Raw & Real...

CAUTION:  The following is an expression of honesty from a mom who is doing all she can.  Offensive language and adult subject matter guaranteed.

It's been a long fucking day. This is day 7 of being contained in a small room, sleeping on the floor, and dealing with...well everything we are dealing with. I'm so grateful for all the good stuff; we have access to this exceptional level of care for our baby girl, our nurses are amazing, Jet is healthy and getting to maintain summer camp, we have so many people who love him/her/us, we have each other,  we have family here, we have family in MO, we have constant offers from friends to help, visitors, gifts for Liv.... the list goes on and really, we are SO blessed in so many ways.

But....

...today has been really tough. I cried ALOT today. Zero sleep makes me less tolerant of anything and everything, and I love our nurses I really do... at the end of the day I am so happy Liv has access to this incredible level of care but I really hate them coming in every 30 min!  Stop poking shit in my baby girl all night! ugh!  I'm going nuts on so little sleep.

She got her Epidural out....

I spent a solid hour carefully removing the tape around the tube in the way only a mommy can. They give you this stuff that helps remove the sticky glue but trust me, its a process and I wasn't about to watch her cry with someone else taking it all off so I did it solo.  It was sort of like ripping off the biggest band aid ever so it took forever just to keep her from crying. The Epidural came out in two seconds. Then 6 hours till her catheter came out. This she felt... and lets just say, she did not enjoy it.

It burned.  She screamed.  And really, there was no comfort for her.  I know she now feels better with it out but damn it if she didn't hate every second of the process.  Then her body started to get itchy (probably because we were off the Epidural and rolling the Morphine solo) and the nurses suggested a quick rinse down.  Welp, no surprise...  she also did not enjoy it and bawled her eyes out the whole time because now, with no epidural, she feels the pain from the surgery and her tummy hurt where that little sucker ball came out.   It was a total battle but one that needed to be fought.

She has been begging for food but until the nose tube thing is clear, they won't let her eat. With the catheter out she has to get up to pee but this is going to be painful (Which most likely means another long night ahead.  Our first alarm is set to go off in 2 1/2 hours at 1:00am) She stopped eating Monday and today is now Friday. I didn't know one little person could have so many tears in them and there is nothing worse than your baby hurting and not being able to do more for them.

I'm a strong woman, but today, I'm feeling really weak. Fuck Cancer.



Okay... I feel better now that I've got that out :)  Thanks for letting me vent!  And there really was so much good today so I don't want to end with me just ranting.  Liv felt well enough to open some of her gifts.  Her Uncle Micah and Aunt Brookie stoked her out with all kinds of art supplies which she LOVED.  We also got visits today from some of our most amazing friends.  My dear friend Amanda stopped by with her precious daughter, Brylie, who has been best friends with Liv for years.  They had the cutest conversations.  We also got a visit from our friends Danielle and Auntie Brandy who provided much needed distractions.  Brandy also dropped off some sweet art supplies and then doubled down with Mr. Frosty's bucks (Probably the quickest way into Blu's heart).

But one of the sweetest things we saw all day was Brandy's cousin, Eric, went to the Pirates game tonight and sent us this photo....

Our hearts just MELTED.  It's so absolutely amazing to know that people are cheering Liv Blu on from all over the world and it's just so humbling.  Thank you Eric, and thank all of you who still reach out and send your love.  You give us strength!

Love,

Carlie