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!

Aria's Life in Review: Day 19 - July 18, 2014

I feel like in most pictures of preemies, it's hard to really get a sense for how small they are.  I like this picture because you can see how tiny she is compared to Mike's fingers.  Such perfection for such a tiny little face!

Around this time we were able to start holding Aria longer because she could handle it.  On this day Mike got a good 45 minute session with her!

Aria's Life in Review: Day 18 - July 17, 2014

Aria got a new taping every so often - I'd say maybe once a week on average.  While it was always nice to see fresh, clean tape, what I didn't like was the way it would sometimes push and pull at her cheeks.  It looked uncomfortable and made me feel bad for her.

Aria's Life in Review: Day 17 - July 16, 2014

This picture is a good sum-up of NICU life. . .it's exhausting!

Aria's Life in Review: Day 16 - July 15, 2014

I remember this day - I didn't want to leave.  I just wanted to sit there and stare at my gorgeous little girl while I stroked her hair.

Aria's Life in Review: Day 15 - July 14, 2014

Today Mike got to Aria first.  When I entered her NICU room I started walking toward him then glanced at her and did a double take!  I looked around and said, "wait, is this our baby??"  Mike just laughed at me and said was confused for a second too.  Aria looked so different!  Ever since she was born, she has been so swollen and puffy due to both her medical conditions and all her medications.  But today she was so tiny!  It was the first time that she actually looked like the preemie that she was.  When we asked about her weight, she was down a full pound from the heaviest she ever was.  That's pretty significant when you only weigh 5 pounds!

Today's other achievement was having her umbilical line pulled!  Up until now she's had a line going through her umbilical stump so that they could draw blood easily without having to poke her.  They usually only like to leave it in for about 10 days to avoid infection, but they left hers in a little longer because they wanted to make sure they got all the labs done that they wanted - and as more and more labs came back negative, they would have to think of another couple labs to try instead.  Finally now though they have exhausted almost every kind of lab that they can do, so they pulled the line out.

Aria's Life in Review: Day 14 - July 13, 2014

We brought Bennett to see Aria this day.  I think it was his 3rd or 4th time seeing her.  At this point his interest level consisted mostly of just a quick check-in hello, then he got bored and we'd let him play games on our phones.  Aria was still sleeping most of the time at this point so Bennett never saw her awake for the first few weeks which is why he would get bored so fast.

Aria's Life in Review: Day 13 - July 12, 2014

The night shift is responsible for baths.  When I came this morning I was amused that whoever her nurse had been had brushed her hair out straight.  It made it look so different!  

Aria's Life in Review: Day 12 - July 11, 2014

I put a headband on Aria for the first time today, and snapped a picture as I held her in my arms.  This impromptu picture later became her trademark one! She looked SO much more comfortable today, back on the breathing tube.

Aria's Life in Review: Day 11 - July 10, 2014

Day 2 on nose tubes. . .and the last day.  She was visibly laboring to breathe.  Before I left her that day, I stood by her toes to say goodbye, and I just felt sick to my stomach.  I just knew that if I left her, I wouldn't see her again.  She was having such a hard time breathing.  So when the doctors called us a couple hours later to say they wanted to put her breathing tube back in, we were so relieved.

Michael was the only one to hold her without the breathing tube.  He also was the only one to ever hear her cry while on the nose tubes since babies on breathing tubes can't cry (he said it was just a little kitten whimper really, but a sound nonetheless).

Aria's Life in Review: Day 10 - July 9, 2014

What a crazy day!  Our girl was taken off her breathing tube and put on nose tubes instead.  The doctors felt like her oxygen levels had been good enough that they wanted to try it.  I was surprised they wanted to try it so soon.  It was the first time we had been able to see Aria's mouth (although she still had a feeding tube, and was so swollen that her face was much puffier than normal.)

Aria's Life in Review: Day 9 - July 8, 2014

Today I was able to change Aria's diaper for the first time!  Such a typically dreaded chore, but I was elated to finally be able to do something to help my baby!

Aria's Life in Review: Day 8 - July 7, 2014

 This is how we spend most of our visits.  Just standing next to you, cuddling you as much as the NICU bed and all your tubes allow (which is basically just keeping a hand on you).

Aria's Life in Review: Day 7 - July 6, 2014

We had admired how the rest of the baby's in Aria's NICU room had cute Disney characters drawn on their station cabinets.  Today Aria joined the club!  Every time a baby left the NICU their animal would be erased, and the nurse who did them would create a new personalized one for the next baby.

This was a devastating day.  It was the day that her doctors sat down in a conference with us because most of Aria's preliminary tests had come back.  They had to break the news to us about the severity of her condition and that while she had stabilized, the tests showed that what was hurting her was genetic in nature and would never improve.  Her odds of living much longer were not good, and she would likely be hospitalized the rest of her life, whether short term in the NICU or long term in a care facility of some sort.

These were not the dreams we had for our little girl.  After our conference we were able to hold her for the second time.  I just held her and cried.  (Hence the tissues on my lap, which I actually just now noticed, haha)

Aria's Life in Review: Day 6 - July 5, 2014

We had to leave Bennett at home this day when we went to visit Aria because we wanted to have a longer visit than his 2 year old patience would allow.  He hadn't left our sides since I was released from the hospital the day before, including at night - he threw a fit when we tried to put him to bed in his room and only settled down when Mike let him fall asleep in his arms in our bed.  So he was NOT HAPPY when he realized he was not coming with us.  (Because of how this all happened with no preparation, poor Bennett had severe separation anxiety after Aria was born.  It took months before he was back to normal and wasn't nervous when I'd leave him with someone else.  So sad.)

This day, I had to leave a screaming and crying Bennett after half an hour of trying to console him.  I knew he was in good hands with his Nana and Papa, but it still broke my heart.  On the drive to the hospital I started crying and told Mike that I felt like both of my children really needed me and there was literally no way I could fully help either of them.  I felt like such a failure of a mother even though I knew there wasn't anything I could do.

This day I finally got to see that HAIR I had heard so much about!  And they were right - holy moly, that hair!  The day before I hadn't seen it because her head was wrapped in a bandage helmet because she was having an EEG done.  Her nurse today said that she had worked hard to scrub all the glue out of her hair that had held the wires in place.  She said that normally EEG placement on a baby is pretty easy, but that they probably had a hard time moving all of Aria's hair for each of the dozens of markers!

Aria's Life in Review: Day 5 - July 4, 2014

The moment I finally got to meet my daughter!!  I think the picture says it all :)

There were 4 babies in the room that day, but when we walked into her room my eyes immediately went to the first baby on the left.  The baby with its back to me, surrounded by machines, and head covered with bandages so that I couldn't even see the legendary hair.  But somehow I just KNEW she was mine!  I didn't even look at any of the other babies and sure enough, Mike started walking toward her bed.

Aria's Life in Review: Day 4 - July 3, 2014

This is the only day of Aria's life that we don't have any pictures from.  It makes me very sad :(  That is what happens when Mommy is in the hospital and Daddy is too busy running between both our hospitals coordinating things.

Aria's Life in Review: Day 3 - July 2, 2014

Today Mike's family flew in from NY.  It was the first flight they could get after we called them when Aria was born.  Mike picked them up from the airport and went straight to Primary Children's where my mom met them.  So Aria was able to meet Grammy, Nana, Papa, and Aunt Amanda that day!

Aria's Life in Review: Day 2 - July 1, 2014

I got to see my Bennett today!  He definitely was missing Mommy.  He enjoyed picking over my food.

Afterward, Mike took him to Primary Children's where he got to meet Aria!  My sisters and brother in law went too.  It was way past his bedtime and he was sleepy from falling asleep in the car, but he was still very interested in her.