Tuesday, July 14, 2009

What A Day!

Yesterday kind of rocked us all! Ewww, yuck...I am so happy that yesterday is O*V*E*R!! We went to visit and when we arrived she was awake, but only because Ken had just finished messing with her. She almost immediately fell FAST asleep. This usually never happens. She usually stays awake and if she is tired, she fights it and persists. She fell into a deep sleep immediately and there was nothing even Papa could do to wake her up.

We also noticed the right side of her head was more swollen than the previous day :-( We decided to go downstairs to the cafeteria for a while. We had a good cry down in the cafeteria, just over all of this in general and then proceeded back upstairs.

When we returned to the room, Ken said they were a little concerned about how sleepy and unresponsive Aviana was so they were going to take her down for a CT scan. He said they were going to check the fluid in her head and make sure the drain was at the right level. Nerves started to arise, but it was OK, just checking, that's good right?

Ken was disconnecting Aviana from all of the machines and the respiratory guy was doing his thing too. All was fine and then like a Clydesdale the doctor came stomping into the room and was telling the respiratory guy to "bag her, bag her, hyperventilate her, she is not initiating/taking breaths!!"

At this point, all of our nerves flew into warp speeds. It seemed everything was beeping like crazy and for a moment I felt as though I was floating....like in a dream (not a good one, by the way....a terrible one)

I tend to often use Ken as my compass. I looked to him, saw his calm demeanor, heard him humming and saying sweet things to Aviana while also giving the respiratory guy sh*t. I instantly dropped down a few notches. They wheeled our baby off and as they were rounding the corner I heard Ken say "Weeeee." I felt better!

We sat in the waiting room. We were trying to calm down further. In my 28 days of going down to the PICU, I have seen and heard so many things I wish I had never. Like a revolving door, there is family after family gathered some with solemn faces, some crying out in anguish, some just sitting quietly with tears rolling down their cheeks.

This was us...this is still us.

I try not to stay in the waiting room, as we feel we can actually feel their pain. My heart breaks in many pieces for all of the people I have seen. Yesterday, there was a family grieving so intensely that my mom, Gary and I just completely stopped in the middle of what we were saying and simply hung our heads in utter silence and sadness.

What happened? Did it start out as just a normal everyday morning? Did your life just turn upside down in the blink of an eye? Did you hear awful noises, voices and words you wish you never heard in your lifetime? Do you have guilt? Do you wish there were things you had said/not said or done/not done? Do you wish you appreciated that person more? Are you going to be a better person because of this horrific event? How are you going to push forward? Are you going to be so terrified that some other awful thing will happen to someone you love dearly? Are you going to curl up into a ball or are you going to move in a forward direction? Maybe a little of both?

So anyway, Aviana returned quickly and they said they decided to move the drain because it had drained too much. They said her ventricles were small which was telling them much had drained. She still had a mass of fluid on her right side which was not draining. Why? I don't know. They said she would be rolled down for another CT scan at 5 this morning and then we may know more. Oh, and by the way, they wanted to look at the scan for stroke too. WTF, that's what I had to say/think about that. Another thing I wish I NEVER heard.

I guess this is all part of the GRAND plan, I need to be pushed to my outer/inner most being. I need to have the earth move. I need to feel the most uncomfortable I have ever felt. I need to learn a great lesson. It's funny, I feel I have, but every time something else happens....I immediately think "OK, I guess I am not done yet." My mom, Gary and I heaved or sorry selves home with heavy, heavy hearts! Dave was in the loop the entire time and was sad too.

Dave and I went and ran errands, kept ourselves very busy and upbeat, with just a few lulls here and there. We pumped ourselves up...saying it can't all be good....we know this, we have been through this. There are steps forward AND back....heeeellllooooo, we know this!! We took a refresher course in "THE EVEN KEEL ATTITUDE."

My dad's voice was just what I needed last night to stay on track. He was emphatically reminding me, "She just had her scull put back on, she is going to go through good days and bad!!" He said, "we have all NEVER been through what she is going through, think of how bad we feel after the minuscule things we HAVE been through!! She will be just fine, don't worry!!"

Have I told you lately how blessed I am to have the best family ever?? So, we wraped the night up with Dave dying my nasty, nappy, yucky hair and then I cleaned the shower. Wooo Hooo!!

My last thought prior to drifting off to sleep was "Today is over and tomorrow is a new day...please let it be a better one!!"


  1. OH so sorry you had this day, but am continuing with prayer and a huge hopeful heart for Aviana's healing---her ongoing, strong, determined healing. I think it was very thoughtful of you and your family to grow a bit silent in the company of the heavily grieving family---shows what you have already learned through this---no one wants to learn these lessons, but your honoring was surely appreciated.

    Glad you got your locks colored :) sending hugs and support

  2. Jen,keep your head up. Our experiences mold us into the people we are and the person we become. Keep thinking and appreciating what you have and don't ever forget this horrible time. Someday when aviana is a teenager and starts testing your patience you'll need it! Stay strong!!!