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.