October 4: Day +94

My new favorite "not nap" position... I rest in Bella's room in all kinds of uncomfortable positions, but this one makes me the happiest... Yes, I am actually standing, and partially laying on her bed at the same time!

Heaveno!

Before I forget... Ali's mystery item in her mouth? It was the cap to our green dry erass marker... Stumped you all! I know I know, parent of the year award goes to... yours truly for not noticing anything in her mouth till I was looking at the photos! What's your best parent of the year award? I asked this once a long time ago, and I'm sure there are PLENTY of new readers since, although I think my friend Lynne won for leaving her... oh, never mind... ;)

So... What day is it again? Monday, right? Feels like Tuesday already. Don't know why. Oh well. Rounds went well this morning, I walked out of Bella's room in my new Black sweatshirt from Grandma Carolyn (see above - thanks again, Grandma!) to a few chuckles, smirks, and smiles, but said nothing. I just smiled as always. The resident went through the plan for the day, and it was a great feeling to have her look at me each time she said what she'd like to do to see how I would react. I would either shake my head yes or no and she would adjust accordingly. I was really appreciative to have earned that much respect in rounds. I work hard at always stating my opinions on Bella's plan of care based on logic and reason, and not on emotions during rounds. In the room, I may say something like, "I just feel...," but in rounds, everyone realizes I occur more like part of the treatment team and less like an emotional parent. I take that as a compliment. Tomorrow, I will be in sweatshirt number 2. (See below - thanks Jack and Molly's Nana, Janet!)

Today's plan was again to sneak off whatever fluid we could, wean a little more sedation, wean her vent again, and hope to not go up on pressers. Well, we ended up with 2 out of 4 for the day, so we were "batting 500," to borrow another sports analogy. We had to go up on vasopressin yet again, and we will probably be exactly even for the day, which in a weird was is a victory, because we had to give 110 mL of albumin this morning as Bella's central venous pressure (measure of her fluid volume in her vasculature) finally dipped down to 6 when it had been running at 12-15 for the last two weeks. That was okay, since a month ago, they were giving her fluid 3-5 times a week, and now it's maybe once every 10 days or less. We were able to take that fluid back off within the same day, and her blood pressure held. Unfortunately, it was a roller coaster day with pressures.

On the positive side, we weaned her vent down to a rate of 8 breaths a minute from 10. She did fine with that. Tomorrow, we will increase the length of her pressure support trials to 3 hours 3 times a day. We will continue to gradually extend the length of the trials till she inevitably ends up breathing on her own all the time. I think she's almost ready for this. We also weaned her precedex to .3 today, and she tolerated it very well. The funny thing is, she's not jumping out of bed from either withdrawals or super energy. In fact, she seems quite comfortable most of the time, and still sleeps a lot. I really hits home just HOW MUCH (too much?) sedation she WAS on just 3 weeks ago. NO WONDER she couldn't regulate her blood pressure! She's on less than half of what she was on, and she's still pretty sleepy!

It seems that Bella's favorite part of the day is in the afternoon when we sit her up! She is very calm, and you just get the feeling that she is happy to be up off her back and sitting up again. Several staff who were off over the weekend and hadn't seen her for 5-10 days remarked how much better her skin looks, and they noticed she's lost some fluid. That was nice to hear, since I am up close and personal every day, I don't see the difference as clearly as someone who is close, but hasn't seen her in a while. You know how that goes at family/friend reunions...

"HEY! YOU LOOKIN' AT ME???"

So again, we're not out of the woods, but we are moving toward the clearing a little bit at a time, every day. I can't remember if I mentioned this thought recently; forgive me if I did... you know the phrase, "One day at a time?" I know it sounds cliche, but some times, one day is more than enough to have on my plate at a time! This whole thing is way too much for me to grasp and certainly control, so I just have to let the enormity wash over me, and reach up to God and hand him the pack of anxiety and worry on my shoulders. I am so grateful God has pushed us out of the nest, so to speak. I have learn and grown so much from this experience.

I have learned that one day can be enough.

I have learned that I am not in control, but I need to work like I am.

I have learned that I am far stronger than I ever gave myself credit for.

I have learned that home is where the heart is.

I have learned that strangers can offer just as much love and support as friends and family.

I have learned that education is a hinderance without the ability to think critically.

I have learned that I don't care how much you know, unless I first know how much you care.

I have learned that good intentions do not prevent mistakes from happening.

I have learned that if I don't take care of me, I can't take care of you.

I have learned that I have the heart of a child, but not the body.

I have learned that a baby can change the world, one person at a time. Again.

I have learned that just because I see providence, it doesn't mean I know God's mind.

I have learned that God knows what I can handle, while I think I know what I can't.

I have learned that my favorite color is pink.

I have learned that butterflies are magical.

I have learned that I LOVE SQUIRRELS.

I have learned to keep moving.

I have learned that one day Bella WILL look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

What have you learned?

God night.