutes having some good snuggles.  I just stayed out of the way and watched and took pictures.  Today is definitely one of the first times you have both really connected with each other since you are usually asleep when Bennett has visited in the past. I love the days that I get to bring Bennett to see you, but I do not get to hold you on those days since I am helping him too.  I think it is worth the sacrifice though because I love watching your sibling bond develop!  I know your souls remember each other and love each other."

Aria's Life in Review: Day 33 - August 1, 2014

Look at those black, black eyes! So captivating!

From her baby book:

Daddy was sick today so for the first time in your life, he had to go a day without seeing you.  He hated it but he didn't dare come to the NICU with you already being sick.  So instead I took care of Bennett all day, then after I put him to bed I came up to the hospital to see you.  

Your xrays were already looking better, and your fever was down, so I was able to hold you.  You seemed much more comfortable today.  When I asked nurse Erin if I could hold you, she said that she thought that since you were sick, it might be better if I didn't today.  Even though I was expecting that response, I was tired and stressed and started to cry as I said, "I want to do whatever's best for her, it just kind of kills me."  I think I caught poor nurse Erin off guard, because she immediately said she'd call the NP and see if she thought it would be okay for me to hold her.  I kept telling her it was fine, that I didn't want to put you in any stress if you weren't feeling well, but she conferred with the NP and they agreed that it would be okay for me to try holding you today and see how you do.  

It was so nice to hold you after you had been so sick yesterday, and after my crazy day at home.  I could tell you still weren't feeling great because you were much more snuggly and mellow than normal, but were were pretty alert for how late at night it was.  Right before we put you back so I could go home, I thanked sweet nurse Erin for letting me hold you and she gave me a great compliment - she said, " I don't know why I was worried, her numbers are way down and she looks happy to be in your arms!"