Happy Day +100!
Well, we're obviously not where we thought we'd be today, but that's okay. In so many ways, this journey has provided so much more to so many more than if Bella had chosen to be born EB free. So, the fact that we're in the ICU on day +100 instead of on our way home is really no different than when we came home from the hospital without our baby over a year ago. She remained in the NICU for another week or so.
So, Bella's entire life has been one giant opportunity for us to practice letting go of what "Should be," and instead embrace, "What is." What a gift she is to teach us this.
Check out the next installment of "Bella's Fabulous HAT of the Week!"
Someone had mentioned doing something special and celebrating day +100. Well, Bella decided to celebrate. They D/C'd her precedex today, and BOY did that make a difference. Bella was more awake and alert today than I've seen yet. We are still weaning sedation every 24 hours. Today, the precedex was turned off, and no sooner was the precedex turned off than Bella's blood pressure JUMPED up to 110 over 80! It stayed there all morning, despite us discontinuing her phenylephrine and dropping her vasopressin to .0009! We also pulled off all 150 mL of fluid they pumped into her overnight, and she'll still end up around -70 for the day! Oh, and we started pressure support trials again on the vent.
How 'bout them apples?
Sitting up again today... check out the Halloween socks!
My favorite part was watching the completely blank stare on the attending BMT doc's face when he walked in while she was rocking so well today. You could just SEE how baffled he already is by Bella. Another new doc = another baffled doc. None of us here are baffled by now of course, because we've been following and rooting for Bella the whole time. We KNOW what she is capable of, and we know what God and the Universe are capable of.
Pioneer Hall courtyard, a fitting name for our experience here...
We did some dressing changes today... arms, lines, ulcer, and trach. Then, it was time to head off to Collin's 4th birthday party! Remember, Collin is 'one of Ali's Minnesota boyfriends,' as she describes him. We have really grown to love his family and I think the feeling is mutual. Deb and Spence, Collin's parents, are just such good people, and have really welcomed us into their circle of family and friends, much like Logan and Erin, Jay and Lonni, and Brent and Dayna have. We feel really so blessed to have such a strong 'extended family' on the ground here to help us get away when we need to recharge.
The birthday boy stepping up and takin' a rip...
Look at that form!
Check out Ali and Aubrey's butterfly shirts!
Spence taking his turn as the horse for Ali...
I'll say this, sleep may equal recharge for my body, but sleep does not totally equal recharge for my BRAIN. I NEED to change my physical latitude and concentrate on something completely different than Bella (my love, but primary stressor) in order to give my brain a break. Working helps Angelique accomplish this, and Ali goes to pre-school. I need to go to people's houses, go for drives in the country, get outdoors and connect with nature. Those are the things that I need to do on the weekend in order for me to mentally endure five 12-hour days in a row for the past 15 weeks or so.
What do you do to recharge?
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."
This is a cute sequence of me and Aubrey playing together...