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!"

Aria's Life in Review: Day 32 - July 31, 2014

Not a good day :(  Here is the summary I wrote in Aria's baby book:

"We have been in what Daddy calls a 'holding pattern' for a couple of weeks now.  You have stabilized greatly compared to when you were born and are only on a couple medications now, but no further improvement is being made.  If we want to move forward with trying to make long term improvements we need to start thinking about having some surgeries done, such as a tracheotomy for breathing and a G-tube for feeding.  Right from the beginning though, Daddy and I have felt like we really wanted to avoid putting you through any surgeries if possible.  So we went to the temple tonight to try to figure out what was the right thing to do for you, then we planned to visit you afterward.  As we were driving to the hospital, Daddy was right in the middle of saying that maybe we should go ahead and do what was needed to bring you home when my phone rang.  It was your doctor saying that you were sick today.  You had been running a fever and had a very tight stomach, so they did some tests and an xray had showed pneumatosis, which is gas cysts in your intestines.  They were afraid it was caused by an infection of some kind.  She explained that things could go bad very quickly if it perforated your bowels, but they had caught it relatively early and would be running tests and repeat xrays every 6 hours in order to keep a close eye on it.  For now they would be starting antibiotics and stopping your milk feedings to keep your intestines clear until this cleared up.

When we got to your room, we could tell you felt sick.  You looked miserable and restless, just like any baby that gets sick.  We of course did not hold you, since you already have problems overheating even when you don't have a fever.  Instead we gave you a nice bath, which is one of your favorite things (just like Bennett!)  By the time we had bathed you and sat with you a while and helped you get wrapped up with your favorite Froggy, you looked much more comfortable and fell asleep.  Until that point we had debated if I should stay at the hospital overnight with you in case things didn't look good, but you looked so much happier already that we decided to go home and get some sleep, just like you."

Aria's Life in Review: Day 31 - July 30, 2014

Happy 1 month birthday to Aria!  Which was super crazy and surreal since she wasn't even due for another week!  I love the face Aria's making in this picture - trying to see what I was holding up behind her.  Child Life at the hospital had made this cute sign for her and brought a balloon as well.  I had made my own sign, but when I got to the hospital, theirs was so much better that I hid mine and took it back home :)

Aria's Life in Review: Day 30 - July 29, 2014

We made our daily NICU visits at random times.  It was really hard to plan more than a day in advance because there were so many scheduling variables - if there were certain tests scheduled at the hospital, we would try to be there for them.  Michael was mostly back to work, and I worked a couple hours here and there.  I also was still recovering from my C-section so it took longer than normal to do housework and things like that.  Also Bennett was still very needy so we would try to keep one of us with him at all times when possible.  So that let to nights like this - where the only time I could figure out to get up to the NICU was after I had put Bennett down for the night.  I will say though, those NICU bedtime snuggles are the best!  It's dark and quiet, Aria would be snoring away, and I would also find myself dozing as I rocked her.  

Aria's Life in Review: Day 29 - July 28, 2014

Aria was born via emergency C-section 6 weeks early.  Our families came to help as soon as they could.  For Mike's parents, this meant booking the first plane tickets they could from New York.  Somehow, Papa had the presence of mind at the airport to buy a gift for Aria and Bennett.  He bought them small matching monkeys.  On this day we told Bennett to bring Aria her monkey to show her.  He was very insistent that both the monkeys were for him.  However, the second he saw Aria, he changed his tune and very happily shoved her monkey at her.  He would have even left it with her, but we told him he should take it home and take care of it for her.

Aria's Life in Review: Day 28 - July 27, 2014

Giving Aria a bath!  Usually night shift nurses did the bath, but this was a quiet Sunday and our primary nurse was happy to let us get her all clean for some visitors we had that day.  I always chuckled at how much shampoo I had to use on a baby that was only weeks old!

Aria's Life in Review: Day 27 - July 26, 2014

 Aria showed us all through her life that she was so stubborn.  She loved to hold her arms like this.  Mike would call it her "chicken wing" arms.  We were constantly pulling her arms down to her side, but within seconds she'd wriggle them back up.  Ditto on her wrist splints - she hated them!  No matter how well the nurses wrapped them, she'd find a way to wriggle her thumbs out of them and tuck them into her fists like she liked.  

Aria's Life in Review: Day 26 - July 25, 2014

This is a common scene - one of us looking up at the monitors, checking her numbers.  A lot of the pictures from this day have Mike looking at the monitors. . .she must have been having a harder time this day and kept setting off her breathing alarms for her oxygen.  By this point we were used to her warning chimes and would often not even break conversation.  Instead we would continue talking but with our eyes watching her numbers instead of looking at each other.  Usually her numbers would dip for a moment, causing the warning alarm, but would steadily climb back up into a good range.  This was fairly normal for all the babies.  At one point in our stay there, all 5 babies in that NICU room were on breathing tubes for a few days at the same time.  It was a noisy couple of days with alarms going off every couple minutes!

Aria's Life in Review: Day 25 - July 24, 2014

Isn't this hat adorable?? We had been in the NICU long enough at this point that we had started to make friends with the other parents.  The mom of the baby in the crib across from Aria had become a good friend in particular - we saw each other nearly every day so we'd sit and hold our babies and chat. She was here from out of state so didn't have anything to do when she wasn't bedside, so she had been making hats since that was a talent of hers.  On this day she presented us with an adorable owl hat for Aria!  We were so touched, and thrilled to have something else to add to her collection.  Of course, Aria being the little self-heater that she was, promptly overheated after about 2 minutes of wearing it, but it was still so cute to have!

Aria's Life in Review: Day 24 - July 23, 2014

Today my Bennett had his first appointment with the Child Life specialist.  I thought it was very helpful.  She went through what all of Aria's wires and tubes were with him in a different room with  bag of extras, then brought him in so he could see them on her.  I felt like that appointment, combined with the fact that Aria was starting to open her eyes more, really helped Bennett to bond better with Aria going forward.

Aria's Life in Review: Day 23 - July 22, 2014

Today had 2 notable events - first off, the first time a nurse stuck a bow in Aria's hair after her bath.  From then on she almost always had bows.  Secondly, the appearance of her wrist splints!  Occupational Therapy had done a couple exams with Aria and had decided to order tiny splints to try to straighten her wrists out.  It consisted of an inner red layer (that held her thumb out), and an outer white/blue layer (that kept her wrists straight instead of bent).  I thought they were so cute!  They looked like little boxing gloves!

Aria's Life in Review: Day 22 - July 21, 2014

Morning, sunshine!  We love seeing those peepers!  Look how dark her eyes were!

Aria's Life in Review: Day 21 - July 20, 2014

What an awesome day this was!  Aria opened her eyes a TON this day!  Up until now we've had a few sleepy eye squints, but few enough and quick enough that we can't photograph them.  But today we caught quite a few! It was so fun to see her more alert instead of just sleeping all the time.

Aria's Life in Review: Day 20 - July 19, 2014

I love this picture of my boys in the scrub room at the NICU - even Bennett had the routine down!

It was Bennett's 3rd birthday on this day.  He wore his SuperBrother shirt and came to thank Aria for her present (The Lego Movie) and to show her his favorite present from his friend (a Thomas train).  We also were able to help with Aria's bath tonight!